This Morning | Health | Myalgic Encephalopathy ME 123 - ITV Lifestyle: "M.E
Vicky Shepherd, 23 has been battling with Myalgic Encephalopathy (M.E) for over half her life.
Vicky believes the illness was triggered from when she had Glandular Fever when she was 11, but it took five years before Doctors came up with the diagnoses.
Vikki explains: 'At the time the doctors put my symptoms of contact migraine. stabbing pains in the head, flu symptoms, extreme fatigue and the fact I could only walk short distances.”
She adds: “I went from doctor to doctor, to a neurologist who couldn't see anything wrong, it wasn't until just after my 16th birthday when I finally go diagnosed.'
All types of people at all ages are affected. Severe fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace in sufferers.
It is often see that viral infection can onset the disease. However, an accident or operations can also be a trigger, although some people experience a slow, insidious onset.
Unfortunately, there is no widely accepted cure and no universally effective treatment for M.E.
Doctor Charles Shepherd explains, 'We can prescribe the patient with some drugs which may help with symptoms, there's research in Amercia into an Anti-Viral drug at the moment, however as it stands, there is no cure.'
Association of Young People with ME
Web: www.ayme.org.uk
Vicky’s charity
Web: www.postpals.co.uk"
I actually mailed in as follows:
Wonderful to see the medical mindset challenged and dignity given back to ME sufferers.
I am now 50 and the past 20 years have been a living hell overall with brief periods of ok health and energy. Only once have I been treated as a whole person by the medical profession instead I get treated for numerous conditions and symptoms as if they are all seperate.
These include depression, IBS, insomnia, recurring infections, joint and muscle pain and above all tiredness and lack of energy. I have no over-arching diagnosis, the closest being my GP saying, "oh, that sounds like fibromyalgia".
The effect on my life have been immense, I went from being top first year student across the whole of Durham University going on to gain a university scholarship for post graduate study to being a suicidal psychiatric in patient soon after a strange episode when my ankles and lower legs swelled, became painful and hot, diagnosed as a virus by my GP.
From then on life felt like wading through treacle...Better jump to now or I will never get this sent. Sofa bound today because yesterday I thought I felt well enough to emulsion a small wall. By last night I was hurting all over, foggy brained and totally exhausted. This morning I feel as if I am starting with flu - this sequence happens if I ever over do it...any help and advice most welcome and the article today helps me feel a little less alone.
Wednesday, December 10, 2008
Tuesday, December 02, 2008
Diagnostic Test for Fibromyalgia? Results of Imaging Study
Diagnostic Test for Fibromyalgia? Results of Imaging Study: "A study published in The Journal of Nuclear Medicine provides evidence of abnormal brain activity in fibromyalgia that is visible on a special kind of scan.
The scan, called single photon emission computer tomography (SPECT), showed abnormal blood flow in the brains of people with fibromyalgia - high levels of blood in an area known to deal with pain processing, and low levels in areas believed to deal with emotional response to pain. People who reported more severe fibromyalgia symptoms, based on the Fibromyalgia Impact Questionnaire, had greater abnormalities in cranial blood flow.
Significantly, researchers say levels of abnormal blood flow were not linked to anxiety and depression.
This study provides further evidence that fibromyalgia is a physiological disorder and that's it's based on neurological dysfunction. Researchers say the findings could be used in clinical trials to better gauge the effectiveness of treatments. It also could be used to confirm the severity of the illness and may someday lead to an objective diagnosis of fibromyalgia."
The evidence is piling up!
The scan, called single photon emission computer tomography (SPECT), showed abnormal blood flow in the brains of people with fibromyalgia - high levels of blood in an area known to deal with pain processing, and low levels in areas believed to deal with emotional response to pain. People who reported more severe fibromyalgia symptoms, based on the Fibromyalgia Impact Questionnaire, had greater abnormalities in cranial blood flow.
Significantly, researchers say levels of abnormal blood flow were not linked to anxiety and depression.
This study provides further evidence that fibromyalgia is a physiological disorder and that's it's based on neurological dysfunction. Researchers say the findings could be used in clinical trials to better gauge the effectiveness of treatments. It also could be used to confirm the severity of the illness and may someday lead to an objective diagnosis of fibromyalgia."
The evidence is piling up!
Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms
Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms: "Imaging scans called magnectic resonanace diffusion-tensor imaging (MR-DTI) and magnetic resonance imaging of voxel-based morphometry (MR-VBM) showed what researchers call a 'striking pattern of changes in brain morphology' in people with fibromyalgia (FMS).
In this study, abnormal brain morphology (form and structure) was detected in multiple regions of the brain. Changes detected with MR-DTI correlated with pain intensity, fatigue, self-perceived physical impairment, and stress symptoms. MR-VBM measurements didn't correlate to symptom intensities.
Researchers concluded that MR-DTI may support a diagnosis of FMS and possibly of similar pain syndromes as well."
In this study, abnormal brain morphology (form and structure) was detected in multiple regions of the brain. Changes detected with MR-DTI correlated with pain intensity, fatigue, self-perceived physical impairment, and stress symptoms. MR-VBM measurements didn't correlate to symptom intensities.
Researchers concluded that MR-DTI may support a diagnosis of FMS and possibly of similar pain syndromes as well."
Genetic factors may help to identify Fibromyalgia
This reads like a huge break through but will such tests and the aknowledgment of physical basis for fibromyalgia filter down to the GP surgery level?
May genetic factors in fibromyalgia help to identify patients with
differentially altered frequencies of immune cells?
Clin Exp Immunol. 2008 Dec;154(3):346-52.
Carvalho LS, Correa H, Silva GC, Campos FS, Baião FR, Ribeiro LS,
Faria AM, d'Avila Reis D.
Department of Morphology, Universidade Federal de Minas Gerais, Brazil.
PMID: 19037919
There is common agreement that fibromyalgia (FM) is an extremely
heterogeneous entity. Patients differ in their clinical symptoms,
endocrine and immune parameters. In this study we evaluated endocrine
and immunological features of distinct subsets of FM patients.
In contrast to previous attempts to identify subsets of FM patients,
based solely on their psychological and cognitive features, herein we
propose to separate FM patients by genetic features. Allelic
expression of the polymorphic promoter region of the serotonin
transporter (5-HTTLPR) was analysed as a relevant genetic factor for
FM. Seventy-five patients meeting the American College of
Rheumatology criteria and 27 healthy age-matched controls
participated in this study. All controls and FM patients were
submitted to genotyping of 5-HTTLPR. Twenty-seven FM patients, who
were able to discontinue hypnotic, sedative or psychotropic
prescription medications for at least 2 weeks, were then subdivided
into L (homozygote LL) or S groups (genotypes LS and SS). They were
evaluated for salivary cortisol levels, absolute number of leucocyte
subpopulations, including natural killer (NK) cells and activated T
and B lymphocytes.
Both groups presented decreased cortisol levels, more intense in the
L group, increased all B lymphocytes subsets and reduced
CD4(+)CD25(high) T lymphocytes. The L group had increased
CD4(+)CD25(low) activated T lymphocytes, while the S group displayed
elevated CD4(+)human leucocyte antigen D-related (HLA-DR)(+)
activated T lymphocytes and decreased NK cells.
We demonstrate that genetic factors may help to identify FM
individuals with differentially altered frequencies of immune cells.
May genetic factors in fibromyalgia help to identify patients with
differentially altered frequencies of immune cells?
Clin Exp Immunol. 2008 Dec;154(3):346-52.
Carvalho LS, Correa H, Silva GC, Campos FS, Baião FR, Ribeiro LS,
Faria AM, d'Avila Reis D.
Department of Morphology, Universidade Federal de Minas Gerais, Brazil.
PMID: 19037919
There is common agreement that fibromyalgia (FM) is an extremely
heterogeneous entity. Patients differ in their clinical symptoms,
endocrine and immune parameters. In this study we evaluated endocrine
and immunological features of distinct subsets of FM patients.
In contrast to previous attempts to identify subsets of FM patients,
based solely on their psychological and cognitive features, herein we
propose to separate FM patients by genetic features. Allelic
expression of the polymorphic promoter region of the serotonin
transporter (5-HTTLPR) was analysed as a relevant genetic factor for
FM. Seventy-five patients meeting the American College of
Rheumatology criteria and 27 healthy age-matched controls
participated in this study. All controls and FM patients were
submitted to genotyping of 5-HTTLPR. Twenty-seven FM patients, who
were able to discontinue hypnotic, sedative or psychotropic
prescription medications for at least 2 weeks, were then subdivided
into L (homozygote LL) or S groups (genotypes LS and SS). They were
evaluated for salivary cortisol levels, absolute number of leucocyte
subpopulations, including natural killer (NK) cells and activated T
and B lymphocytes.
Both groups presented decreased cortisol levels, more intense in the
L group, increased all B lymphocytes subsets and reduced
CD4(+)CD25(high) T lymphocytes. The L group had increased
CD4(+)CD25(low) activated T lymphocytes, while the S group displayed
elevated CD4(+)human leucocyte antigen D-related (HLA-DR)(+)
activated T lymphocytes and decreased NK cells.
We demonstrate that genetic factors may help to identify FM
individuals with differentially altered frequencies of immune cells.
Tuesday, November 25, 2008
Where is the deception in M.E.?
Strong stuff but I have to say that mental illness can be just as disabling and opportunity limiting....
As animals living in a dangerous world, humans have to 'get it right' a lot
of the time in order to survive. Misjudgments can lead to various dangers
for people.
Given this imperative it is not surprising that humans are very sensitive to
being deceived. When people are deceived they 'get it wrong' and are put in
danger.
When M.E. psychologizers (hereafter 'Meps') use terms like 'secondary
gains', 'undeserving sick', people with M.E. (hereafter PWME) might feel
they are being accused of deception. When Meps use terms like 'illness
beliefs', 'scanning', 'hysteria', they are implying that PWME are deceiving
themselves and are therefore (albeit unintentionally) deceiving other
people.
The common factor is that Meps perceive some kind of deception. Detection
and denouncement of this perceived deception has many rewards and generates
reasons to maintain this assertion. Meps may achieve a sense of superiority;
the deceiver has been outsmarted. They may gain a sense of security; they
are safe from being deceived. There is the secondary gain of gratitude from
those they alert to the supposed deception. When people can convince others
that a particular person or persons are deceiving them they may gain control
of the energy generated by the inbuilt fear of being deceived, the fear of
getting it wrong.
The satisfaction of denouncing a deception is something that most people can
identify with. In the children's story The Emperor's New Clothes
(http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes), I doubt that
anyone identifies with the suckers in the crowd, they are with the child
that sees clearly how things really are.
The fear of getting it wrong is a phenomenon that can be exploited by
convincing people that a deceit exists, i.e. accusing Jews in Nazi Germany
of secret activities to undermine society or asserting that Saddam Hussein
had control of weapons of mass destruction prior to the invasion of Iraq.
False accusations of deception can give power to act in certain ways that
might not otherwise be condoned and to manipulate mass-attitudes and
behavior. Many PWME and those that know them are well aware of the abuse and
neglect to which they have been subjected. This treatment of severely ill
people would normally be unthinkable in a civilized society. The implication
that PWME are self-decieved or decieving has fostered intolerance towards
them in societies that are generally noted for their humane treatment of the
sick.
When false accusations are disseminated and widely accepted a strange
phenomenon can occur. When no weapons of mass destruction were found in
Iraq neither President Bush nor Prime Minister Blair resigned nor were
forced out of office. Both misled their countries into embarking on an
illegal invasion but both survived the exposure of their false premise for
war.
Assertions about WMD's created anxiety which may have led people to accept
their existence in the absence of evidence. In this way many people had
unwittingly accepted a share in the falsity. This may have resulted in a
reduced impetus to displace the misguiding leaders because some people
protected their egos and sense of security. People were ready to grasp at
the proffered notion that Saddam was an evil person and his regime had to go
(despite the fact that other countries with unfit rulers have not been
invaded). This justification which did not make the invasion legal,
nevertheless saved people from confronting the frightening prospect that
they had been misled by their leaders and they 'got it wrong'.
In some circumstances it is an easy thing to say, 'I was wrong', but in
certain situations such an admission can demand extraordinary courage and
humility because it carries with it a profound sense of danger. The degree
of danger is dependent on many factors which include the degree of
ego-identity enmeshed with the mistaken belief and the level of certainty
formerly espoused to others.
This means that people whose egos and personas are highly associated with
their opinions are less likely to change or modify their opinions according
to available information. Believing their opinions are 'right' could be an
imperative for them.
Some people (including myself) that have remained with the same GP for many
years may have noticed a gradual change in attitude towards a diagnosis of
M.E. This is made possible because many GP's, although frustrated by the
illness and sometimes by their patients, retained their open-mindedness and
never settled on a fixed opinion. Remaining flexible has enabled them to
accept new research findings and in some cases observe for themselves the
process of the disease in their patients.
Meps who voiced their opinions strongly are in a difficult position even
though they have succeeded in disseminating their opinions into wider
society. They cannot easily recant their opinions because of professional
pressures. They must now strive to maintain their position as best they can
or carefully reposition. Those that have to some degree colluded with their
opinions may provide support and remain reluctant to refute Meps theories
outright.
Asserting that CFS (a diagnosis that includes some PWME) is 'heterogeneous'
offers a useful way out for Meps and those that accept their theories. CFS
being 'heterogeneous' facilitates the possibility that some people diagnosed
with CFS are deluding themselves and have confused everyone. This may
create some justification for those powerful doctors that have forcefully
espoused the view that M.E. is psychological.
Other possible get-outs might include: rejecting Cartesian dualism;
misdiagnosis; patients can develop new, serious illnesses; CFS is real;
patients symptoms are real; etc. This type of wriggling and repositioning
will probably continue whilst research adds weight to the evidence of
physical disease in M.E.
I imagine it is a bitter irony for many people with M.E. that those that
implied they are deceiving themselves into thinking they are ill, must now
struggle to maintain their own illness beliefs about M.E.
Meps must ignore or devalue research that demonstrates physical
abnormalities in M.E. or strive to demonstrate that such abnormalities are
psychological in origin. Their activities may impede biophysical
investigations and they must justify this behavior. The position held by
some vociferous and active Meps is precarious, being wrong would not only
undermine them professionally and in some cases financially; but also poses
a threat to their ego identity.
Until Meps are at least theoretically able to accept the role of deluded
psychologizer they will never be able to consider their position honestly.
Their activities will probably continue to add to the considerable suffering
of PWME and impede the research that might offer real solutions. They may
also continue to influence policy makers, the media, and the medical
professions with their opinions.
Attempting to analyze any type of controversy always takes me to
considerations of what different opinions mean to me personally. If I do
not know how I prefer one side of an argument over another the temptation
may be to adopt those opinions that are most comfortable or profitable to
me. Many years ago a doctor was appalled by the way fellow physicians
treated PWME as mentally ill, and asked; 'what if you are wrong?'
The theoretical gains for a PWME in accepting a psychological interpretation
for their symptoms has led many, like myself, to attempt just that way of
thinking. Their answer to the question above might be; 'I might get a life
back, regain some social dignity, have a career and a family, go on holidays
and not be in pain all the time or worried about money and the future.'
These theoretical potential gains mean that PWME can readily weigh a
psychological interpretation in their considerations and many like myself
have tried this. I've tried every imaginable approach to GET and not just
over weeks or months but years. Not only did I have months of high quality
counseling but I am a qualified counselor with a research MA in counseling
and psychotherapy.
All this effort resulted in precisely zero benefit to my health but did
cause severe exacerbations and several relapses. It was not until I began
antibiotic therapy for the infections that were finally discovered that I
got some improvement in the disabling symptoms I'd lived with for 17 years.
As for Meps, I doubt that some can even begin to contemplate the question
posed above. For them the cost of being wrong is too high for them to
examine this honestly. They must keep in focus that M.E. is all the fault of
the patient's weak mind and self-deception. They must keep their focus of
attention narrow to avoid being disturbed by new scientific evidence. They
must shut out the shattered lives of patients that lie in the wake of their
theories.
Above all, they must obscure their own motives.
Peter Kemp
As animals living in a dangerous world, humans have to 'get it right' a lot
of the time in order to survive. Misjudgments can lead to various dangers
for people.
Given this imperative it is not surprising that humans are very sensitive to
being deceived. When people are deceived they 'get it wrong' and are put in
danger.
When M.E. psychologizers (hereafter 'Meps') use terms like 'secondary
gains', 'undeserving sick', people with M.E. (hereafter PWME) might feel
they are being accused of deception. When Meps use terms like 'illness
beliefs', 'scanning', 'hysteria', they are implying that PWME are deceiving
themselves and are therefore (albeit unintentionally) deceiving other
people.
The common factor is that Meps perceive some kind of deception. Detection
and denouncement of this perceived deception has many rewards and generates
reasons to maintain this assertion. Meps may achieve a sense of superiority;
the deceiver has been outsmarted. They may gain a sense of security; they
are safe from being deceived. There is the secondary gain of gratitude from
those they alert to the supposed deception. When people can convince others
that a particular person or persons are deceiving them they may gain control
of the energy generated by the inbuilt fear of being deceived, the fear of
getting it wrong.
The satisfaction of denouncing a deception is something that most people can
identify with. In the children's story The Emperor's New Clothes
(http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes), I doubt that
anyone identifies with the suckers in the crowd, they are with the child
that sees clearly how things really are.
The fear of getting it wrong is a phenomenon that can be exploited by
convincing people that a deceit exists, i.e. accusing Jews in Nazi Germany
of secret activities to undermine society or asserting that Saddam Hussein
had control of weapons of mass destruction prior to the invasion of Iraq.
