Tuesday, December 30, 2008

Northallerton and District ME Support Group

ME Research UK — Group friends: "Northallerton and District ME Support Group
The group was re-launched in September 2006. It is now run by local people with ME. We welcome anyone living in Northallerton itself or any of the nearby towns and villages who have an interest in ME — sufferers, their families and carers. We are a small, friendly/informal group. We meet to provide mutual support and exchange information whilst enjoying a chat and refreshments.
Meetings: The group meets on a monthly basis (usually the first Monday of the month — except bank holidays when an alternative date will be chosen) in a central Northallerton location. Meetings take place from 1.30 to 3.30 pm. The meeting room has full disabled access with parking and transport links nearby. If you would like to come along to a meeting or find out more about the group, please contact Gillian Dodsworth (Chairperson), weekdays between 1 and 6.30 pm.
Tel: 01609 779452."

CFS and medical textbooks, Doctor education, patients testify

Oh, please, yes, please! I am sick and tired of being treat like a moron by the medical profession or as if my condition is all my own fault...lets get them educated!

Just one extract from what seems a very important conference. CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE

http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf

"Dr. Jason's Presentation

Dr. Jason said that he also planned to give his presentation at the Reno
IACFS/ME conference.

He noted that there are about 200 publications each year on CFS, according
to Freidberg and Associates. It is unclear how CFS is represented in the
published literature, particularly with medical textbooks. Medical textbooks
are important because they are:


. A cornerstone in the training of medical staff and students.
. A main source of references and reviews for medical professionals.
. A source of information on coding and treating a variety of illnesses.


The objective of Dr. Jason's study was to evaluate the coverage of CFS in
medical textbooks to determine the extent and comprehensiveness of CFS
information.

Textbooks were gathered from a number of sources including university
medical school libraries and medical school book stores. The study looked at
129 textbooks in different specialty areas. The areas of interest in the
study were the number of pages and percent of space allotted to CFS. Dr.
Jason discussed pages in his presentation. The comprehensiveness and extent
of representation of CFS information was included, and CFS was compared with
to other illnesses.


Page representation:

. Looked at a total of 140,552 pages in 129 textbooks. Always took the most
recent version of a textbook, primarily within the last seven or eight
years.
. CFS was represented on 125 pages, or .089 percent of the potential pages
examined.
. Holistic, psychiatry, and internal medicine texts had the highest
percentage of mention of CFS; endocrinology, obstetrics, and emergency
medicine the least.


If CFS was mentioned, the study also examined information concerning:
. The illness ideology.
. The probability of Axis 1 disorder.
. Treatment options.
. Prevalence rate.
. Inclusion of ME terminology.

Results:
. 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
The problem, of course, was that there was very little mention.
. 42 textbooks (32 percent) had something about etiology. Sometimes it was
biogenic, sometimes psychogenic, sometimes both.
. 17 textbooks (13 percent) mentioned the high probability of Axis 1
Disorder [a major psychiatric problem].
. 25 textbooks (19 percent) mentioned some criteria.
. 37 textbooks (28.7 percent) indicated some treatment associated with CFS.
The most common were cognitive behavior therapy, anti-depressants, graded
exercise or exercise, and supplements.
. Only 18 textbooks (14 percent) had any mention of prevalence rates.
. Only 19 books (14.8 percent) had any mention of ME terminology.


Summarizing this part of the study: Critical domains within CFS are not well
represented in medical textbooks, either in terms of etiology, criterion, or
treatment options.


Illness Comparison

Next the study analyzed a random sample of 45 books from the 129 to compare
CFS with illnesses that are much more prevalent-cancer and diabetes-and with
illnesses that are less prevalent-MS [multiple sclerosis] and Lyme disease.
Even the illnesses that are less prevalent than CFS have greater coverage in
medical textbooks. CFS appeared in 24 percent of the 41,922 pages while Lyme
disease appeared in 61.8 percent and MS, 53 percent.

Major findings:
. CFS is underrepresented in medical textbooks.
. CFS is also given fewer pages than diseases that are less prevalent.