False accusations of deception can give power to act in certain ways that
might not otherwise be condoned and to manipulate mass-attitudes and
behavior. Many PWME and those that know them are well aware of the abuse and
neglect to which they have been subjected. This treatment of severely ill
people would normally be unthinkable in a civilized society. The implication
that PWME are self-decieved or decieving has fostered intolerance towards
them in societies that are generally noted for their humane treatment of the
sick.
When false accusations are disseminated and widely accepted a strange
phenomenon can occur. When no weapons of mass destruction were found in
Iraq neither President Bush nor Prime Minister Blair resigned nor were
forced out of office. Both misled their countries into embarking on an
illegal invasion but both survived the exposure of their false premise for
war.
Assertions about WMD's created anxiety which may have led people to accept
their existence in the absence of evidence. In this way many people had
unwittingly accepted a share in the falsity. This may have resulted in a
reduced impetus to displace the misguiding leaders because some people
protected their egos and sense of security. People were ready to grasp at
the proffered notion that Saddam was an evil person and his regime had to go
(despite the fact that other countries with unfit rulers have not been
invaded). This justification which did not make the invasion legal,
nevertheless saved people from confronting the frightening prospect that
they had been misled by their leaders and they 'got it wrong'.
In some circumstances it is an easy thing to say, 'I was wrong', but in
certain situations such an admission can demand extraordinary courage and
humility because it carries with it a profound sense of danger. The degree
of danger is dependent on many factors which include the degree of
ego-identity enmeshed with the mistaken belief and the level of certainty
formerly espoused to others.
This means that people whose egos and personas are highly associated with
their opinions are less likely to change or modify their opinions according
to available information. Believing their opinions are 'right' could be an
imperative for them.
Some people (including myself) that have remained with the same GP for many
years may have noticed a gradual change in attitude towards a diagnosis of
M.E. This is made possible because many GP's, although frustrated by the
illness and sometimes by their patients, retained their open-mindedness and
never settled on a fixed opinion. Remaining flexible has enabled them to
accept new research findings and in some cases observe for themselves the
process of the disease in their patients.
Meps who voiced their opinions strongly are in a difficult position even
though they have succeeded in disseminating their opinions into wider
society. They cannot easily recant their opinions because of professional
pressures. They must now strive to maintain their position as best they can
or carefully reposition. Those that have to some degree colluded with their
opinions may provide support and remain reluctant to refute Meps theories
outright.
Asserting that CFS (a diagnosis that includes some PWME) is 'heterogeneous'
offers a useful way out for Meps and those that accept their theories. CFS
being 'heterogeneous' facilitates the possibility that some people diagnosed
with CFS are deluding themselves and have confused everyone. This may
create some justification for those powerful doctors that have forcefully
espoused the view that M.E. is psychological.
Other possible get-outs might include: rejecting Cartesian dualism;
misdiagnosis; patients can develop new, serious illnesses; CFS is real;
patients symptoms are real; etc. This type of wriggling and repositioning
will probably continue whilst research adds weight to the evidence of
physical disease in M.E.
I imagine it is a bitter irony for many people with M.E. that those that
implied they are deceiving themselves into thinking they are ill, must now
struggle to maintain their own illness beliefs about M.E.
Meps must ignore or devalue research that demonstrates physical
abnormalities in M.E. or strive to demonstrate that such abnormalities are
psychological in origin. Their activities may impede biophysical
investigations and they must justify this behavior. The position held by
some vociferous and active Meps is precarious, being wrong would not only
undermine them professionally and in some cases financially; but also poses
a threat to their ego identity.
Until Meps are at least theoretically able to accept the role of deluded
psychologizer they will never be able to consider their position honestly.
Their activities will probably continue to add to the considerable suffering
of PWME and impede the research that might offer real solutions. They may
also continue to influence policy makers, the media, and the medical
professions with their opinions.
Attempting to analyze any type of controversy always takes me to
considerations of what different opinions mean to me personally. If I do
not know how I prefer one side of an argument over another the temptation
may be to adopt those opinions that are most comfortable or profitable to
me. Many years ago a doctor was appalled by the way fellow physicians
treated PWME as mentally ill, and asked; 'what if you are wrong?'
The theoretical gains for a PWME in accepting a psychological interpretation
for their symptoms has led many, like myself, to attempt just that way of
thinking. Their answer to the question above might be; 'I might get a life
back, regain some social dignity, have a career and a family, go on holidays
and not be in pain all the time or worried about money and the future.'
These theoretical potential gains mean that PWME can readily weigh a
psychological interpretation in their considerations and many like myself
have tried this. I've tried every imaginable approach to GET and not just
over weeks or months but years. Not only did I have months of high quality
counseling but I am a qualified counselor with a research MA in counseling
and psychotherapy.
All this effort resulted in precisely zero benefit to my health but did
cause severe exacerbations and several relapses. It was not until I began
antibiotic therapy for the infections that were finally discovered that I
got some improvement in the disabling symptoms I'd lived with for 17 years.
As for Meps, I doubt that some can even begin to contemplate the question
posed above. For them the cost of being wrong is too high for them to
examine this honestly. They must keep in focus that M.E. is all the fault of
the patient's weak mind and self-deception. They must keep their focus of
attention narrow to avoid being disturbed by new scientific evidence. They
must shut out the shattered lives of patients that lie in the wake of their
theories.
Above all, they must obscure their own motives.
Peter Kemp
Thursday, November 06, 2008
Fibromyalgia and IBS flare up
Irritible bowel syndrome and fibromyalgia often go hand in hand.
My IBS was diagnosed almost 30 years ago, I finally got it under some kind of control just over 10 years ago after a perod when my entire digestive tract was inflamed mouth to anus.
At that time I was being sick every day with atrocious diahreha, various investigations - colonoscopy, gastroscopy, barium push through etc showed the inflammation and the fastest push through my consultant had ever seen! It became patently obvious at this time that anything with dairy products in made the sickness and diarhea 100 times worst.
I took some advice and eliminated dairy as much as is possible, the black circles round my eyes cleared within weeks! The digestive problems took longer but settled to an almost tolerable level for a few years with a fair few flare ups along the way. I take mebeverine daily plus lopermide when needed although I try to avoid the later if I dont need to go out of the house as bunging my bowels up knocks them further out of control in the long run.
Now, however, despite being dairy free, eating no processed foods etc my bowel symptoms are out of control with diet and meds seemingly ineffective. Basically I never know if I am going to wake up and have a day of feeling I need to go and open my bowels and only pass mini pellets with a lot of effort or suffer explosive diarhea - either way I have pain and disruption to any sort of normal life....
So today I start purging for a colonoscopy tomorrow and it is not much fun at all. A very limited diet was started yesterday and 4 senna taken 10pm, which have not worked yet but yesterday was a "pellet" day. My last solida are allowed at 1pm, 24 hours before my examination, and at 2pm I take the first picolax which works something like putting caustic soda and boiling water down a blocked drain, boy does that stuff make you go! A second picolax later should keep me on the bog most of the day so I hope I won't have time or energy to feel hungry. Clear fluids only until 11am Friday then off to hospital for an enema, they sure make sure you are clean inside, and the colonoscopy..
Results to follow
My IBS was diagnosed almost 30 years ago, I finally got it under some kind of control just over 10 years ago after a perod when my entire digestive tract was inflamed mouth to anus.
At that time I was being sick every day with atrocious diahreha, various investigations - colonoscopy, gastroscopy, barium push through etc showed the inflammation and the fastest push through my consultant had ever seen! It became patently obvious at this time that anything with dairy products in made the sickness and diarhea 100 times worst.
I took some advice and eliminated dairy as much as is possible, the black circles round my eyes cleared within weeks! The digestive problems took longer but settled to an almost tolerable level for a few years with a fair few flare ups along the way. I take mebeverine daily plus lopermide when needed although I try to avoid the later if I dont need to go out of the house as bunging my bowels up knocks them further out of control in the long run.
Now, however, despite being dairy free, eating no processed foods etc my bowel symptoms are out of control with diet and meds seemingly ineffective. Basically I never know if I am going to wake up and have a day of feeling I need to go and open my bowels and only pass mini pellets with a lot of effort or suffer explosive diarhea - either way I have pain and disruption to any sort of normal life....
So today I start purging for a colonoscopy tomorrow and it is not much fun at all. A very limited diet was started yesterday and 4 senna taken 10pm, which have not worked yet but yesterday was a "pellet" day. My last solida are allowed at 1pm, 24 hours before my examination, and at 2pm I take the first picolax which works something like putting caustic soda and boiling water down a blocked drain, boy does that stuff make you go! A second picolax later should keep me on the bog most of the day so I hope I won't have time or energy to feel hungry. Clear fluids only until 11am Friday then off to hospital for an enema, they sure make sure you are clean inside, and the colonoscopy..
Results to follow
Sunday, November 02, 2008
Against CBT and GET
November 2008: ME Free For All: "It looks as though Dr Martin Edwards has read the NICE (National Institute for Health and Clinical Excellence) guidelines for the treatment of M.E. (Myalgic Encephalomyelitis), which it bundles indiscriminately with Chronic Fatigue Syndrome, since he seems to prefer the latter term and recommends the two treatments Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) for it (Ask the Doc: Tired excuse, Chat, 6 November 2008).
I wonder if he is aware that the latest research, conducted by the very same people who advocate these treatments and/or administer them, both in this country and elsewhere (including Belgium, USA and Japan), consistently show that CBT has no lasting benefit, without relapse, for people with M.E. and a majority are worse after graded exercise, some irrecoverably so...
A key symptom of ME is post exertional malaise, i.e. disproportionate fatigue and exacerbation of symptoms after minor exertion, that can occur up to 72 hours later and can last a long time.
Graded Exercise Therapy (GET) was found to be positively harmful in over 30% of ME patients in a recent survey by Action for ME. Some patients have ended up in a wheelchair or bedbound since they tried it - what drug with these results would be recommended without a warning"
I wonder if he is aware that the latest research, conducted by the very same people who advocate these treatments and/or administer them, both in this country and elsewhere (including Belgium, USA and Japan), consistently show that CBT has no lasting benefit, without relapse, for people with M.E. and a majority are worse after graded exercise, some irrecoverably so...
A key symptom of ME is post exertional malaise, i.e. disproportionate fatigue and exacerbation of symptoms after minor exertion, that can occur up to 72 hours later and can last a long time.
Graded Exercise Therapy (GET) was found to be positively harmful in over 30% of ME patients in a recent survey by Action for ME. Some patients have ended up in a wheelchair or bedbound since they tried it - what drug with these results would be recommended without a warning"
Tuesday, October 28, 2008
Medical Misogyny - Margaret Williams - 27th October 2008
I would tell everyone affected by ME, CFS and indeed Fibromyalgia that this is essential reading, very, very scary but forewarned and all that...If the Wesley school keep the uper hand in the treatment of chronic fatigue diseases many many more people are going to suffer the outrage of inappropriate, even harmful, treatment and being demonised as malingerers. A total nightmare!
Medical Misogyny - Margaret Williams - 27th October 2008
Medical Misogyny - Margaret Williams - 27th October 2008
Wednesday, October 01, 2008
DIAGNOSTIC METHOD FOR FIBROMYALGIA (FMS) OR CHRONIC FATIGUE SYNDROME (CFS)
This could be world changing, patent pending at the moment though....
(WO/2008/010082) DIAGNOSTIC METHOD FOR FIBROMYALGIA (FMS) OR CHRONIC FATIGUE SYNDROME (CFS): "The invention relates to methods for the diagnosis, prognosis and treatment of Fibromyalgia (FM or FMS) and Chronic fatigue syndrome (CFS) and to products for use therein.
Background of the invention
FMS (code G93.3) and CFS (code M 79.0) are considered as two different diseases based on the International Classification of Diseases (ICD-10) supported by The World Health Organization (WHO).
There is some overlap in symptomology between the diseases: bodily pain, chronic fatigue, unrefreshing sleep, mood disorders, irritable bowel; but the diseases have different clinical presentation profiles, as well as different criteria for case definition, prevalence and prognoses. A detailed clinical history, a full physical exploration and some complementary biochemistry test (routine analysis in blood and urine: a complete blood count with differential, C-reactive protein, alanine aminotransferase, albumin) allow physicians to provide a clinical diagnosis based on: -FMS: Clinical criteria of the American College of Rheumatology (1990)18 (ACR'90). -CFS: Clinical criteria of the Center for Disease Control and Prevention (19Fukuda et. al 1994) (CDC94).
Summary of the invention
The present inventors have identified positions of single nucleotide polymorphism (SNPs) which can be used for reliably determining FMS and CFS phenotypes. Accordingly the present invention provides a method of diagnosing or prognosing a fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) phenotype in a subject.....The invention also provides a method of selecting a suitable treatment for treating FMS or CFS in a subject, and a method of treating FMS or CFS in a subject as set out in the present claims."
(WO/2008/010082) DIAGNOSTIC METHOD FOR FIBROMYALGIA (FMS) OR CHRONIC FATIGUE SYNDROME (CFS): "The invention relates to methods for the diagnosis, prognosis and treatment of Fibromyalgia (FM or FMS) and Chronic fatigue syndrome (CFS) and to products for use therein.
Background of the invention
FMS (code G93.3) and CFS (code M 79.0) are considered as two different diseases based on the International Classification of Diseases (ICD-10) supported by The World Health Organization (WHO).
There is some overlap in symptomology between the diseases: bodily pain, chronic fatigue, unrefreshing sleep, mood disorders, irritable bowel; but the diseases have different clinical presentation profiles, as well as different criteria for case definition, prevalence and prognoses. A detailed clinical history, a full physical exploration and some complementary biochemistry test (routine analysis in blood and urine: a complete blood count with differential, C-reactive protein, alanine aminotransferase, albumin) allow physicians to provide a clinical diagnosis based on: -FMS: Clinical criteria of the American College of Rheumatology (1990)18 (ACR'90). -CFS: Clinical criteria of the Center for Disease Control and Prevention (19Fukuda et. al 1994) (CDC94).
Summary of the invention
The present inventors have identified positions of single nucleotide polymorphism (SNPs) which can be used for reliably determining FMS and CFS phenotypes. Accordingly the present invention provides a method of diagnosing or prognosing a fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS) phenotype in a subject.....The invention also provides a method of selecting a suitable treatment for treating FMS or CFS in a subject, and a method of treating FMS or CFS in a subject as set out in the present claims."
Petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS
I struggle enough with acute guilt arising from all the limitations having a chronic fatigue condition (fibromyalgia)impose on those with CFS without being told CBT is the answer. i am lucky in that I was referred to the CBT therapist at my GP surgery, she did the initial interview and concluded she ( and CBT) would not be of any help to me, so there you go from the mouth of a CBT therapist herself. . . . and I was referred on, and on, and still going on..
I still laugh though when I recall her asking me about my pain, one at that time was acute sharp, stabbing pains in my elbows which I described as if someone was sticking needled in to them...to which she asked " who do you think is sticking needles into your elbows?"
Er, no-one, I was just describing the pain, a lexicon all of its own to be sure!
The serious business now, please sign to register your opposition to CBT for all CF conditions, blog or email and make this huge
Serious Stuff: ME Free For All:
"Click here petitions.number10.gov.uk/NHSCBT/ for the online petition
We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.
More details from petition creator
Following economist Lord Layard’s promotion of CBT on economic grounds, the NHS has seen a boom in the funding made available for the exclusive employment and training of CBT therapists in the NHS. However, equal funding has NOT been made available for a diverse range of psychotherapies.
CBT continues to be aggressively promoted on the grounds of ‘evidence’ of its alleged effectiveness in treating some forms of mental distress, thereby severely and unfairly biasing public perception of CBT as a cure-all when this is patently untrue. Published evidence exists that shows CBT to have no long-term benefit in treating common difficulties such as anxiety or psychosis.
Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). As CBT is promoted on the grounds of ‘evidence’ of its effectiveness with some patients, this petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms"
I still laugh though when I recall her asking me about my pain, one at that time was acute sharp, stabbing pains in my elbows which I described as if someone was sticking needled in to them...to which she asked " who do you think is sticking needles into your elbows?"
Er, no-one, I was just describing the pain, a lexicon all of its own to be sure!
The serious business now, please sign to register your opposition to CBT for all CF conditions, blog or email and make this huge
Serious Stuff: ME Free For All:
"Click here petitions.number10.gov.uk/NHSCBT/ for the online petition
We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.
More details from petition creator
Following economist Lord Layard’s promotion of CBT on economic grounds, the NHS has seen a boom in the funding made available for the exclusive employment and training of CBT therapists in the NHS. However, equal funding has NOT been made available for a diverse range of psychotherapies.
CBT continues to be aggressively promoted on the grounds of ‘evidence’ of its alleged effectiveness in treating some forms of mental distress, thereby severely and unfairly biasing public perception of CBT as a cure-all when this is patently untrue. Published evidence exists that shows CBT to have no long-term benefit in treating common difficulties such as anxiety or psychosis.
Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). As CBT is promoted on the grounds of ‘evidence’ of its effectiveness with some patients, this petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms"
Wednesday, September 24, 2008
Self-assessed physical function levels of women with fibromyalgia a national survey - Source: Womens Health Issues, Sep-Oct 2008
Self-assessed physical function levels of women with fibromyalgia a national survey - Source: Womens Health Issues, Sep-Oct 2008
"The average woman in this sample reported having less functional ability related to activities of daily living and instrumental activities of daily living than the average community-dwelling woman in her 80s."
I know exactly how that feels, I may look ok but if I overstep the "pace" of day to day life carrying out even the most basic tasks and activities that most people consider just part of a normal day before work and leisure become a painfl ordeal for me.
Today for example I plan to plant some spring bulbs to give me something to look forward to through the dark days of winter but I know I will end up having to sit on the wet grass and scrape holes barely deep enough as just 5 to 10 mins of bending in the garden results in very painful legs and arms and the likelyhood of waking up tomorrow hrting all over...
so I end up living a very little life. . .isolted and in pain.
"The average woman in this sample reported having less functional ability related to activities of daily living and instrumental activities of daily living than the average community-dwelling woman in her 80s."
I know exactly how that feels, I may look ok but if I overstep the "pace" of day to day life carrying out even the most basic tasks and activities that most people consider just part of a normal day before work and leisure become a painfl ordeal for me.
Today for example I plan to plant some spring bulbs to give me something to look forward to through the dark days of winter but I know I will end up having to sit on the wet grass and scrape holes barely deep enough as just 5 to 10 mins of bending in the garden results in very painful legs and arms and the likelyhood of waking up tomorrow hrting all over...
so I end up living a very little life. . .isolted and in pain.
Monday, September 08, 2008
www.fibromyalgia-associationuk.org
www.fibromyalgia-associationuk.org: "'Womans Hour' on Radio 4 features Fibromyalgia
BBC Radio 4's Woman's Hour will be carrying out a piece on Fibromyalgia on Monday 8th September between 10am and 10.45am as part of FMA UK's Awareness Week.
It will be featuring FMA UK Medical Advisory Board member Dr Ernest Choy, a consultant Rheumatologist and Director of Research and Development at King's College Hospital. It will also feature Janet Horton FMA UK trustee (you will also know her from the benefits helpline and the forum), and Barbara a sufferer."
BBC Radio 4's Woman's Hour will be carrying out a piece on Fibromyalgia on Monday 8th September between 10am and 10.45am as part of FMA UK's Awareness Week.
It will be featuring FMA UK Medical Advisory Board member Dr Ernest Choy, a consultant Rheumatologist and Director of Research and Development at King's College Hospital. It will also feature Janet Horton FMA UK trustee (you will also know her from the benefits helpline and the forum), and Barbara a sufferer."
Hippocampal dysfunction may explain fibromyalgia syndrome symptoms | Radiology News | Radiology Articles | Medical Imaging News | Healthcare News | Source: Reuters
Neuro News|Hippocampal dysfunction may explain fibromyalgia syndrome symptoms | Radiology News | Radiology Articles | Medical Imaging News | Healthcare News | Source: Reuters: "A paper in the July issue of the Journal of Rheumatology suggests that hippocampus dysfunction may explain some symptoms of fibromyalgia syndrome.
Dr. Yasser Emad, of Cairo University, Egypt, and colleagues used proton magnetic resonance spectroscopy (1H-MRS) to examine hippocampal function in 15 patients with fibromyalgia syndrome and ten healthy age-matched controls."
The rsearchers concluded: ""The hippocampus was dysfunctional in patients with fibromyalgia, as shown by lower NAA levels..., representing neuronal or axonal metabolic dysfunction," the investigators conclude. "As the hippocampus plays crucial roles in maintenance of cognitive functions, sleep regulation, and pain perception, we suggest that metabolic dysfunction of hippocampus may be implicated in the appearance of these symptoms associated with this puzzling syndrome."
Dr. Yasser Emad, of Cairo University, Egypt, and colleagues used proton magnetic resonance spectroscopy (1H-MRS) to examine hippocampal function in 15 patients with fibromyalgia syndrome and ten healthy age-matched controls."
The rsearchers concluded: ""The hippocampus was dysfunctional in patients with fibromyalgia, as shown by lower NAA levels..., representing neuronal or axonal metabolic dysfunction," the investigators conclude. "As the hippocampus plays crucial roles in maintenance of cognitive functions, sleep regulation, and pain perception, we suggest that metabolic dysfunction of hippocampus may be implicated in the appearance of these symptoms associated with this puzzling syndrome."
What A Sleep Study Can Reveal About Fibromyalgia
Recent research into fibromyalgia....What A Sleep Study Can Reveal About Fibromyalgia: "MTRI's first opportunities to apply quantitative analysis, remote sensing technology and computer algorithms to clinical challenges, said Burns. 'In this case, our analyses of sleep stage dynamics suggest potential clinical relevance,' he noted. Newly explored measures of sleep fragmentation seem to correlate - at least in this study - with levels of pain reported by fibromyalgia patients."
Wednesday, August 27, 2008
Estimates of the Prevalence and Number of Fibromyalgia Syndrome Patients and Their Alpha-1 Antitrypsin Phenotypic Distribution in Ten Countries - Source: Journal of Musculoskeletal Pain, Vol 15, #4 2007
Estimates of the Prevalence and Number of Fibromyalgia Syndrome Patients and Their Alpha-1 Antitrypsin Phenotypic Distribution in Ten Countries - Source: Journal of Musculoskeletal Pain, Vol 15, #4 2007: "Estimates of the Prevalence and Number of Fibromyalgia Syndrome Patients and Their Alpha-1 Antitrypsin Phenotypic Distribution"
Alpha-1 Antitrypsin Deficiency - is is an underlying cause of fibromyalgia?
The research concluded: "Our calculations predict that AAT deficiency would remain undetected in around nine percent of FMS patients, with about eight percent of them carrying moderate deficiency phenotypes [MS, SS, and MZ], and less than one percent with severe deficiency phenotypes [SZ and ZZ].
Conclusions: Therefore, AAT phenotype characterization should be recommended in FMS patients and the possible efficacy of AAT replacement therapy in severe deficiency FMS patients should warrant further studies.
Abstract
"Estimates of the Prevalence and Number of Fibromyalgia Syndrome
Patients and Their Alpha-1 Antitrypsin Phenotypic Distribution in Ten
Countries
Journal of Musculoskeletal Pain, Volume: 15, Issue: 4, Page Range:
9-23, 2007
Contributors:
Ignacio Blanco MD, Department of Internal Medicine, Hospital Valle
del Nalón, Langreo, 33920, Spain,
Frederick de Serres PhD, Laboratory of Molecular Toxicology,
Environmental Toxicology Program, National Institute of Environmental
Health Sciences, Research Triangle Park, NC, 27709-2233
Sabina Janciauskiene PhD, Department of Clinical Sciences, Malmö
University Hospital, Malmö, Sweden
Daniel Arbesú PhD, Department of Rehabilitation Medicine, Hospital
Valle del Nalón, Langreo, 33920, Spain
Enrique Fernández-Bustillo PhD, Biostatistics Unit, Hospital
Universitario Central de Asturias, Oviedo, 33006, Spain
Victoriano Cárcaba PhD, Department of Internal Medicine, Hospital
Valle del Nalón, Langreo, 33920, Spain
Izabela Nita PhD, Department of Clinical Sciences, Malmö University
Hospital, Malmö, 20502, Sweden
Aurora Astudillo PhD, Department of Pathology, Hospital Universitario
Central de Asturias, Oviedo, 33006, Spain
Objectives: During the last few years, clinical, epidemiological, and
pathological evidence has suggested that inherited alpha-1
antitrypsin [AAT] deficiency might play a role in the development of
the fibromyalgia syndrome [FMS], probably because of the loss of AAT
anti-inflammatory efficacy. The objective of this study was to
estimate the prevalence and number of FMS patients, and their AAT
phenotypic distribution worldwide.
Methods: A critical review selecting reliable studies on the subject.
Results: Studies on AAT gene frequencies and FMS prevalence were
retrieved for ten countries worldwide, namely Canada, the United
States of America [USA], Denmark, Finland, Germany, Italy, the
Netherlands, Spain, Sweden, and Pakistan. The severe deficiency Z
allele was found in all these countries, with very high frequencies
in Denmark and Sweden [23 and 27 per 1,000, respectively], high
frequencies in Italy and Spain [16 and 17], intermediate frequencies
in Germany, the Netherlands, Canada, and the USA [10 to 14], and a
low frequency in Pakistan [nine per 1,000]. The calculated prevalence
of AAT deficiency and the number of FMS patients with AAT deficiency
were 1/10 and 25,408 in Canada, 1/11 and 478,681 in the US, 1/9 and
3,124 in Denmark, 1/ 36 and 726 in Finland, 1/16 and 48,523 in
Germany, 1/13 and 84,876 in Italy, 1/15 and 9,639 in the Netherlands,
1/4 and 114,359 in Spain, 1/11 and 9,065 in Sweden, and 1/25 and
85,965 in Pakistan. Our calculations predict that AAT deficiency
would remain undetected in around nine percent of FMS patients, with
about eight percent of them carrying moderate deficiency phenotypes
[MS, SS, and MZ], and less than one percent with severe deficiency
phenotypes [SZ and ZZ].
Conclusions: Therefore, AAT phenotype characterization should be
recommended in FMS patients and the possible efficacy of AAT
replacement therapy in severe deficiency FMS patients should warrant
further studies"
Alpha-1 Antitrypsin Deficiency - is is an underlying cause of fibromyalgia?
The research concluded: "Our calculations predict that AAT deficiency would remain undetected in around nine percent of FMS patients, with about eight percent of them carrying moderate deficiency phenotypes [MS, SS, and MZ], and less than one percent with severe deficiency phenotypes [SZ and ZZ].
Conclusions: Therefore, AAT phenotype characterization should be recommended in FMS patients and the possible efficacy of AAT replacement therapy in severe deficiency FMS patients should warrant further studies.
Abstract
"Estimates of the Prevalence and Number of Fibromyalgia Syndrome
Patients and Their Alpha-1 Antitrypsin Phenotypic Distribution in Ten
Countries
Journal of Musculoskeletal Pain, Volume: 15, Issue: 4, Page Range:
9-23, 2007
Contributors:
Ignacio Blanco MD, Department of Internal Medicine, Hospital Valle
del Nalón, Langreo, 33920, Spain,
Frederick de Serres PhD, Laboratory of Molecular Toxicology,
Environmental Toxicology Program, National Institute of Environmental
Health Sciences, Research Triangle Park, NC, 27709-2233
Sabina Janciauskiene PhD, Department of Clinical Sciences, Malmö
University Hospital, Malmö, Sweden
Daniel Arbesú PhD, Department of Rehabilitation Medicine, Hospital
Valle del Nalón, Langreo, 33920, Spain
Enrique Fernández-Bustillo PhD, Biostatistics Unit, Hospital
Universitario Central de Asturias, Oviedo, 33006, Spain
Victoriano Cárcaba PhD, Department of Internal Medicine, Hospital
Valle del Nalón, Langreo, 33920, Spain
Izabela Nita PhD, Department of Clinical Sciences, Malmö University
Hospital, Malmö, 20502, Sweden
Aurora Astudillo PhD, Department of Pathology, Hospital Universitario
Central de Asturias, Oviedo, 33006, Spain
Objectives: During the last few years, clinical, epidemiological, and
pathological evidence has suggested that inherited alpha-1
antitrypsin [AAT] deficiency might play a role in the development of
the fibromyalgia syndrome [FMS], probably because of the loss of AAT
anti-inflammatory efficacy. The objective of this study was to
estimate the prevalence and number of FMS patients, and their AAT
phenotypic distribution worldwide.
Methods: A critical review selecting reliable studies on the subject.
Results: Studies on AAT gene frequencies and FMS prevalence were
retrieved for ten countries worldwide, namely Canada, the United
States of America [USA], Denmark, Finland, Germany, Italy, the
Netherlands, Spain, Sweden, and Pakistan. The severe deficiency Z
allele was found in all these countries, with very high frequencies
in Denmark and Sweden [23 and 27 per 1,000, respectively], high
frequencies in Italy and Spain [16 and 17], intermediate frequencies
in Germany, the Netherlands, Canada, and the USA [10 to 14], and a
low frequency in Pakistan [nine per 1,000]. The calculated prevalence
of AAT deficiency and the number of FMS patients with AAT deficiency
were 1/10 and 25,408 in Canada, 1/11 and 478,681 in the US, 1/9 and
3,124 in Denmark, 1/ 36 and 726 in Finland, 1/16 and 48,523 in
Germany, 1/13 and 84,876 in Italy, 1/15 and 9,639 in the Netherlands,
1/4 and 114,359 in Spain, 1/11 and 9,065 in Sweden, and 1/25 and
85,965 in Pakistan. Our calculations predict that AAT deficiency
would remain undetected in around nine percent of FMS patients, with
about eight percent of them carrying moderate deficiency phenotypes
[MS, SS, and MZ], and less than one percent with severe deficiency
phenotypes [SZ and ZZ].
Conclusions: Therefore, AAT phenotype characterization should be
recommended in FMS patients and the possible efficacy of AAT
replacement therapy in severe deficiency FMS patients should warrant
further studies"
Tuesday, July 22, 2008
Speed of Mental Operations in Fibromyalgia: A Selective Naming Speed Deficit - Source: Journal of Clinical Rheumatology, Jul 17, 2008
Speed of Mental Operations in Fibromyalgia: A Selective Naming Speed Deficit - Source: Journal of Clinical Rheumatology, Jul 17, 2008: "Objective: Abnormal processing of information in fibromyalgia may hold clues to brain abnormalities in this illness.
The purpose of this study is to examine the speed of mental operations in people with the fibromyalgia syndrome (FMS) under the pressure of time.
The central question addresses whether FMS is associated with processing speed deficits across a spectrum of speeded tasks."
The researchers found that "more than 49% of FMS patients tested as impaired (>1.67 SD below normative mean) on 2 specific validated speed tasks (reading words and naming colors)"
I know my word recognition function is getting worse all the time and finding words has been a problem for some time. . .
The article concludes "Abnormalities in naming speed are an unappreciated feature of FMS.
Selective deficits in naming speed in association with otherwise well preserved global processing speed set patients with FMS apart from controls with memory complaints.
Clinicians would be wise to specifically request adding a rapid naming test such as the Stroop Test to the cognitive battery; to document cognitive dysfunction in FMS patients who otherwise appear to test normally, despite often intense complaints of memory and concentration difficulties that can affect job performance and increase disability."
Try the stroop test here: I will later today...
Tiscali - Stroop: "The Stroop Test was devised by John Ridley Stroop to challenge the way we react when given two conflicting signals.
This area is located in the area of the brain called the anterior cingulate (thought processes and emotional responses).
The test also challenges the cognitive mechanism (called inhibition) which means we have to stop one response and say or do something else.
For example if the word red is written in yellow we will be more likely to say the word red than the colour in which the word appears (yellow).
The test asks you to say out loud the colour you see and not the word you read. It sounds easy but it's much harder than you think"
The purpose of this study is to examine the speed of mental operations in people with the fibromyalgia syndrome (FMS) under the pressure of time.
The central question addresses whether FMS is associated with processing speed deficits across a spectrum of speeded tasks."
The researchers found that "more than 49% of FMS patients tested as impaired (>1.67 SD below normative mean) on 2 specific validated speed tasks (reading words and naming colors)"
I know my word recognition function is getting worse all the time and finding words has been a problem for some time. . .
The article concludes "Abnormalities in naming speed are an unappreciated feature of FMS.
Selective deficits in naming speed in association with otherwise well preserved global processing speed set patients with FMS apart from controls with memory complaints.
Clinicians would be wise to specifically request adding a rapid naming test such as the Stroop Test to the cognitive battery; to document cognitive dysfunction in FMS patients who otherwise appear to test normally, despite often intense complaints of memory and concentration difficulties that can affect job performance and increase disability."
Try the stroop test here: I will later today...
Tiscali - Stroop: "The Stroop Test was devised by John Ridley Stroop to challenge the way we react when given two conflicting signals.
This area is located in the area of the brain called the anterior cingulate (thought processes and emotional responses).
The test also challenges the cognitive mechanism (called inhibition) which means we have to stop one response and say or do something else.
For example if the word red is written in yellow we will be more likely to say the word red than the colour in which the word appears (yellow).
The test asks you to say out loud the colour you see and not the word you read. It sounds easy but it's much harder than you think"
Monday, July 21, 2008
Cymbalta Receives Approval for Fibromyalgia - Health - redOrbit
Lilly's Cymbalta Receives Approval for Fibromyalgia - Health - redOrbit: "Cymbalta Receives Approval for Fibromyalgia
The U.S. Food and Drug Administration's clearance allows Lilly to sell Cymbalta for symptoms of fibromyalgia, a little-understood ailment that causes debilitating pain and fatigue.
Cymbalta, which Lilly expects to be its top-selling drug in the United States this year, is also used to treat depression, anxiety and diabetic pain.
The medicine generated $2.1 billion in sales last year, and will compete with Pfizer Inc.'s pain medicine Lyrica, which was approved for fibromyalgia in June 2007.
Lyrica, also sold for nerve pain from shingles and diabetes, had sales of $1.8 billion in 2007. It is the only other medicine approved for fibromyalgia.
Although Cymbalta's exact mechanism of action is unknown, Wohlreich thinks the drug affects fibromyalgia by helping the brain "quiet down" pain messages coming from a patient's body. With fibromyalgia, the brain's ability to block out pain messages appears not to work correctly"
I wonder if either of these treatments are available in the UK and wether they would do any more for me than the cocktail I now take?
The U.S. Food and Drug Administration's clearance allows Lilly to sell Cymbalta for symptoms of fibromyalgia, a little-understood ailment that causes debilitating pain and fatigue.
Cymbalta, which Lilly expects to be its top-selling drug in the United States this year, is also used to treat depression, anxiety and diabetic pain.