Why does this matter?
. 77 percent of CFS patients reported they had experienced a negative
interaction with a healthcare provider.
. 66 percent believe that their condition had been made worse after seeking
care from their doctors.
. Family physicians feel the continuing education and training they received
leave them unable to diagnose and manage CFS.
. 48 percent of general practitioners did not feel confident that they could
diagnose CFS.


Conclusions

. Healthcare professionals need to be adequately trained and provided with
up-to-date, non-biased information in their textbooks.
. Medical textbooks may be a critical component in raising CFS awareness and
there is a clear need for this illness to receive more representation.

Additional points of interest:
Migraines plus CFS suggests:
• Autonomic abnormalities
•Neurogenic inflammation
very likely contribute to the high level of overlap between migraines and CFS.
From a treatment perspective, if you identify migraines in 88 percent of your CFS people, you should get them started on appropriate therapy.
From this we wanted to look more at the autonomic nervous system.

Hypothesis: Central nervous system dysfunction is a critical component of CFS and related syndromes such as FM, Persian Gulf War Illness, multiple chemical sensitivity, irritable bowel and bladder syndromes, and other allied conditions. Analysis of the fluid flowing from the brain will identify factors that may indicate the pathology of CFS to direct the creation of new treatments, and serve as diagnostic biomarkers for future testing.

Researchers obtained cerebrospinal fluid from Gulf War Illness (GWI) subjects (most also had CFS), FM subjects (many had CFS), and control subjects for a total of 62 subjects. Researchers compared pooled samples from GWI, pooled samples from CFS, and pooled samples from controls. The identified the proteins that were only present in the GWI and CFS people. They also took individual specimens from the CFS and GWI people and compared them to individual specimens from control subjects.

Dr. Baraniuk: It was mind boggling because we ended up with about 10 proteins that were present only in our CFS group and not present in the control group. The odds of this are about 10 to the minus 15. We’re currently doing the proteomic analysis using a high-end orbitrap mass spectrometer to see if we get the same pattern. The key proteins from the CFS-related proteome, I think, give us some potential clues as to what’s going on


Toni M., Maryland
Thank you, Chairman Oleske and members of the Chronic Fatigue Syndrome Advisory Committee, for this opportunity to address issues of help and accommodation for those living with CFS.
My story is one of resistance and denial of disabling conditions. Looking back, I had something wrong since early childhood. My body became so overwhelmed over time, I ended up in a bad state of chronic fatigue syndrome.....
As the nature of CFS becomes better understood by more professionals, more CFS patients may appreciate their physical and cognitive deficits—“may” is the operative word here. Don’t count on it. Education helps, knowledge helps, but you have to be ready to hear it. But taking limitations seriously can help you ask for help a little faster than I did. Help is hard as CFS people hold onto the idea of recovery any minute, as I did. When you can dress yourself and toilet yourself and do dishes occasionally and go out to dinner and go shopping—although not sit at a job without feeling horribly sick—when you have that going on in your life, the idea of recovery any minute is ever present…the idea that life will go back to what is normal for them—for me—before CFS was present.
Programs are severely needed that help CFS people and understand that their wishes for recovery and their up and down days are normal. We live and cope with CFS with difficulty, often struggling with symptoms for years or decades without diagnosis, as I did, without even physician support, as members of this committee know. Programs helping CFS patients cope with the nature of their conditions has the potential—the potential; don’t count on it—to short circuit patients’ denial and resistance, hastening acceptance, with which the best of us need help; helping us move toward healing.

Lars Ellen M., Arizona
I am 51 living in Tucson with my husband. I have CFS, OI, FM, allergies, Hashimoto’s disease, pernicious anemia, fluctuating thyroid, ADHD for which I cannot use drugs because of memory loss side effects, sleep apnea, restless leg syndrome, and postural limb movement syndrome causing jerking and kicking the nonsense out of bedpost and darling husband.
Disability retirement from work was a result of a series of events culminating in five back surgeries beginning in 1999. I use two canes to walk short distances and I drive a little. Antibiotics are needed for the foreseeable future due to chronic MRSA [methicillin resistant Staphylococcus aureus] infection causing chronic digestive problems.