The medicine generated $2.1 billion in sales last year, and will compete with Pfizer Inc.'s pain medicine Lyrica, which was approved for fibromyalgia in June 2007.
Lyrica, also sold for nerve pain from shingles and diabetes, had sales of $1.8 billion in 2007. It is the only other medicine approved for fibromyalgia.
Although Cymbalta's exact mechanism of action is unknown, Wohlreich thinks the drug affects fibromyalgia by helping the brain "quiet down" pain messages coming from a patient's body. With fibromyalgia, the brain's ability to block out pain messages appears not to work correctly"
I wonder if either of these treatments are available in the UK and wether they would do any more for me than the cocktail I now take?
Tuesday, July 15, 2008
Relationship Between Fibromyalgia and Major Depressive Disorder: a Comprehensive Review
DFW_CFIDS - The Relationship Between Fibromyalgia and Major Depressive Disorder: a Comprehensive Review: "The Relationship Between Fibromyalgia and Major Depressive Disorder"
A large body of evidence suggests that the relationship between major depressive disorder (MDD) and fibromyalgia (FM) is complex. Improved understanding of this relationship promises to provide clinicians with better assessment and treatment options for both disorders. . .
METHODS
This paper reviews research on the prevalence, etiology and pathogenesis, clinical characterization, and treatment of FM and MDD, as well as studies that examined the relationship between these disorders. Studies were identified via PubMed literature search.
RESULTS
Our findings point to substantial similarities in neuroendocrine abnormalities, psychological characteristics, physical symptoms and treatments between FM and MDD. However, currently available findings do not support the assumption that MDD and FM refer to the same underlying construct or can be seen as subsidiaries of one disease concept.
CONCLUSION
New methodological and theoretical approaches may lead to a better understanding of the link between FM and MDD, and to more effective psychological and psychopharmacological therapies for FM patients. In the meantime, clinicians should carefully screen for a history of MDD in patients with FM.
Source: The relationship between fibromyalgia and major depressive disorder: a comprehensive review. Curr Med Res Opin. 2008 Jul 4;
Authors: Pae CU, Luyten P, Marks DM, Han C, Park SH, Patkar AA, Masand PS, Van Houdenhove"
So a complex relationship indeed, I certainly agree with that having spent months in a psychiatric hospital, almost a zombie until ECT seemed to bring me back to life just a little bit.
I have never fully recovered and struggle to fight off further reactive depression caused by pain and isolation. A When every day is a struggle it makes my life very little....and very hard to look forward to anything
A large body of evidence suggests that the relationship between major depressive disorder (MDD) and fibromyalgia (FM) is complex. Improved understanding of this relationship promises to provide clinicians with better assessment and treatment options for both disorders. . .
METHODS
This paper reviews research on the prevalence, etiology and pathogenesis, clinical characterization, and treatment of FM and MDD, as well as studies that examined the relationship between these disorders. Studies were identified via PubMed literature search.
RESULTS
Our findings point to substantial similarities in neuroendocrine abnormalities, psychological characteristics, physical symptoms and treatments between FM and MDD. However, currently available findings do not support the assumption that MDD and FM refer to the same underlying construct or can be seen as subsidiaries of one disease concept.
CONCLUSION
New methodological and theoretical approaches may lead to a better understanding of the link between FM and MDD, and to more effective psychological and psychopharmacological therapies for FM patients. In the meantime, clinicians should carefully screen for a history of MDD in patients with FM.
Source: The relationship between fibromyalgia and major depressive disorder: a comprehensive review. Curr Med Res Opin. 2008 Jul 4;
Authors: Pae CU, Luyten P, Marks DM, Han C, Park SH, Patkar AA, Masand PS, Van Houdenhove"
So a complex relationship indeed, I certainly agree with that having spent months in a psychiatric hospital, almost a zombie until ECT seemed to bring me back to life just a little bit.
I have never fully recovered and struggle to fight off further reactive depression caused by pain and isolation. A When every day is a struggle it makes my life very little....and very hard to look forward to anything
Wednesday, July 09, 2008
How to Explain Fibromyalgia to Your Friends & Family
What I now reckon was my first huge fibro flare up hit me while a post graduate student at Durham University on a university scholarship because of glowing undergraduate performance, diagnosed as depression - I actually went to my GP and said I thought I was depressed following a strange condition where the bottom of my legs and ankles where swollen red and itchy, doc diagnosed a virus and it was downhill all the way from there such that just trying to walk to the library was like wading through treacle, my concentration, analytical ability and previously red hot memory became just that, a memory. Eighteen years on I am unable to work and have to always pace myself to try to avoid flare ups, but the strangest events or conditions can bring one on.....have to log off now as my neck is spasming and telling me "enough!"
MedHeadlines » Explaining Fibromyalgia to Your Friends & Family: Explaining Fibromyalgia to Your Friends & Family "When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition."
Oh boy do I know what this is like! I may look well at times but an in pain and unable to think or speak clearly...
"Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel...
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity"
The sleep deprivation is the cream on the top of this awful illness
Fibromyalgia In a Nutshell
"Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
It's NOT psychological "burn out" or depression.
It's NOT laziness.
It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier."
MedHeadlines » Explaining Fibromyalgia to Your Friends & Family: Explaining Fibromyalgia to Your Friends & Family "When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition."
Oh boy do I know what this is like! I may look well at times but an in pain and unable to think or speak clearly...
"Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel...
Understanding the Fatigue of Fibromyalgia
Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.
Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.
With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity"
The sleep deprivation is the cream on the top of this awful illness
Fibromyalgia In a Nutshell
"Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
It's NOT psychological "burn out" or depression.
It's NOT laziness.
It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier."
Wednesday, July 02, 2008
Seven Helpful Tips For Dealing With The Pain Of Fibromyalgia
Seven Helpful Tips For Dealing With The Pain Of Fibromyalgia: "fibromyalgia sufferers endure multiple symptoms including global aching pain, fatigue, irritable bowel syndrome, sleep disturbances, heightened sensitivity to any sensation and depression.
The intensity of the symptoms can vary based on a variety of factors, including stress, weather, physical activity and time of the day. Even with all these symptoms, it can take up to five years for a fibromyalgia patient to get an accurate diagnosis"
In brief the recommendations for coping with fibromyalgia are:
If you think you may have fibromyalgia and are going through a battery of tests to rule out other diseases or if you have been diagnosed with fibromyalgia, you can take seven positive steps to manage your pain.
-- Work with your physician to try different medications
-- Understand your symptoms. Analyze when they occur, the intensity, duration, extenuating circumstances and other factors as well as when the symptoms seem to diminish.
- Develop an exercise regimen, physical therapy program or both. This is counterintuitive. When something hurts, the tendency is to avoid movement. But better muscle conditioning can help manage pain. With fibromyalgia, everything may hurt but there is no actual tissue damage (the cause is largely believed to be linked to the central nervous system).
-- Adjust your diet if your analysis indicates any pattern based on food and beverage consumption.
-- Try acupuncture and holistic approaches.
-- Join a support group
-- Establish a routine and stick to it, adjusting as you learn more about your body and analyze the results of your pain management program.
Since no cure exists, management is key. Know that pain is a part of your life and focus on something other than your physical complaints. Celebrate the success you have in reducing discomfort and you can enjoy a better qualify of life
For me diet changes brought about the biggest improvement in my fibromyalgia symptoms overall...
The intensity of the symptoms can vary based on a variety of factors, including stress, weather, physical activity and time of the day. Even with all these symptoms, it can take up to five years for a fibromyalgia patient to get an accurate diagnosis"
In brief the recommendations for coping with fibromyalgia are:
If you think you may have fibromyalgia and are going through a battery of tests to rule out other diseases or if you have been diagnosed with fibromyalgia, you can take seven positive steps to manage your pain.
-- Work with your physician to try different medications
-- Understand your symptoms. Analyze when they occur, the intensity, duration, extenuating circumstances and other factors as well as when the symptoms seem to diminish.
- Develop an exercise regimen, physical therapy program or both. This is counterintuitive. When something hurts, the tendency is to avoid movement. But better muscle conditioning can help manage pain. With fibromyalgia, everything may hurt but there is no actual tissue damage (the cause is largely believed to be linked to the central nervous system).
-- Adjust your diet if your analysis indicates any pattern based on food and beverage consumption.
-- Try acupuncture and holistic approaches.
-- Join a support group
-- Establish a routine and stick to it, adjusting as you learn more about your body and analyze the results of your pain management program.
Since no cure exists, management is key. Know that pain is a part of your life and focus on something other than your physical complaints. Celebrate the success you have in reducing discomfort and you can enjoy a better qualify of life
For me diet changes brought about the biggest improvement in my fibromyalgia symptoms overall...
Friday, May 23, 2008
Fibromyalgia flare up
Yet again I feel all these symptoms as described by Kirstie Quail including
"Like waking up every morning aching with the flu.
Like menstrual cramps and muscle soreness that never go away.
Like a 10-pound weight on her arm that hurts 10 times more than it should"
It all makes doing anything such a chore requiring huge mental and physical effort which in turn worsens the symptoms so now I lead a very small life without the enrgy to carry out work or leisure activities "normal" folk never think twice about. Could I have had Fibromyalgia all my life or am I just internalising my mothers idea that there has always been something wrong with me?
"Joan Hall, chairwoman of the Fibromyalgia Association of Rochester, said most women in her group weren't diagnosed until middle age, but many noticed pain since childhood.
"They might have called you a crybaby, but you didn't know that," said Hall, 67, who was diagnosed in her 30s but felt distinct pain since she was 17. "I just knew, when it hurt, it hurt bad."
The National Institutes of Health estimates as many as one in 50 Americans has fibromyalgia. Though statistics aren't clear, several studies suggest that the number of children diagnosed with the condition is rising."
"Like waking up every morning aching with the flu.
Like menstrual cramps and muscle soreness that never go away.
Like a 10-pound weight on her arm that hurts 10 times more than it should"
It all makes doing anything such a chore requiring huge mental and physical effort which in turn worsens the symptoms so now I lead a very small life without the enrgy to carry out work or leisure activities "normal" folk never think twice about. Could I have had Fibromyalgia all my life or am I just internalising my mothers idea that there has always been something wrong with me?
"Joan Hall, chairwoman of the Fibromyalgia Association of Rochester, said most women in her group weren't diagnosed until middle age, but many noticed pain since childhood.
"They might have called you a crybaby, but you didn't know that," said Hall, 67, who was diagnosed in her 30s but felt distinct pain since she was 17. "I just knew, when it hurt, it hurt bad."
The National Institutes of Health estimates as many as one in 50 Americans has fibromyalgia. Though statistics aren't clear, several studies suggest that the number of children diagnosed with the condition is rising."
Monday, May 19, 2008
Definition, classification and diagnosis of fibromyalgia syndrome
Article in German by
BACKGROUND: Interdisciplinary guidelines for the definition,
classification and diagnosis of chronic widespread pain (CWP) and
fibromyalgia syndrome (FMS) were developed by collaboration of 10
German medical and psychological associations and 2 patient self-help
organizations.
METHODS: A systematic literature search was performed in the Cochrane
Library (1993-12/2006), Medline (1980-2006), PsychInfo
(1966-12/2006), and Scopus (1980-12/2006). Levels of evidence were
assigned according to the classification system of the Oxford Centre
for Evidence-Based Medicine. Grading of the strength of
recommendation was done according to the German program for disease
management guidelines. Standardized procedures to reach a consensus
on recommendations were used.
RESULTS: CWP is defined by the criteria of the American College of
Rheumatology (ACR - strong consensus). FMS can be diagnosed for
clinical purposes by symptom-based criteria (without tender point
examination) as well as by the ACR criteria (strong consensus).
BACKGROUND: Interdisciplinary guidelines for the definition,
classification and diagnosis of chronic widespread pain (CWP) and
fibromyalgia syndrome (FMS) were developed by collaboration of 10
German medical and psychological associations and 2 patient self-help
organizations.
METHODS: A systematic literature search was performed in the Cochrane
Library (1993-12/2006), Medline (1980-2006), PsychInfo
(1966-12/2006), and Scopus (1980-12/2006). Levels of evidence were
assigned according to the classification system of the Oxford Centre
for Evidence-Based Medicine. Grading of the strength of
recommendation was done according to the German program for disease
management guidelines. Standardized procedures to reach a consensus
on recommendations were used.
RESULTS: CWP is defined by the criteria of the American College of
Rheumatology (ACR - strong consensus). FMS can be diagnosed for
clinical purposes by symptom-based criteria (without tender point
examination) as well as by the ACR criteria (strong consensus).
Wednesday, March 12, 2008
Fibromyalgia Pain And Changes In Brain Molecule Linked
From medical News todayResearchers at the University of Michigan Health System have found a key linkage between pain and a specific brain molecule, a discovery that lends new insight into fibromyalgia, an often-baffling chronic pain condition.
In patients with fibromyalgia, researchers found, pain decreased when levels of the brain molecule called glutamate went down. The results of this study, which appears in the journal Arthritis and Rheumatism, could be useful to researchers looking for new drugs that treat fibromyalgia, the authors say.
"If these findings are replicated, investigators performing clinical treatment trials in fibromyalgia could potentially use glutamate as a 'surrogate' marker of disease response," says lead author Richard E. Harris, Ph.D., research assistant professor in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine and a researcher at the U-M Chronic Pain and Fatigue .Research .Center. . '
Following the four weeks of treatment, both clinical and experimental pain reported were reduced significantly. More importantly the reduction in both pain outcomes was linked with reductions in glutamate levels in the insula: patients with greater reductions in pain showed greater reductions in glutamate. This suggests that glutamate may play a role in this disease and that it could potentially be used as a biomarker of disease severity.
Because of the small number of participants in this study, further research should be conducted to verify the role of glutamate in fibromyalgia, Harris says.
In patients with fibromyalgia, researchers found, pain decreased when levels of the brain molecule called glutamate went down. The results of this study, which appears in the journal Arthritis and Rheumatism, could be useful to researchers looking for new drugs that treat fibromyalgia, the authors say.
"If these findings are replicated, investigators performing clinical treatment trials in fibromyalgia could potentially use glutamate as a 'surrogate' marker of disease response," says lead author Richard E. Harris, Ph.D., research assistant professor in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine and a researcher at the U-M Chronic Pain and Fatigue .Research .Center. . '
Following the four weeks of treatment, both clinical and experimental pain reported were reduced significantly. More importantly the reduction in both pain outcomes was linked with reductions in glutamate levels in the insula: patients with greater reductions in pain showed greater reductions in glutamate. This suggests that glutamate may play a role in this disease and that it could potentially be used as a biomarker of disease severity.
Because of the small number of participants in this study, further research should be conducted to verify the role of glutamate in fibromyalgia, Harris says.
Friday, February 15, 2008
Duloxetine Appears Effective in Treating Patients With Fibromyalgia Syndrome
Doc guide reports: February 18, 2008 -- Patients with fibromyalgia syndrome appear to obtain better pain control with the selective serotonin and norepinephrine reuptake inhibitor duloxetine.
Researchers led by Madelaine Wohlreich, MD, Medical Advisor, Eli Lilly and Company, Indianapolis, Indiana, United States, attempted to determine whether treatment with duloxetine 120 mg daily for 3 months could reduce pain severity in patients with fibromyalgia syndrome.
"Duloxetine 60 mg daily and 120 mg daily were superior to placebo during the 3-month treatment period on the coprimary measures, both in brief pain inventory average pain score and the patient's global impressions of improvement," Dr. Wohlreich said in her poster presentation February 14 here at the American Academy of Pain Medicine (AAPM) 24th Annual Meeting.
Researchers led by Madelaine Wohlreich, MD, Medical Advisor, Eli Lilly and Company, Indianapolis, Indiana, United States, attempted to determine whether treatment with duloxetine 120 mg daily for 3 months could reduce pain severity in patients with fibromyalgia syndrome.
"Duloxetine 60 mg daily and 120 mg daily were superior to placebo during the 3-month treatment period on the coprimary measures, both in brief pain inventory average pain score and the patient's global impressions of improvement," Dr. Wohlreich said in her poster presentation February 14 here at the American Academy of Pain Medicine (AAPM) 24th Annual Meeting.
Thursday, February 14, 2008
Fibromyalgia and sleep
or rather the lack of....having a really rough time of it at present, what with a touch of the black dogs hounding me again and the usual frequent waking I now also have to cope with him indoors truly deafening snoring and sleep walking.....Jeez, if I managed half an hour deep sleep last night I would be very surprised.
"Good quality sleep is a bedrock of fibromyalgia treatment. Studies have shown that sleep deprivation can induce fibromyalgia-like symptoms. Many people with fibromyalgia suffer from sleep abnormalities and often awake feeling as if they had not slept at all. This is called nonrestorative sleep. There are many different medicines that can improve sleep quality. It may take several tries to find the ones that work best for each individual. The recommended approach is to begin with small doses of medicine to see how they are tolerated, then increase as needed. The goal is to improve sleep without introducing unpleasant side effects"
Mayo clinic on fibromyalgia and sleep
"Fatigue and sleep disturbances. People with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep. Some studies suggest that this sleep problem is the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. So people with fibromyalgia miss the deep restorative stage of sleep. Nighttime muscle spasms in your legs and restless legs syndrome also may be associated with fibromyalgia."
"Good quality sleep is a bedrock of fibromyalgia treatment. Studies have shown that sleep deprivation can induce fibromyalgia-like symptoms. Many people with fibromyalgia suffer from sleep abnormalities and often awake feeling as if they had not slept at all. This is called nonrestorative sleep. There are many different medicines that can improve sleep quality. It may take several tries to find the ones that work best for each individual. The recommended approach is to begin with small doses of medicine to see how they are tolerated, then increase as needed. The goal is to improve sleep without introducing unpleasant side effects"
Mayo clinic on fibromyalgia and sleep
"Fatigue and sleep disturbances. People with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep. Some studies suggest that this sleep problem is the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. So people with fibromyalgia miss the deep restorative stage of sleep. Nighttime muscle spasms in your legs and restless legs syndrome also may be associated with fibromyalgia."
Wednesday, February 06, 2008
New hope for fibromyalgia sufferers
New hope for fibromyalgia sufferersAs many as 10 million Americans suffer from fibromyalgia, a chronic condition most noted by pain and fatigue. Despite a host of symptoms, experts say it is often misdiagnosed and misunderstood -- even by doctors. But now, new research is leading to new hope.
Experts say one problem is not all doctors are familiar with the condition. The symptoms are often vague and seem unrelated, and conventional tests typically come back normal.
"It doesn't have any markers to standard blood tests or x-rays. There's nothing in the blood that says, 'I have fibromyalgia.' There's nothing you're going to see on an x-ray," said fibromyalgia researcher Dr. Patrick Wood.
"It's a diagnosis of exclusion. Once you rule out more organic causes, diagnosis of fibromyalgia comes in," said rheumatologist Dr. Dan La.
Fibromyalgia was first identified more than 10 years ago. Yet there are still doctors who question whether the condition exists. Some suggest the symptoms are psychosomatic.
"There are still doctors who feel that," said Dr. La. "From my standpoint, I've seen these patients, some science behind it as well."
The exact cause isn't known, but some experts think stress or genetics may play a role. And while it's considered a muscle and joint condition, the majority of research - like that conducted by Dr. Wood - focuses on the brain.
"Changes in brain chemistry and levels of chemicals, such as dopamine or serotonin, are believed to be implicated," said Dr. Wood.
Recently, the FDA approved Lyrica as the first drug to treat fibromyalgia. Dr La says it's working for half of the patients he's prescribed it for.
Patients hope the FDA's move to approve Lyrica has legitimized the syndrome in the eyes of skeptics.
Experts say one problem is not all doctors are familiar with the condition. The symptoms are often vague and seem unrelated, and conventional tests typically come back normal.
"It doesn't have any markers to standard blood tests or x-rays. There's nothing in the blood that says, 'I have fibromyalgia.' There's nothing you're going to see on an x-ray," said fibromyalgia researcher Dr. Patrick Wood.
"It's a diagnosis of exclusion. Once you rule out more organic causes, diagnosis of fibromyalgia comes in," said rheumatologist Dr. Dan La.
Fibromyalgia was first identified more than 10 years ago. Yet there are still doctors who question whether the condition exists. Some suggest the symptoms are psychosomatic.
"There are still doctors who feel that," said Dr. La. "From my standpoint, I've seen these patients, some science behind it as well."
The exact cause isn't known, but some experts think stress or genetics may play a role. And while it's considered a muscle and joint condition, the majority of research - like that conducted by Dr. Wood - focuses on the brain.
"Changes in brain chemistry and levels of chemicals, such as dopamine or serotonin, are believed to be implicated," said Dr. Wood.
Recently, the FDA approved Lyrica as the first drug to treat fibromyalgia. Dr La says it's working for half of the patients he's prescribed it for.
Patients hope the FDA's move to approve Lyrica has legitimized the syndrome in the eyes of skeptics.
Thursday, December 27, 2007
Drug treatments for Fibromyalgia
Co Cure report: Fibromyalgia syndrome (FM) is a condition of chronic and diffuse
muscular pain affecting particularly middle aged women. The aetiology
of FM is not completely understood and it is currently considered a
disorder of pain regulation.
The most efficacious compounds include the tricyclic drugs and mixed
reuptake inhibitors. Recent works suggest that the anticonvulsant
medications pregabalin and gabapentin are also effective. Moreover,
two serotonin and norepinephrine-reuptake inhibitors-duloxetine and
milnacipran show encouraging results in treating FM symptoms.
The results of clinical trials of anti-inflammatory medications have
been generally disappointing, but three RCTs have found that tramadol
(with or without acetaminophen) is effective in FM.
Personnally I have benefited from taking the max dose of nortryptaline which has improved my sleep hugely though not cleared all problems as evidenced by being up from 4am today after waking a huge number of times. . rough day ahead especially as will be visiting mum who had a very bad day yesterday with new pains requiring extra morphine...
muscular pain affecting particularly middle aged women. The aetiology
of FM is not completely understood and it is currently considered a
disorder of pain regulation.
The most efficacious compounds include the tricyclic drugs and mixed
reuptake inhibitors. Recent works suggest that the anticonvulsant
medications pregabalin and gabapentin are also effective. Moreover,
two serotonin and norepinephrine-reuptake inhibitors-duloxetine and
milnacipran show encouraging results in treating FM symptoms.
The results of clinical trials of anti-inflammatory medications have
been generally disappointing, but three RCTs have found that tramadol
(with or without acetaminophen) is effective in FM.
Personnally I have benefited from taking the max dose of nortryptaline which has improved my sleep hugely though not cleared all problems as evidenced by being up from 4am today after waking a huge number of times. . rough day ahead especially as will be visiting mum who had a very bad day yesterday with new pains requiring extra morphine...
Tuesday, October 23, 2007
Depression linked to allergies in kids
Wow, having had excema and hay fever plus underlying dairy intolerance this is really of interest to me..
Reuters Health - "Research in psychiatrically ill children and adolescents suggests that those with depression, anxiety and other so-called "internalizing" disorders are more likely to have allergies.
Among a sample of 184 young people being evaluated for psychiatric disorders and allergies, 105 (57 percent) had a history of allergic disorders, including asthma, hay fever, hives and eczema...
Researchers found that youth with internalizing disorders were almost twice as likely to have a history of allergies than those with a diagnosis that wasn't classified as an internalizing or externalizing disorder...
"These findings add to the growing body of evidence supporting an association between anxiety, depressive, and allergic disorders," write Dr. Mauricio Infante and colleagues from University of Wisconsin, Madison in the Journal of Clinical Psychiatry.
The findings also suggest that these psychiatric and medical disorders "may share risk factors and underlying pathways that contribute to the development of both types of disorders."
The Wisconsin team notes that studies are needed to identify the reasons for these associations so that effective treatment and prevention strategies that target both disorders can be developed."
Reuters Health - "Research in psychiatrically ill children and adolescents suggests that those with depression, anxiety and other so-called "internalizing" disorders are more likely to have allergies.
Among a sample of 184 young people being evaluated for psychiatric disorders and allergies, 105 (57 percent) had a history of allergic disorders, including asthma, hay fever, hives and eczema...
Researchers found that youth with internalizing disorders were almost twice as likely to have a history of allergies than those with a diagnosis that wasn't classified as an internalizing or externalizing disorder...
"These findings add to the growing body of evidence supporting an association between anxiety, depressive, and allergic disorders," write Dr. Mauricio Infante and colleagues from University of Wisconsin, Madison in the Journal of Clinical Psychiatry.
The findings also suggest that these psychiatric and medical disorders "may share risk factors and underlying pathways that contribute to the development of both types of disorders."
The Wisconsin team notes that studies are needed to identify the reasons for these associations so that effective treatment and prevention strategies that target both disorders can be developed."
Monday, September 24, 2007
Virus Identified in Patients with Chronic Fatigue Syndrome
Could this be the virus I had all those years ago which heralded 20 years of pain, depression and very very poor health?
If this virus proves to be diagnostic of the various types of chronic fatigue will the CBT approach take a back seat and medical intervention become possible? I hope so!
National CFIDS Foundation, Inc. (NCF) of Needham
"Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy"
Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic Afflictions, LLC has discovered a major neuropathogen identified as an RNA virus designated as Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of neurological disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy of unknown cause.
Dr. Robbins had determined that 96% of the blood samples and 91% of the spinal fluid samples tested positively for Cryptovirus specific antibodies in these CFS patients.
The NCF has conducted its own preliminary research into the potential role of Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded research first confirmed the lack of a vital protein, known as Stat-1, in the blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable role in immunity.
If this virus proves to be diagnostic of the various types of chronic fatigue will the CBT approach take a back seat and medical intervention become possible? I hope so!
National CFIDS Foundation, Inc. (NCF) of Needham
"Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy"
Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic Afflictions, LLC has discovered a major neuropathogen identified as an RNA virus designated as Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of neurological disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy of unknown cause.
Dr. Robbins had determined that 96% of the blood samples and 91% of the spinal fluid samples tested positively for Cryptovirus specific antibodies in these CFS patients.
The NCF has conducted its own preliminary research into the potential role of Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded research first confirmed the lack of a vital protein, known as Stat-1, in the blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable role in immunity.
Monday, August 13, 2007
Pfizer om: The Painful Truth About Fibromyalgia
Sponsored by a drug company but anything that raises awareness about fibromyalgia is to be welcomed...
Fibromyalgia affects more than six
million Americans, and is the most common chronic pain condition in the
U.S. Now there is a new educational campaign designed to raise public
awareness, correct misperceptions and offer support to the millions of
people living with fibromyalgia. Lynne Matallana, Founder and President of
the National Fibromyalgia Association (NFA), has more on what is being done
to educate the public about this disease.
Listen to this report from Pfizer at:
http://media.medialink.com/WebNR.aspx?story=33693
Fibromyalgia affects more than six
million Americans, and is the most common chronic pain condition in the
U.S. Now there is a new educational campaign designed to raise public
awareness, correct misperceptions and offer support to the millions of
people living with fibromyalgia. Lynne Matallana, Founder and President of
the National Fibromyalgia Association (NFA), has more on what is being done
to educate the public about this disease.
Listen to this report from Pfizer at:
http://media.medialink.com/WebNR.aspx?story=33693
Thursday, July 12, 2007
DWP new medical guidance on ME/CFS
The ME Association provide a copy of New DPW medical guidance on ME/CFS - essential informationn for anyone with ME/CFS or even Fibromyalgia who has to undergo DWP medical examinations in oreder to claim benefits.
Version 10 of this new medical guidance on ME/CFS, which will come into effect fairly shortly for the purpose of assisting DWP officials when assessing Disability Living Allowance (DLA) and Carer's Allowance applications, is now available in the 'Latest News' section of the MEA website.
DWP MEDICAL GUIDANCE – VERSION 10 (May 2007)
CHRONIC FATIGUE SYNDROME AND MYALGIC ENCEPHALOMYELITIS/ENCEPHALOPATHY
What is it? (Definition)
1. The term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability. A characteristic feature is fatigue/malaise that follows minimal exertion. People with CFS often describe the fatigue as being of a type and a scale beyond any other they have experienced. The illness may affect both physical and mental functioning, including cognitive function. Accompanying symptoms may include poor sleep, pain, poor concentration and memory, although this list is not exhaustive.
2. Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME) and post-viral fatigue syndrome. There is some difference of opinion over whether ME is different from CFS; however, most authorities refer to the condition as CFS/ME.
3. The symptom of fatigue is a feeling that can sometimes be difficult to describe and to measure. It is a feeling of exceptional or abnormal tiredness or lack of energy in excess of that anticipated in response to current activity. Fatigability in CFS/ME is the overwhelming feeling of exceptional tiredness exacerbated by exertion. CFS/ME is identified by its symptoms and disabling effects, and by excluding other medical conditions that could explain them. There are no confirmatory abnormal findings on physical examination, nor is there any specific investigation such as an abnormal blood test that is diagnostic. This does not mean that CFS/ME is not a real illness, and all medical authorities now accept the illness as being a severe and valid condition.
4. A consensus definition of CFS/ME has been agreed by international experts for the purposes of research and includes the following:-
A complaint of:
_ Persistent or relapsing fatigue for 6 months or more that is
_ Of new or definite onset
_ Not the result of ongoing exertion
_ Not substantially alleviated by rest
_ Results in a substantial reduction in previous levels of occupational, education, social or personal activities
_ Four or more of the following symptoms for 6 months or more
_ Impaired short term memory or concentration
_ Sore throat
_ Tender lymph nodes (neck or armpits)
_ Muscle pain
_ Pains in a number of joints (without arthritis)
_ New headache
_ Unrefreshing sleep
_ Malaise after exercise lasting more than 24 hours
_ Other physical causes of fatigue such as anaemia, thyroid disease, sleep apnoea, malignancy, liver disease etc. are excluded
_ Major mental health disorders are excluded, although as with other chronic conditions, people with CFS/ME may have conditions such as depression and generalised anxiety disorder occurring at the same time.
5. A number of other medical conditions such as fibromyalgia, irritable bowel disease, and migraine may also occur in people with CFS/ME. These have some symptoms in common with those described in CFS/ME.
How common is CFS/ME?
6. It is estimated that around 1 in 200 of the UK population have CFS/ME. It is predominantly a disease of young adults (commonest incidence between 25 to 50 years) and occurs in all socio-economic groups. It appears to be more common in women [female: male 2:1 or 3:2].
What is the cause?
7. A specific cause of CFS/ME has not as yet been identified. Possible causes of the condition have been the subject of much debate. It is likely that the term CFS/ME describes a spectrum of disorders in which physical and mental functioning are affected. In some cases infectious illnesses like glandular fever may trigger the onset of the condition. There is no evidence however that persistent infection is responsible for the continuation of the illness. Although the cause is not fully understood, changes associated with CFS/ME may include an altered stress hormone response, altered immune response, altered gene expression, sleep problems, alterations of mood, and coping strategies. Different factors are likely to be important in different people at different times.
What are the risks for developing and maintaining CFS/ME?
8. Although the cause of CFS/ME is unclear, certain factors may be important in its development. These are usefully divided into predisposing, triggering and maintaining factors. Some people may be predisposed to the condition, for example because of their genetic makeup, or gender. For example the condition is commoner in young women. An infectious disease such as glandular fever (infectious mononucleosis) or a major physical illness may trigger the condition. Other stressful life events or difficulties may precede development of CFS/ME, particularly if the stress is ongoing.. Finally some other factors may help to keep the illness going. For example, poor sleep, poor nutritional uptake, or a concurrent mood disorder.
Clinical features
9. The main symptoms are persistent mental and physical fatigue, tiredness or exhaustion that are characteristically made worse by activity. People often do not sleep well and find that sleep fails to refresh them. Often they feel symptoms more after physical or mental activity, even minor exertion within the home environment, and this effect is characteristically delayed until the next day or so, and is prolonged. Muscles and joints ache and are painful. Headaches, sore throat and tender lymph glands in the neck and armpits are described. People with the condition also report short-term memory loss and poor concentration. Their mood may fluctuate and they may be prone to feelings of anxiety. Hypersensitivity to everyday levels of noise and light are reported.
10. People with CFS/ME often describe variation in the level of symptoms and disability. Symptoms of fatigue and pain may vary in their severity during the course of the day, or may be considerably worse for several days after undertaking unaccustomed levels of physical or mental activities, even if these involve relatively simple tasks. Patients may be able to undertake a task for a short period of time, but then be unable to sustain or repeat it..
11. Those whose symptoms are mild may continue to undertake a range of normal daily activities. Some people will be able to carry out their occupation but have to reduce their social activities. Those with more severe forms of the condition are unlikely to be able to continue at work or in education. Daily living activities, hobbies, interests and social interaction are also likely to be considerably reduced. In the most severe cases the individual may spend almost all of the day resting, or be bed-ridden. Some people may use a wheelchair outside to minimise the fatigue and symptoms such as joint/muscle pain, or problems with dizziness/balance, engendered by walking.
12. Between a quarter and a half of people with CFS/ME are in part-time or full time employment or education. When compared to people with other diseases like diabetes mellitus or arthritis seen in hospital clinics many people with CFS/ME are on average more disabled.
13. Physical examination is normal in most cases. Some people may have postural hypotension. (Normally blood pressure is lower when sitting or lying in bed, on standing up it rises. In some people, in particular the elderly, there is a lag phase - a time interval - during which the pressure rises to the higher level. This may be experienced as a sensation of dizziness or light headedness, and sometimes in the elderly leads to falls). Those who are the most chronically and severely disabled may have some observable generalised muscle wasting, most likely to be found in the lower limbs, although this is unusual.
Is CFS/ME a physical illness?
14. There has previously been much debate as to whether CFS/ME is a physical illness or not. Some researchers have put forward the argument that it is a purely psychological disorder, citing in evidence the high rate of co-morbid depression. Others are equally sure that it is purely physical, citing the abnormal hormonal tests found in some or the triggering of the illness by certain infections. Both views are oversimplifications. The reality is that the disability of CFS/ME involves both physical and mental incapacity and it is important to ensure full consideration is given to all the disabling effects of the illness and an accurate assessment of care and mobility needs is made."
15.For the purpose of DLA, however, the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered "physical". For this purpose, CFS/ME is "physical".
Management
16. Several different approaches have been used to manage this condition. There is no cure and treatment is aimed at managing the effects of the illness to improve both physical and mental function. No one approach is effective in all cases.
17. Management starts with the diagnosis and an explanation of why a patient is still ill. An explanation that CFS/ME may be progressive in some patients, but is not life threatening is an important initial step. No specific drug treatments are available. A collaborative and concordant approach to managing the condition is used where doctor and patient discuss the different options with a view to reducing symptoms and disability. The aim of management is to enable the person to improve their quality of life by returning in a gradual way to usual daily activities, education or work. It is helpful to address both the physical and mental effects of the illness, and to minimise the results of over exertion or prolonged inactivity, and revise a "boom and bust" pattern of activity. A variety of forms of management as described below may be tried, either individually or in combination. All involve establishing a sustainable baseline of activity as the first step.