CFS patients need programs designed to help patients more easily find resources, tools, and alternatives to maneuver past the obstacles of disability, enabling patients to feel more part of life and the lives around them. It is as confusing for patients as for their families that some days we seem almost normal only to relapse into a heap the next day. This is serious stuff, and patients and their families benefit by knowing what to expect while we wait for research to help some more.
CFS means not knowing what to expect on a given day. Some days, things get done; some days, I may be so stove up that showering, bathing, changing clothes is out of the question. Dressing, especially to be out and about, is nothing like my former life. I have no more strength for pulling on pantyhose or stumbling in high heels. I dress in easy access clothing and comfortable shoes. But there are days I crawl out of bed, rubber band my uncombed hair, and spend the entire day in pajamas.
Neurological symptoms cause brain fog and trouble holding onto instructions, directions, words, and names, including those of my two grown sons, like a game of charades or password. Shopping for a mattress, I gestured wildly with slurred speech, exclaiming, “I need bird…feather…not up…for top.” The word I sought was “down” for a mattress pad stuffed with down feathers. B12 shots help, but after a shot a few days ago, writing this has taken several days—before editing.
My best friend and husband, Glenn, and I have set up our home for my ease of movement—more accessible kitchen and laundry, floors that won’t trip me up and are softer to walk on. I need an indoor temperature of 66 degrees to deal with chronic temperature dysregulation. I wear long sleeves to hide bruises from stumbles and to keep me comfortable in my cooler than normal house.
People like me feel overwhelmed by things we must do much less fun things like travel. We feel almost forbidden to have fun once we no longer work. I have given this a lot of thought. ...

Friday, December 26, 2008

Fibro at Xmas

. . . is a total pain!

Tired, in pain and trying to think through the fog topped off by a chronic coucgh and the return of tendonitus in my shoulder. . .

Monday, December 22, 2008

graded exercise therapy not the answer

December 2008: ME Free For All: "Re: ME controversy hampers research, Independent, 19 December 2008
Sir Peter Spencer, Chief Executive of Action for ME, writes, 'to print that 'the best treatment [for ME] is graded exercise therapy' is wholly misleading.' (ME is a devastating illness, but don't lose all hope, Independent, 15 December 2008). He is quite right and Action for ME's most recent survey, showing that GET makes a majority worse, is supported by other research in Japan and the USA.

Yet, incredibly, Sir Peter's own organisation is calling for more funding to increase the provison of the very treatment, we have all agreed, has been shown to make most M.E. sufferers worse after it, some irrecoverably so, leaving them housebound or in a wheelchair. Even more astonishingly, they are getting it.

In the meantime, promising biomedical research, including the genetic work referred to by Dr Anne Faulkner in her letter (ME controversy hampers research, Independent, 19 December 2008), is being starved of public money and is having to rely on charity or go undone.

The advice of this organisation and many other M.E. charities is, unequivocally, to choose the option, contained in the NICE (National Institute for Health and Clinical Excellence) guidelines, of declining treatment in one of the regional clinics unless or until they have reliable evidence to support them offering it.

Yours sincerely
Dr John H Greensmith
ME Free For All. org"

Monday, December 15, 2008

cfs/meKnowledgeCenter - Information and Guidance for those affected by CFS/ME

cfs/meKnowledgeCenter - Information and Guidance for those affected by CFS/ME has the makings of a great site..

Debating with myself whether it is worth going back to my GP again in the maybe forlorn hope of getting her to understand how disabling my fibromyalgia is. Last visit (for RTI) I mentioned new hot sweats, quite different to the previous which probably were menopause related, but no, she insisted they were probably still menopausal. Strange then that they stopped shortly into the course of anti-biotics. Still got horrendous post nasal drip and feel like a fever / headache is creeping back up on me too...

Anyway, last week I decided to tackle emulsioning the 4th wall in our main sitting room, (I did one in 2006 and one last year) - and took me a whole bloody week, leaving me totally wiped out every day despite tackling it a bit at a time. I only made it out of the house twice, too tired and fuddled to drive. Frustrating nightmare illness. . .

Wednesday, December 10, 2008

This Morning | Health | Myalgic Encephalopathy ME 123 - ITV Lifestyle

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.

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!

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."

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.

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

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

video

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"

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

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."

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"

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.

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."

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."

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"

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"

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?

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

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."

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...

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."

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).

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.

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.

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."

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.