Graded exercise therapy and graded activity therapy
18. Supervised and gradually increasing physical and cognitive activity will enable the majority of people to improve, and some to return to a normal level of functioning. This is likely to be undertaken with the help of an appropriately trained physiotherapist (using graded exercise therapy) or an occupational therapist (using life style management) often within a hospital or clinic setting. Caution is required since over-activity, or increasing at too fast a rate, may lead to relapses. Unsupervised or inappropriately supervised therapy can sometimes also cause relapses. Research suggests that this approach is helpful in the majority of adult ambulant patients.
Cognitive behavioural therapy
19. Cognitive behaviour therapy (CBT) is used in CFS/ME to help people to examine their interpretation of symptoms such as fatigue or muscle pain, which they may perceive as damaging to their bodies, and as a result avoid activities that appear to precipitate them. People are encouraged to view such symptoms as reversible physical and psychological processes rather than evidence of a fixed or progressive disease process, by trying out a mutually agreed programme of graded activities, which help to challenge these beliefs. Understanding the illness, addressing fears and where appropriate reinterpreting the disabling symptoms allows the person to make a gradual improvement in their level of functioning and well being. Sleep is improved and mutually agreed graded increases in activity become possible over some weeks or months. Research suggests that this approach is helpful in the majority of adult and adolescent outpatients.
Pacing
20. Pacing is a lifestyle management approach in which the person with CFS/ME is encouraged to live within the limits of their illness and energy levels carefully balancing their activity and rest, as well as balancing different activities. When possible, activity is increased gradually, but readjusted in the event of symptom exacerbation. Patient group feedback is favourable and a research study is underway to look a the efficiency of the treatment.
Medication
21. Antidepressants may be very helpful in treatment of co-morbid conditions such as depression or insomnia. They can elevate mood or relieve anxiety in standard doses (eg. sertraline, citalopram) or improve sleep and relieve pain in low doses (e.g. amitriptyline, trimipramine). However, antidepressants can have side effects when used at the standard dose required to treat depression; and these sides effects may need to be taken into account. Simple analgesics and non steroidal anti-inflammatory drugs are also used to alleviate persistent pain.
Course of illness and prognosis
22. People with mild illness may recover spontaneously, or with some general advice or a limited treatment programme over the course of the following six months. These people are likely to be treated in a general practice setting.
23. People with established CFS/ME of moderate severity lasting one to two years or more are likely to need a more extensive management programme, as described above, lasting 6 to 12 months or more. Most people who are able to attend hospital for treatment are likely to make a significant improvement with appropriate management.. Some people will recover fully, but others will not achieve their previous level of functioning. Some may not improve. Those who recover may be at risk of recurrence. Those who improve are at risk of relapse. In many patients, disability and quality of life can be improved, sometimes to a significant extent..
24. Severe cases are less likely to recover completely or benefit substantially from a management programme.
25. Indicators of a good prognosis
_ Male sex
_ A definite history of an acute viral illness like glandular fever at the onset
_ Mild disability and few symptoms
_ Clinical features showing a pattern of evolution towards functional recovery
_ Early diagnosis aimed at eliminating associated physical disorders and/or identifying psychiatric illness, along with other complicating psychological or social factors
_ A management approach which may encompass physical, psychological and social elements that allows a stepwise approach to functional improvement, using rehabilitation
26. Indicators of a poor prognosis
_ Onset of symptoms without any clear precipitating factor
_ Clinical features characterised by severe and unremitting symptoms
_ Severe and persistent disability
_ A management approach that overemphasises the importance of either complete rest or which advocates a rapid return to pre-illness levels of physical activity.
_ Those with comorbid significant medical conditions or mood disorders
_ A complex background of adverse psychological and social factors
Functional restrictions
27. The disabling effects of CFS/ME in individuals is variable (see para 9). The following describes the typical problems a with daily living activities for the majority of the time.
28. Mild condition
The person would normally to be able to wash, dress, bathe, use the toilet, get up and downstairs without difficulty. The ability to plan a meal is not impaired and the tasks involving in preparing and cooking food are unlikely to be restricted in any way. The ability to walk long distances may be reduced, but the person is likely to be able to walk short distances on an unrestricted basis most of the time. Their judgment, thought processes and means of communicating are not affected to the extent that they would be unable to find their way around in familiar and unfamiliar places.
29. Moderate condition
Those with a moderate level of disability would be expected to be able to manage some personal care and preparation of food without help from another most of the time. Tasks may take longer than normal and may need to be followed by a period of rest. Although the level of fatigue and symptom severity may vary during the day or from day to day, the ability to maintain personal hygiene and nutrition is likely to be unimpaired. The ability to walk more than 100 metres consistently may be restricted in moderate cases, but severe restriction of walking is unlikely.
30. Severe condition
People with a severe level of disability, who spend most of the day in bed or otherwise immobile, and who may have clinically evident muscle wasting, may well need help with personal care and preparing food. Such claimants may be severely restricted in their ability to walk. There may a requirement for supervision either at home or out of doors as a result of significant cognitive impairment, but it would be uncommon.
ENDS
Version 10 of this new medical guidance on ME/CFS, which will come into effect fairly shortly for the purpose of assisting DWP officials when assessing Disability Living Allowance (DLA) and Carer's Allowance applications, is now available in the 'Latest News' section of the MEA website.
DWP MEDICAL GUIDANCE – VERSION 10 (May 2007)
CHRONIC FATIGUE SYNDROME AND MYALGIC ENCEPHALOMYELITIS/ENCEPHALOPATHY
What is it? (Definition)
1. The term chronic fatigue syndrome (CFS) is used to describe an illness that is characterised by physical and mental fatigue and fatigability. A characteristic feature is fatigue/malaise that follows minimal exertion. People with CFS often describe the fatigue as being of a type and a scale beyond any other they have experienced. The illness may affect both physical and mental functioning, including cognitive function. Accompanying symptoms may include poor sleep, pain, poor concentration and memory, although this list is not exhaustive.
2. Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME) and post-viral fatigue syndrome. There is some difference of opinion over whether ME is different from CFS; however, most authorities refer to the condition as CFS/ME.
3. The symptom of fatigue is a feeling that can sometimes be difficult to describe and to measure. It is a feeling of exceptional or abnormal tiredness or lack of energy in excess of that anticipated in response to current activity. Fatigability in CFS/ME is the overwhelming feeling of exceptional tiredness exacerbated by exertion. CFS/ME is identified by its symptoms and disabling effects, and by excluding other medical conditions that could explain them. There are no confirmatory abnormal findings on physical examination, nor is there any specific investigation such as an abnormal blood test that is diagnostic. This does not mean that CFS/ME is not a real illness, and all medical authorities now accept the illness as being a severe and valid condition.
4. A consensus definition of CFS/ME has been agreed by international experts for the purposes of research and includes the following:-
A complaint of:
_ Persistent or relapsing fatigue for 6 months or more that is
_ Of new or definite onset
_ Not the result of ongoing exertion
_ Not substantially alleviated by rest
_ Results in a substantial reduction in previous levels of occupational, education, social or personal activities
_ Four or more of the following symptoms for 6 months or more
_ Impaired short term memory or concentration
_ Sore throat
_ Tender lymph nodes (neck or armpits)
_ Muscle pain
_ Pains in a number of joints (without arthritis)
_ New headache
_ Unrefreshing sleep
_ Malaise after exercise lasting more than 24 hours
_ Other physical causes of fatigue such as anaemia, thyroid disease, sleep apnoea, malignancy, liver disease etc. are excluded
_ Major mental health disorders are excluded, although as with other chronic conditions, people with CFS/ME may have conditions such as depression and generalised anxiety disorder occurring at the same time.
5. A number of other medical conditions such as fibromyalgia, irritable bowel disease, and migraine may also occur in people with CFS/ME. These have some symptoms in common with those described in CFS/ME.
How common is CFS/ME?
6. It is estimated that around 1 in 200 of the UK population have CFS/ME. It is predominantly a disease of young adults (commonest incidence between 25 to 50 years) and occurs in all socio-economic groups. It appears to be more common in women [female: male 2:1 or 3:2].
What is the cause?
7. A specific cause of CFS/ME has not as yet been identified. Possible causes of the condition have been the subject of much debate. It is likely that the term CFS/ME describes a spectrum of disorders in which physical and mental functioning are affected. In some cases infectious illnesses like glandular fever may trigger the onset of the condition. There is no evidence however that persistent infection is responsible for the continuation of the illness. Although the cause is not fully understood, changes associated with CFS/ME may include an altered stress hormone response, altered immune response, altered gene expression, sleep problems, alterations of mood, and coping strategies. Different factors are likely to be important in different people at different times.
What are the risks for developing and maintaining CFS/ME?
8. Although the cause of CFS/ME is unclear, certain factors may be important in its development. These are usefully divided into predisposing, triggering and maintaining factors. Some people may be predisposed to the condition, for example because of their genetic makeup, or gender. For example the condition is commoner in young women. An infectious disease such as glandular fever (infectious mononucleosis) or a major physical illness may trigger the condition. Other stressful life events or difficulties may precede development of CFS/ME, particularly if the stress is ongoing.. Finally some other factors may help to keep the illness going. For example, poor sleep, poor nutritional uptake, or a concurrent mood disorder.
Clinical features
9. The main symptoms are persistent mental and physical fatigue, tiredness or exhaustion that are characteristically made worse by activity. People often do not sleep well and find that sleep fails to refresh them. Often they feel symptoms more after physical or mental activity, even minor exertion within the home environment, and this effect is characteristically delayed until the next day or so, and is prolonged. Muscles and joints ache and are painful. Headaches, sore throat and tender lymph glands in the neck and armpits are described. People with the condition also report short-term memory loss and poor concentration. Their mood may fluctuate and they may be prone to feelings of anxiety. Hypersensitivity to everyday levels of noise and light are reported.
10. People with CFS/ME often describe variation in the level of symptoms and disability. Symptoms of fatigue and pain may vary in their severity during the course of the day, or may be considerably worse for several days after undertaking unaccustomed levels of physical or mental activities, even if these involve relatively simple tasks. Patients may be able to undertake a task for a short period of time, but then be unable to sustain or repeat it..
11. Those whose symptoms are mild may continue to undertake a range of normal daily activities. Some people will be able to carry out their occupation but have to reduce their social activities. Those with more severe forms of the condition are unlikely to be able to continue at work or in education. Daily living activities, hobbies, interests and social interaction are also likely to be considerably reduced. In the most severe cases the individual may spend almost all of the day resting, or be bed-ridden. Some people may use a wheelchair outside to minimise the fatigue and symptoms such as joint/muscle pain, or problems with dizziness/balance, engendered by walking.
12. Between a quarter and a half of people with CFS/ME are in part-time or full time employment or education. When compared to people with other diseases like diabetes mellitus or arthritis seen in hospital clinics many people with CFS/ME are on average more disabled.
13. Physical examination is normal in most cases. Some people may have postural hypotension. (Normally blood pressure is lower when sitting or lying in bed, on standing up it rises. In some people, in particular the elderly, there is a lag phase - a time interval - during which the pressure rises to the higher level. This may be experienced as a sensation of dizziness or light headedness, and sometimes in the elderly leads to falls). Those who are the most chronically and severely disabled may have some observable generalised muscle wasting, most likely to be found in the lower limbs, although this is unusual.
Is CFS/ME a physical illness?
14. There has previously been much debate as to whether CFS/ME is a physical illness or not. Some researchers have put forward the argument that it is a purely psychological disorder, citing in evidence the high rate of co-morbid depression. Others are equally sure that it is purely physical, citing the abnormal hormonal tests found in some or the triggering of the illness by certain infections. Both views are oversimplifications. The reality is that the disability of CFS/ME involves both physical and mental incapacity and it is important to ensure full consideration is given to all the disabling effects of the illness and an accurate assessment of care and mobility needs is made."
15.For the purpose of DLA, however, the current law means that a claimant cannot be eligible for a higher rate of mobility unless his/her disability is considered "physical". For this purpose, CFS/ME is "physical".
Management
16. Several different approaches have been used to manage this condition. There is no cure and treatment is aimed at managing the effects of the illness to improve both physical and mental function. No one approach is effective in all cases.
17. Management starts with the diagnosis and an explanation of why a patient is still ill. An explanation that CFS/ME may be progressive in some patients, but is not life threatening is an important initial step. No specific drug treatments are available. A collaborative and concordant approach to managing the condition is used where doctor and patient discuss the different options with a view to reducing symptoms and disability. The aim of management is to enable the person to improve their quality of life by returning in a gradual way to usual daily activities, education or work. It is helpful to address both the physical and mental effects of the illness, and to minimise the results of over exertion or prolonged inactivity, and revise a "boom and bust" pattern of activity. A variety of forms of management as described below may be tried, either individually or in combination. All involve establishing a sustainable baseline of activity as the first step.
Graded exercise therapy and graded activity therapy
18. Supervised and gradually increasing physical and cognitive activity will enable the majority of people to improve, and some to return to a normal level of functioning. This is likely to be undertaken with the help of an appropriately trained physiotherapist (using graded exercise therapy) or an occupational therapist (using life style management) often within a hospital or clinic setting. Caution is required since over-activity, or increasing at too fast a rate, may lead to relapses. Unsupervised or inappropriately supervised therapy can sometimes also cause relapses. Research suggests that this approach is helpful in the majority of adult ambulant patients.
Cognitive behavioural therapy
19. Cognitive behaviour therapy (CBT) is used in CFS/ME to help people to examine their interpretation of symptoms such as fatigue or muscle pain, which they may perceive as damaging to their bodies, and as a result avoid activities that appear to precipitate them. People are encouraged to view such symptoms as reversible physical and psychological processes rather than evidence of a fixed or progressive disease process, by trying out a mutually agreed programme of graded activities, which help to challenge these beliefs. Understanding the illness, addressing fears and where appropriate reinterpreting the disabling symptoms allows the person to make a gradual improvement in their level of functioning and well being. Sleep is improved and mutually agreed graded increases in activity become possible over some weeks or months. Research suggests that this approach is helpful in the majority of adult and adolescent outpatients.
Pacing
20. Pacing is a lifestyle management approach in which the person with CFS/ME is encouraged to live within the limits of their illness and energy levels carefully balancing their activity and rest, as well as balancing different activities. When possible, activity is increased gradually, but readjusted in the event of symptom exacerbation. Patient group feedback is favourable and a research study is underway to look a the efficiency of the treatment.
Medication
21. Antidepressants may be very helpful in treatment of co-morbid conditions such as depression or insomnia. They can elevate mood or relieve anxiety in standard doses (eg. sertraline, citalopram) or improve sleep and relieve pain in low doses (e.g. amitriptyline, trimipramine). However, antidepressants can have side effects when used at the standard dose required to treat depression; and these sides effects may need to be taken into account. Simple analgesics and non steroidal anti-inflammatory drugs are also used to alleviate persistent pain.
Course of illness and prognosis
22. People with mild illness may recover spontaneously, or with some general advice or a limited treatment programme over the course of the following six months. These people are likely to be treated in a general practice setting.
23. People with established CFS/ME of moderate severity lasting one to two years or more are likely to need a more extensive management programme, as described above, lasting 6 to 12 months or more. Most people who are able to attend hospital for treatment are likely to make a significant improvement with appropriate management.. Some people will recover fully, but others will not achieve their previous level of functioning. Some may not improve. Those who recover may be at risk of recurrence. Those who improve are at risk of relapse. In many patients, disability and quality of life can be improved, sometimes to a significant extent..
24. Severe cases are less likely to recover completely or benefit substantially from a management programme.
25. Indicators of a good prognosis
_ Male sex
_ A definite history of an acute viral illness like glandular fever at the onset
_ Mild disability and few symptoms
_ Clinical features showing a pattern of evolution towards functional recovery
_ Early diagnosis aimed at eliminating associated physical disorders and/or identifying psychiatric illness, along with other complicating psychological or social factors
_ A management approach which may encompass physical, psychological and social elements that allows a stepwise approach to functional improvement, using rehabilitation
26. Indicators of a poor prognosis
_ Onset of symptoms without any clear precipitating factor
_ Clinical features characterised by severe and unremitting symptoms
_ Severe and persistent disability
_ A management approach that overemphasises the importance of either complete rest or which advocates a rapid return to pre-illness levels of physical activity.
_ Those with comorbid significant medical conditions or mood disorders
_ A complex background of adverse psychological and social factors
Functional restrictions
27. The disabling effects of CFS/ME in individuals is variable (see para 9). The following describes the typical problems a with daily living activities for the majority of the time.
28. Mild condition
The person would normally to be able to wash, dress, bathe, use the toilet, get up and downstairs without difficulty. The ability to plan a meal is not impaired and the tasks involving in preparing and cooking food are unlikely to be restricted in any way. The ability to walk long distances may be reduced, but the person is likely to be able to walk short distances on an unrestricted basis most of the time. Their judgment, thought processes and means of communicating are not affected to the extent that they would be unable to find their way around in familiar and unfamiliar places.
29. Moderate condition
Those with a moderate level of disability would be expected to be able to manage some personal care and preparation of food without help from another most of the time. Tasks may take longer than normal and may need to be followed by a period of rest. Although the level of fatigue and symptom severity may vary during the day or from day to day, the ability to maintain personal hygiene and nutrition is likely to be unimpaired. The ability to walk more than 100 metres consistently may be restricted in moderate cases, but severe restriction of walking is unlikely.
30. Severe condition
People with a severe level of disability, who spend most of the day in bed or otherwise immobile, and who may have clinically evident muscle wasting, may well need help with personal care and preparing food. Such claimants may be severely restricted in their ability to walk. There may a requirement for supervision either at home or out of doors as a result of significant cognitive impairment, but it would be uncommon.
ENDS
Wednesday, July 04, 2007
Fibromyalgia Overview, Signs, Symptoms & Treatment
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. Fibromyalgia is more common in women than in men. Previously, fibromyalgia was known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias.
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day...
Widespread pain.
Fatigue and sleep disturbances.
People with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep. Some studies suggest that this sleep problem is the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. So people with fibromyalgia miss the deep restorative stage of sleep. Nighttime muscle spasms in your legs and restless legs syndrome also may be associated with fibromyalgia.
Irritable bowel syndrome (IBS).
The constipation, diarrhea, abdominal pain and bloating associated with IBS are common in people with fibromyalgia.
Headaches and facial pain. Many people who have fibromyalgia also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders.
Depression
Numbness or tingling sensations in the hands and feet (paresthesia)
Difficulty concentrating
Mood changes
Chest pain
Dry eyes, skin and mouth
Painful menstrual periods
Dizziness
Anxiety ..
See your doctor if you experience general aching or widespread pain that lasts several months and is accompanied by fatigue. Many of the symptoms of fibromyalgia mimic those of other diseases, such as low thyroid hormone production (hypothyroidism), polymyalgia rheumatica, neuropathies, lupus, multiple sclerosis and rheumatoid arthritis. Your doctor can help determine if one of these other conditions may be causing your symptoms.
Treatment
In general, treatment for fibromyalgia includes both medication and self-care. The emphasis is on minimizing symptoms and improving general health.
Self-care
Self-care is critical in the management of fibromyalgia.
Reduce stress.
Get enough sleep.
Exercise regularly.
Pace yourself.
Maintain a healthy lifestyle.
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day...
Widespread pain.
Fatigue and sleep disturbances.
People with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep. Some studies suggest that this sleep problem is the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness. So people with fibromyalgia miss the deep restorative stage of sleep. Nighttime muscle spasms in your legs and restless legs syndrome also may be associated with fibromyalgia.
Irritable bowel syndrome (IBS).
The constipation, diarrhea, abdominal pain and bloating associated with IBS are common in people with fibromyalgia.
Headaches and facial pain. Many people who have fibromyalgia also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders.
Depression
Numbness or tingling sensations in the hands and feet (paresthesia)
Difficulty concentrating
Mood changes
Chest pain
Dry eyes, skin and mouth
Painful menstrual periods
Dizziness
Anxiety ..
See your doctor if you experience general aching or widespread pain that lasts several months and is accompanied by fatigue. Many of the symptoms of fibromyalgia mimic those of other diseases, such as low thyroid hormone production (hypothyroidism), polymyalgia rheumatica, neuropathies, lupus, multiple sclerosis and rheumatoid arthritis. Your doctor can help determine if one of these other conditions may be causing your symptoms.
Treatment
In general, treatment for fibromyalgia includes both medication and self-care. The emphasis is on minimizing symptoms and improving general health.
Self-care
Self-care is critical in the management of fibromyalgia.
Reduce stress.
Get enough sleep.
Exercise regularly.
Pace yourself.
Maintain a healthy lifestyle.
Does exercisehave negative effect on CFS sufferers?
Researchers document debilitating effect of exercise in CFS
After exercise at maximum exertion, CFS patients were slower on all measures of cognitive reaction time and scored lower on cardiopulmonary capacity measures than sedentary control subjects.
Research carried out to "compare the metabolic responses and neurocognitive consequences of a maximal exercise challenge between CFS and control subjects."
Concludes "These results indicate that exercise performance and neurocognitive abnormalities exist in CFS. The lack of any significant differences in lactate, glucose or nasal rhinometry precludes clear explanation for these differences."
After exercise at maximum exertion, CFS patients were slower on all measures of cognitive reaction time and scored lower on cardiopulmonary capacity measures than sedentary control subjects.
Research carried out to "compare the metabolic responses and neurocognitive consequences of a maximal exercise challenge between CFS and control subjects."
Concludes "These results indicate that exercise performance and neurocognitive abnormalities exist in CFS. The lack of any significant differences in lactate, glucose or nasal rhinometry precludes clear explanation for these differences."
Friday, June 29, 2007
Types of Lactose Intolerance
eMedicine - Lactose Intolerance : Article by Praveen K Roy, MD
"Lactase deficiency may be classified as primary, secondary, congenital, and developmental. The classification is important as it relates to diagnosis, prognosis, and treatment...
Lactose intolerance occurs in about 25% of people in Europe; 50-80% of people of Hispanic origin, people from south India, black people, and Ashkenazi Jews; and almost 100% of people in Asia and American Indians.1 Lactose is a disaccharide sugar that is found exclusively in mammalian milk and is digested by the enzyme lactase in the mucosal brush border of the intestine. Reduced intestinal lactase results in malabsorption of lactose. The unabsorbed lactose is metabolised by colonic bacteria to produce gas and short chain fatty acids, causing the clinical syndrome of abdominal cramps, bloating, diarrhoea, and flatulence."
As iI apparently have suffered with dairy intolerance since being born I guess I must have Congenital lactose intolerance
Causes:
Congenital lactose intolerance is inherited as an autosomal recessive trait and is very rare.
Primary lactose intolerance is due to low levels of lactase, which develop after childhood
.
Secondary, or acquired, lactase deficiency may develop in a person with a healthy small intestine during episodes of acute illness. This occurs because of mucosal damage or from medications. Some causes of secondary lactase deficiency are as follows:
Acute gastroenteritis
Giardiasis
Ascariasis
Crohn disease
Celiac sprue
Tropical sprue
Radiation enteritis
Diabetic gastropathy
Carcinoid syndrome
Whipple syndrome
HIV enteropathy
Kwashiorkor
Chemotherapy
Gastrinoma
"Lactase deficiency may be classified as primary, secondary, congenital, and developmental. The classification is important as it relates to diagnosis, prognosis, and treatment...
Lactose intolerance occurs in about 25% of people in Europe; 50-80% of people of Hispanic origin, people from south India, black people, and Ashkenazi Jews; and almost 100% of people in Asia and American Indians.1 Lactose is a disaccharide sugar that is found exclusively in mammalian milk and is digested by the enzyme lactase in the mucosal brush border of the intestine. Reduced intestinal lactase results in malabsorption of lactose. The unabsorbed lactose is metabolised by colonic bacteria to produce gas and short chain fatty acids, causing the clinical syndrome of abdominal cramps, bloating, diarrhoea, and flatulence."
As iI apparently have suffered with dairy intolerance since being born I guess I must have Congenital lactose intolerance
Causes:
Congenital lactose intolerance is inherited as an autosomal recessive trait and is very rare.
Primary lactose intolerance is due to low levels of lactase, which develop after childhood
.
Secondary, or acquired, lactase deficiency may develop in a person with a healthy small intestine during episodes of acute illness. This occurs because of mucosal damage or from medications. Some causes of secondary lactase deficiency are as follows:
Acute gastroenteritis
Giardiasis
Ascariasis
Crohn disease
Celiac sprue
Tropical sprue
Radiation enteritis
Diabetic gastropathy
Carcinoid syndrome
Whipple syndrome
HIV enteropathy
Kwashiorkor
Chemotherapy
Gastrinoma
Thursday, May 31, 2007
Fibromyalgia myths dispelled...
Fibromyalgia Myth Busting
One to show your GP if they bellieve any of the following about fibro....click link for full article...
by Karen Lee Richards
ImmuneSupport.com
For many years Fibromyalgia has been considered something of a mystery, confounding the doctors who are trying to treat it and the patients who have to live with it. Only recently has new technology begun to unravel the truths about this mysterious disorder. As a result of the previous lack of scientific evidence, several myths about Fibromyalgia have developed that, unfortunately, are still being repeated today. It’s time to dispel the myths and clarify the facts.
Myth 1: Fibromyalgia is a form of arthritis.
Fact: Fibromyalgia is a neurologic disease.
the FM research front, new brain-imaging techniques and scientific studies are revealing that Fibromyalgia is better defined as a central nervous system disorder that results in abnormal pain processing.
Myth 2: Fibromyalgia affects the muscles, joints and connective tissue.
Fact: There is no damage to the muscles, joints or connective tissue of people with Fibromyalgia.
Myth 3: Fibromyalgia is an autoimmune disease.
Fact: Fibromyalgia is NOT an autoimmune disease.
Myth 4: Fibromyalgia is a middle-aged woman’s disease.
Fact: Fibromyalgia affects men, women and children.
Myth 5: Fibromyalgia is a psychological problem.
Fact: Fibromyalgia is a physical disorder with real, measurable biological abnormalities
One to show your GP if they bellieve any of the following about fibro....click link for full article...
by Karen Lee Richards
ImmuneSupport.com
For many years Fibromyalgia has been considered something of a mystery, confounding the doctors who are trying to treat it and the patients who have to live with it. Only recently has new technology begun to unravel the truths about this mysterious disorder. As a result of the previous lack of scientific evidence, several myths about Fibromyalgia have developed that, unfortunately, are still being repeated today. It’s time to dispel the myths and clarify the facts.
Myth 1: Fibromyalgia is a form of arthritis.
Fact: Fibromyalgia is a neurologic disease.
the FM research front, new brain-imaging techniques and scientific studies are revealing that Fibromyalgia is better defined as a central nervous system disorder that results in abnormal pain processing.
Myth 2: Fibromyalgia affects the muscles, joints and connective tissue.
Fact: There is no damage to the muscles, joints or connective tissue of people with Fibromyalgia.
Myth 3: Fibromyalgia is an autoimmune disease.
Fact: Fibromyalgia is NOT an autoimmune disease.
Myth 4: Fibromyalgia is a middle-aged woman’s disease.
Fact: Fibromyalgia affects men, women and children.
Myth 5: Fibromyalgia is a psychological problem.
Fact: Fibromyalgia is a physical disorder with real, measurable biological abnormalities
Thursday, April 12, 2007
Chronic Fatigue Syndrome recorded as a cause of death
drjohngreensmith@mefreeforall.org
Letters to the editor - Sydney Morning Herald.
The "indisputable evidence of inflammation and cell death" observed under the
microscope, in the case of Sophia Mirza, reported to be the first person in
Britain to have had Chronic Fatigue Syndrome officially recorded as a cause of
death (Victims give clues to the answers, Sydney Morning Herald, 12 April
2007), restores Myalgic Encephalomyelitis to its rightful diagnostic place.
There never was a good reason for CFS to displace M.E. Whatever M.E. is, it
certainly isn't fatigue.
Nor was there ever a good reason for M.E to be considered the province of
psychiatrists. There is no evidence of greater incidence of psychiatric
history amongst M.E. sufferers than in the general population and, while
people with M.E. may have understandable concomitant psychological problems,
the one is not a prerequisite for the other.
M.E. sufferers and researchers have been clamouring for decades that CFS has
been holding back research and that, if you don't look for, you're not going
to find the neurological evidence, it was Myalgic Encephalomyelitis all along.
Then we can get down to the business of seeking treatments towards a cure.
You don't have to be much of a specialist of any sort to reckon that it would
be better for all concerned to spend money on neurological testing while M.E.
sufferers are still alive.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
Article
The development of an autopsy protocol may help unlock some of the mysteries of chronic fatigue syndrome, writes Julie Robotham.
UNDER the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death...
Letters to the editor - Sydney Morning Herald.
The "indisputable evidence of inflammation and cell death" observed under the
microscope, in the case of Sophia Mirza, reported to be the first person in
Britain to have had Chronic Fatigue Syndrome officially recorded as a cause of
death (Victims give clues to the answers, Sydney Morning Herald, 12 April
2007), restores Myalgic Encephalomyelitis to its rightful diagnostic place.
There never was a good reason for CFS to displace M.E. Whatever M.E. is, it
certainly isn't fatigue.
Nor was there ever a good reason for M.E to be considered the province of
psychiatrists. There is no evidence of greater incidence of psychiatric
history amongst M.E. sufferers than in the general population and, while
people with M.E. may have understandable concomitant psychological problems,
the one is not a prerequisite for the other.
M.E. sufferers and researchers have been clamouring for decades that CFS has
been holding back research and that, if you don't look for, you're not going
to find the neurological evidence, it was Myalgic Encephalomyelitis all along.
Then we can get down to the business of seeking treatments towards a cure.
You don't have to be much of a specialist of any sort to reckon that it would
be better for all concerned to spend money on neurological testing while M.E.
sufferers are still alive.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
Article
The development of an autopsy protocol may help unlock some of the mysteries of chronic fatigue syndrome, writes Julie Robotham.
UNDER the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death...
Fibromyalgia, frozen shoulder and osteopathic treatment
A regional CFS/FMS/MCS group notes that they have seen a couple of incidents of frozen shoulder syndrome in Fibromyalgia patients and recommend this non-invasive, non-surgical osteopathic treatment as developed by English osteopath, Dr. Simeon Niel-Asher
Link frozen shoulder syndrome in Fibromyalgia
Link frozen shoulder syndrome in Fibromyalgia
Fibromyalgia sufferers should all link to this video
Link Living with Fibromyalgia on You Tube
Few videos mark the stark and devastating nature of Fibromyalgia as this
personal account of living with fibromyalgia that has just been posted on you tube.
Please do watch, comment and link to this to help raise awareness of FM and the effects on all aspects of life if you can.
This young woman's daily struggle vividly illustrates the awful isolation and lack of understanding that still surrounds Fibromyalgia, ME/CFS.
Her story is incredibly moving and courageous - I just wish I could put words together as eloquently as she does- words often seem to evaporate and I am left tongue tied, a major frustration for me.
Link Living with Fibromyalgia on You Tube
Few videos mark the stark and devastating nature of Fibromyalgia as this
personal account of living with fibromyalgia that has just been posted on you tube.
Please do watch, comment and link to this to help raise awareness of FM and the effects on all aspects of life if you can.
This young woman's daily struggle vividly illustrates the awful isolation and lack of understanding that still surrounds Fibromyalgia, ME/CFS.
Her story is incredibly moving and courageous - I just wish I could put words together as eloquently as she does- words often seem to evaporate and I am left tongue tied, a major frustration for me.
Link Living with Fibromyalgia on You Tube
Wednesday, March 07, 2007
The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment
Great article for clarifying how Fibro disrupts in often unpredictable ways..
The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment: "I usually state that Fibromyalgia is a condition that may unpredictably flare up from time to time, resulting in impairment of work ability, and may require a time off work on a temporary basis. I describe the health services needed, such as medications, therapies, or injections, and explain the justifications for a leave from work....
Examples of work restrictions specific to a patient with FM include:
Not working more than eight hours a day five days a week. Specifically, no overtime or weekends.
Working part-time hours, working day hours only, or working flexible hours.
Avoiding temperature changes (no exposure to cold or damp weather).
No direct air-conditioning drafts.
No repetitive reaching or overhead use of the arms.
No repetitive bending or leaning forward.
No sitting, standing, or walking for a long period to time without altering positions."
i seem to be having a minor flare up at the moment, feel fluey and hot, achy , v tired with mush for brains... I am half hoping that it is because a period is on its way...sore boobs would suggest that...rather than my new work under permitted hours ruling. The latter would be a reall knock back...
The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment: "I usually state that Fibromyalgia is a condition that may unpredictably flare up from time to time, resulting in impairment of work ability, and may require a time off work on a temporary basis. I describe the health services needed, such as medications, therapies, or injections, and explain the justifications for a leave from work....
Examples of work restrictions specific to a patient with FM include:
Not working more than eight hours a day five days a week. Specifically, no overtime or weekends.
Working part-time hours, working day hours only, or working flexible hours.
Avoiding temperature changes (no exposure to cold or damp weather).
No direct air-conditioning drafts.
No repetitive reaching or overhead use of the arms.
No repetitive bending or leaning forward.
No sitting, standing, or walking for a long period to time without altering positions."
i seem to be having a minor flare up at the moment, feel fluey and hot, achy , v tired with mush for brains... I am half hoping that it is because a period is on its way...sore boobs would suggest that...rather than my new work under permitted hours ruling. The latter would be a reall knock back...
Monday, January 15, 2007
Fibromyalgia update
Been a while ssince I posted but this article makes some excellent points. I am in the middle of a flare right now with almost daily migraines and high levels of ibs symptoms and just so, so tired...
PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.To: All My M.E. Chums, ME Free For All.org volunteers & Online Groups.(If anyone is troubled by duplicates or prefers not to receive e-mails of this sort, please let me know and I'll remove you from the list immediately)Following the exceptional interest in this article, I received requests from at least one member of every M.E. on line group + others for a text version.I'm grateful to Stephen Ralph who defied sleep for as long as he could last night to produce the Lion's share of this work and I tidied it up this morning.I hope it will stimulate more people to respond with whatever their opinion since, I am sure, it increases the chance of at least one or two of us getting published.
The e-mail address is letters@mailonssunday.co.uk
CheersJohndrjohngreensmith@mefreeforall.org
Health Notes On your behalf Health Editor Sarah Stacey asks the experts for answers to your health queries
Q. My daughter, 33, has been diagnosed with ME (myalgic encephalomyelitis) but the doctors seem to be treating her as if the illness isn't physical but all in her mind. She's not getting better. Is there another approach?
A. There has been a fierce argument about the nature of this debilitating condition for several decades. Some psychiatrists claim it's a psychosomatic condition where patients imagine they have an illness but increasing numbers of scientists worldwide state that it's a genuine physical (or organic) condition. The situation was reviewed in a recent parliamentary inquiry, chaired by Dr Ian Gibson MP, which backed the latter; see the full report on www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf.'
ME is a chronic inflammatory condition, involving the spinal column and nerves in the brain. It is a multi-system, multi-organ illness affecting the brain, hormones and immune system,' says Malcolm Hooper, Emeritus Professor of medicinal chemistry at the University of Sunderland. It can often be traced back a viral or bacterial infection, or even an immunisation, explains consultant physician Dr William Weir: 'Any infection switches on genes in the immune system fight back. But research suggests that in ME patients these genes aren't switched off once the offending organism is cleared, so the immune system is stuck in a state of red alert. Many patients say they feel as if they have flu all the time.' Toxic chemicals, such as organophosphate pesticides (used in head-lice shampoos), may trigger the illness, too.The reasons the psychiatric lobby have claimed the condition for their own are that patients are often depressed and tests show physical change.
Although virtually every disease has a psychological element, says the Gibson inquiry, 'it is likely the inactivity and lethargy caused by the ME combined with psychological aspects such ... social stigma, lack of classification or possibility of a cure, leave the ME sufferer ... more prone to depression.'Dr Weir explains that, `while inflammation is easy to spot in other inflammatory conditions, with ME it seems very subtle and diffuse.' The situation is complicated by the fact that chronic fatigue, one of the main symptoms, can be due to other illnesses, including underactive thyroid, as well as more serious problems, so excluding those is vital. The Gibson inquiry suggests adopting the criteria for diagnosing ME developed by Dr Bruce Carruthers's team (see the Gibson inquiry, as before, pages 15-17).
Sadly, the £11 million NHS budget has, to date, gone into centres where ME is treated as a psychiatric condition with cognitive behavioural therapy (which has helpful but transient effects in some patients), graded exercise therapy (which some experts say is positively damaging) and pacing, a method of managing energy (which is common sense).
More research is vtal but the Gibson inquiry emphasises the need for a `holistic, mind and body approach'.
Expert advice includes:
a.. Eat well with omega-3 rich oily fish and fresh vegetables and fruit Excluding red meat may help.
b.. Patients with IBS-type symptoms may benefit from pinpointing trigger foods through elimination diet. (See The Complete Guide to Food Allergy and intolerance by Professor Jonathan Brostoff and Linda Gamlin, Bloomsbury, £6.99.)
c.. Anti-inflammatories and painkillers may relieve joint and muscle aches. Drug therapies so far are 'uniformly disappointing', says the Gibson inquiry, but antiviral agents and interferons may prove helpful.
d.. Meditation aids relaxation.
e.. Acupuncture, reflexology and aromatherapy may relieve symptoms.
f.. Try gentle yoga (search Google for local classes).
g.. Follow short spurts of activity with rest.
h.. High levels of EPA (eicosapentaenoic) omega-3 fatty acids have benefited some sufferers. (See Chronic Fatigue Syndrome: a natural way treat ME by Professor Basant K Puri, Hammersmith Press, £14.99.)
Books mentioned are available from you-bookshop.co.uk; post-free, tel: 0870 162 5006LIFESUPPORTOr rather, not ...
ME is currently defined a psychosocial by the Department for Work and Pensions (DWP) and medical insurance companies - despite its World Health classification neurological disease - so patients are not entitled to the higher level of benefit payments. This is 'in the financial interest of both the DWP and the medical insurance companies' rather than the sick person, says the Gibson inquiry and these patients should be entitled to the higher rate.
E-mail Sarah at s.stacey@you.co.ukSarah reads all your e-mails but regrets that she cannot answer them all personally
Helpful websites
a.. Investinme.org - an independent charity campaigning for more biomedical research into ME, with excellent information for patients and carers.
b.. Professor Hooper's lecture, Engaging with ME, is available through
satori-5.co.uk/1_severe_me/prof_hooper_dvd.html
Thanks to our expertsProfessor Malcolm Hooper;Dr William Weir, tel: 020 7467 8478;Professor Jonathan Brostoff. tel: 020 7435 7106YOU 14 JANUARY 200763 ---------------------------------------------
PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.To: All My M.E. Chums, ME Free For All.org volunteers & Online Groups.(If anyone is troubled by duplicates or prefers not to receive e-mails of this sort, please let me know and I'll remove you from the list immediately)Following the exceptional interest in this article, I received requests from at least one member of every M.E. on line group + others for a text version.I'm grateful to Stephen Ralph who defied sleep for as long as he could last night to produce the Lion's share of this work and I tidied it up this morning.I hope it will stimulate more people to respond with whatever their opinion since, I am sure, it increases the chance of at least one or two of us getting published.
The e-mail address is letters@mailonssunday.co.uk
CheersJohndrjohngreensmith@mefreeforall.org
Health Notes On your behalf Health Editor Sarah Stacey asks the experts for answers to your health queries
Q. My daughter, 33, has been diagnosed with ME (myalgic encephalomyelitis) but the doctors seem to be treating her as if the illness isn't physical but all in her mind. She's not getting better. Is there another approach?
A. There has been a fierce argument about the nature of this debilitating condition for several decades. Some psychiatrists claim it's a psychosomatic condition where patients imagine they have an illness but increasing numbers of scientists worldwide state that it's a genuine physical (or organic) condition. The situation was reviewed in a recent parliamentary inquiry, chaired by Dr Ian Gibson MP, which backed the latter; see the full report on www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf.'
ME is a chronic inflammatory condition, involving the spinal column and nerves in the brain. It is a multi-system, multi-organ illness affecting the brain, hormones and immune system,' says Malcolm Hooper, Emeritus Professor of medicinal chemistry at the University of Sunderland. It can often be traced back a viral or bacterial infection, or even an immunisation, explains consultant physician Dr William Weir: 'Any infection switches on genes in the immune system fight back. But research suggests that in ME patients these genes aren't switched off once the offending organism is cleared, so the immune system is stuck in a state of red alert. Many patients say they feel as if they have flu all the time.' Toxic chemicals, such as organophosphate pesticides (used in head-lice shampoos), may trigger the illness, too.The reasons the psychiatric lobby have claimed the condition for their own are that patients are often depressed and tests show physical change.
Although virtually every disease has a psychological element, says the Gibson inquiry, 'it is likely the inactivity and lethargy caused by the ME combined with psychological aspects such ... social stigma, lack of classification or possibility of a cure, leave the ME sufferer ... more prone to depression.'Dr Weir explains that, `while inflammation is easy to spot in other inflammatory conditions, with ME it seems very subtle and diffuse.' The situation is complicated by the fact that chronic fatigue, one of the main symptoms, can be due to other illnesses, including underactive thyroid, as well as more serious problems, so excluding those is vital. The Gibson inquiry suggests adopting the criteria for diagnosing ME developed by Dr Bruce Carruthers's team (see the Gibson inquiry, as before, pages 15-17).
Sadly, the £11 million NHS budget has, to date, gone into centres where ME is treated as a psychiatric condition with cognitive behavioural therapy (which has helpful but transient effects in some patients), graded exercise therapy (which some experts say is positively damaging) and pacing, a method of managing energy (which is common sense).
More research is vtal but the Gibson inquiry emphasises the need for a `holistic, mind and body approach'.
Expert advice includes:
a.. Eat well with omega-3 rich oily fish and fresh vegetables and fruit Excluding red meat may help.
b.. Patients with IBS-type symptoms may benefit from pinpointing trigger foods through elimination diet. (See The Complete Guide to Food Allergy and intolerance by Professor Jonathan Brostoff and Linda Gamlin, Bloomsbury, £6.99.)
c.. Anti-inflammatories and painkillers may relieve joint and muscle aches. Drug therapies so far are 'uniformly disappointing', says the Gibson inquiry, but antiviral agents and interferons may prove helpful.
d.. Meditation aids relaxation.
e.. Acupuncture, reflexology and aromatherapy may relieve symptoms.
f.. Try gentle yoga (search Google for local classes).
g.. Follow short spurts of activity with rest.
h.. High levels of EPA (eicosapentaenoic) omega-3 fatty acids have benefited some sufferers. (See Chronic Fatigue Syndrome: a natural way treat ME by Professor Basant K Puri, Hammersmith Press, £14.99.)
Books mentioned are available from you-bookshop.co.uk; post-free, tel: 0870 162 5006LIFESUPPORTOr rather, not ...
ME is currently defined a psychosocial by the Department for Work and Pensions (DWP) and medical insurance companies - despite its World Health classification neurological disease - so patients are not entitled to the higher level of benefit payments. This is 'in the financial interest of both the DWP and the medical insurance companies' rather than the sick person, says the Gibson inquiry and these patients should be entitled to the higher rate.
E-mail Sarah at s.stacey@you.co.ukSarah reads all your e-mails but regrets that she cannot answer them all personally
Helpful websites
a.. Investinme.org - an independent charity campaigning for more biomedical research into ME, with excellent information for patients and carers.
b.. Professor Hooper's lecture, Engaging with ME, is available through
satori-5.co.uk/1_severe_me/prof_hooper_dvd.html
Thanks to our expertsProfessor Malcolm Hooper;Dr William Weir, tel: 020 7467 8478;Professor Jonathan Brostoff. tel: 020 7435 7106YOU 14 JANUARY 200763 ---------------------------------------------
Friday, October 20, 2006
Digestive enzyme for Lactose Intolerance
This stuff looks the biz! could be v v useful for when I want to eat in a restaurant etc...anything that may be not 100% non dairy......
foodreactions.org: Digestive enzyme for Lactose Intolerance: "Prolactazyme Forte Capsules
Designed specifically for the complete digestion of milk and its products. Ideal to persons suffering from LI and/or milk allergies. It helps to eliminate all symptoms associated with Lactose intolerance, such as cramps, bloating, flatulence etc. "
foodreactions.org: Digestive enzyme for Lactose Intolerance: "Prolactazyme Forte Capsules
Designed specifically for the complete digestion of milk and its products. Ideal to persons suffering from LI and/or milk allergies. It helps to eliminate all symptoms associated with Lactose intolerance, such as cramps, bloating, flatulence etc. "
Healthy Lifestyle Changes for Fibromyalgia: Diet (Excerpt from �The Complete Idiot�s Guide to Fibromyalgia� by Lynne Matallana)
Interesting to read that lactase enzymes can be bought to help with dairy intolerance which I certainly suffer from...
Healthy Lifestyle Changes for Fibromyalgia: Diet (Excerpt from �The Complete Idiot�s Guide to Fibromyalgia� by Lynne Matallana): "Lactose intolerance is the inability to digest lactose, the principal sugar of milk. This intolerance is caused by a shortage of the enzyme lactase, which is produced by the cells that line the small intestine. When there is not enough lactase to digest the amount of lactose consumed, a person may suffer from nausea, cramps, bloating, gas, and diarrhea. Individuals with lactose intolerance need to limit their intake of milk and dairy products or take lactase enzymes that are available without a prescription. "
Will research to see what if such lactase enzymes are available in the UK......
Healthy Lifestyle Changes for Fibromyalgia: Diet (Excerpt from �The Complete Idiot�s Guide to Fibromyalgia� by Lynne Matallana): "Lactose intolerance is the inability to digest lactose, the principal sugar of milk. This intolerance is caused by a shortage of the enzyme lactase, which is produced by the cells that line the small intestine. When there is not enough lactase to digest the amount of lactose consumed, a person may suffer from nausea, cramps, bloating, gas, and diarrhea. Individuals with lactose intolerance need to limit their intake of milk and dairy products or take lactase enzymes that are available without a prescription. "
Will research to see what if such lactase enzymes are available in the UK......
Tuesday, October 10, 2006
Robitussin - Dextromethorphan for Fibromyalgia
Wyeth UK - Robitussin: Robitussin Dry Cough Medicine - nb only this one type contains the "Active ingredient:Dextromethorphan hydrobromide."
Erowid DXM Vault : Complete Guide to DXM in Non-Prescription Drugs: " list of more than 80 non-prescription medications containing various forms of DXM. Listed are the active ingredients (as of 2001) and any relevant notes or cautions"
The highest pure dosage is "DexAlone
by DexAlone
Active Ingredients (per gelcap):
DXM Hydrobromide (30mg)
Notes: Manufactured by DexGen"
DexGen Pharmaceuticals, Inc. Interesting site esp as it mentions P Holfords bug bear - homocysteine....
"
Erowid DXM Vault : Complete Guide to DXM in Non-Prescription Drugs: " list of more than 80 non-prescription medications containing various forms of DXM. Listed are the active ingredients (as of 2001) and any relevant notes or cautions"
The highest pure dosage is "DexAlone
by DexAlone
Active Ingredients (per gelcap):
DXM Hydrobromide (30mg)
Notes: Manufactured by DexGen"
DexGen Pharmaceuticals, Inc. Interesting site esp as it mentions P Holfords bug bear - homocysteine....
"
Old Remedy/New Help for Fibromyalgia
The cough medicine rumour revived......ABC30.com: Health Watch - Old Remedy/New Help for Fibromyalgia: "Fibromyalgia affects one in nine people and leaves its victims in constant pain. It's difficult to diagnose, and there is no cure. But there is hope. An ingredient found in a common over-the-counter drug may ease patients' pain.....A new twist on an old drug may help. Dextromethorphan is an ingredient commonly found in cough syrup, but doctors found it also targets nerve cells.
Dr. Staud says, "The activity of these nerve cells is significantly decreased, resulting in less amplification of pain."
He says, however, the levels found in cough syrup are not strong enough....
"about four to five-times stronger than what you can buy over-the-counter.......
At high doses, dextromethorphan causes problems related to memory and confusion. The drug is still being studied and isn't available to the public yet."
so now to find out which brands of cough medicine contain the active ingreditnt.....
Dr. Staud says, "The activity of these nerve cells is significantly decreased, resulting in less amplification of pain."
He says, however, the levels found in cough syrup are not strong enough....
"about four to five-times stronger than what you can buy over-the-counter.......
At high doses, dextromethorphan causes problems related to memory and confusion. The drug is still being studied and isn't available to the public yet."
so now to find out which brands of cough medicine contain the active ingreditnt.....
Sunday, October 01, 2006
IBS and Chronic Fatigue
CO-CURE Archives -- September 2006, week 5 (#17)
Very interesting especially as irritable bowel is one of my most longstanding problems - improved by dairy free diet and after a course of mega antibiotics (metronidazole I think) plus another stomach ulcer drug whose name eludes me ...to treat my gut which was inflamed mouth to bottom.....
"The relationship established between irritable
bowel and the serum IgA to enterobacteria suggests that
irritable bowel in CFS reflects in part disorders in gut-intestinal
permeability rather than psychological stress as most
psychiatrists tend to confirm.
Interestingly, the intestinal barrier may be compromised by
factors which are known to trigger CFS, e.g. psychological
stress (Meddings and Swain, 2000); sustained strenuous
exercise (Davis et al., 2005); food allergies (Andre et al., 1987),
surgery and trauma (Pape et al., 1994), but also inflammation.....
...The results show that enterobacteria are involved in the etiology of CFS
and that an increased gutintestinal permeability has caused an immune
response to the LPS of gram-negative enterobacteria. It is suggested that
all patients with CFS should be checked by means of the IgA panel used in
the present study and accordingly should be treated for increased gut
permeability.
Keywords: Chronic fatigue syndrome; Inflammation; Immunity; Autoimmune;
IgA; Enterobacteria; Gut permeability; Oxidative stress; Leaky gut"
Very interesting especially as irritable bowel is one of my most longstanding problems - improved by dairy free diet and after a course of mega antibiotics (metronidazole I think) plus another stomach ulcer drug whose name eludes me ...to treat my gut which was inflamed mouth to bottom.....
"The relationship established between irritable
bowel and the serum IgA to enterobacteria suggests that
irritable bowel in CFS reflects in part disorders in gut-intestinal
permeability rather than psychological stress as most
psychiatrists tend to confirm.
Interestingly, the intestinal barrier may be compromised by
factors which are known to trigger CFS, e.g. psychological
stress (Meddings and Swain, 2000); sustained strenuous
exercise (Davis et al., 2005); food allergies (Andre et al., 1987),
surgery and trauma (Pape et al., 1994), but also inflammation.....
...The results show that enterobacteria are involved in the etiology of CFS
and that an increased gutintestinal permeability has caused an immune
response to the LPS of gram-negative enterobacteria. It is suggested that
all patients with CFS should be checked by means of the IgA panel used in
the present study and accordingly should be treated for increased gut
permeability.
Keywords: Chronic fatigue syndrome; Inflammation; Immunity; Autoimmune;
IgA; Enterobacteria; Gut permeability; Oxidative stress; Leaky gut"
Thursday, July 20, 2006
Evidence to the Gibson Inquiry
Essential reading for anyone living with any form of CFS, ME etc including carers, relatives and especially Doctors...
Evidence to the Gibson Inquiry: "The ME Association has set up this blog so that people can read evidence given to the Gibson Inquiry on the state of ME research in the UK. We shall be adding to it as more evidence is made available. Members of the Inquiry have announced that they plan to complete their Report by the end of October 2006."
Evidence to the Gibson Inquiry: "The ME Association has set up this blog so that people can read evidence given to the Gibson Inquiry on the state of ME research in the UK. We shall be adding to it as more evidence is made available. Members of the Inquiry have announced that they plan to complete their Report by the end of October 2006."
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