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. "
Friday, October 20, 2006
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."
Monday, June 12, 2006
Chronic Fatigue myths debunked
Tuesday, May 16, 2006
ME Awareness Week pembrokeshiretv.com
pembrokeshiretv.com - News, Sport, Information and Entertainment: "ME Awareness Week began yesterday. "
How very apt as today I am very aware of just how knackered I still am - mum came to visit and I made spanish omelette and salad plus we went to the garden center for a bag of multi purpose compost and some composting stuff to speed up my new compster...and I am absolutly bushed, banging headache and struggling to hold a sensible conversation as at least half the words I want elude me - when I can put together a cohenrent thought or two...
One interesting point iss this re W.H.O that ME is now officially a neurological illness... " This tiredness is very different from normal tiredness. Normal tiredness is relieved by rest, but tiredness felt by ME sufferers is not. It is incredibly debilitating.
“Simple mental or physical tasks can leave ME sufferers feeling shattered or struggling to function. The simplest everyday tasks that used to be easy are very difficult, even impossible.”
The illness is recognised by the UK government but there is currently no government funded research into it. It is classified as a neurological illness by the World Health Organisation."
I am still pissed with myself for not just giving the neurologist my prepared description of my symptoms with a rough chronology and letting him dominate and intimidate me a little so I did not stress my full range of symptoms especially the tiredness and pain....not that there is much that can be done....off for a rest and to contemplate tackling getting the composter into place...
How very apt as today I am very aware of just how knackered I still am - mum came to visit and I made spanish omelette and salad plus we went to the garden center for a bag of multi purpose compost and some composting stuff to speed up my new compster...and I am absolutly bushed, banging headache and struggling to hold a sensible conversation as at least half the words I want elude me - when I can put together a cohenrent thought or two...
One interesting point iss this re W.H.O that ME is now officially a neurological illness... " This tiredness is very different from normal tiredness. Normal tiredness is relieved by rest, but tiredness felt by ME sufferers is not. It is incredibly debilitating.
“Simple mental or physical tasks can leave ME sufferers feeling shattered or struggling to function. The simplest everyday tasks that used to be easy are very difficult, even impossible.”
The illness is recognised by the UK government but there is currently no government funded research into it. It is classified as a neurological illness by the World Health Organisation."
I am still pissed with myself for not just giving the neurologist my prepared description of my symptoms with a rough chronology and letting him dominate and intimidate me a little so I did not stress my full range of symptoms especially the tiredness and pain....not that there is much that can be done....off for a rest and to contemplate tackling getting the composter into place...
Saturday, May 13, 2006
Cognitive Impairment - Chronic Fatigue Syndrome
psychosocial model versus evidence of measurable biomedical anomalies in (ME)CFS Cognitive Impairment is it not time for an integrated approach? I for one am aware that both models have some beneficial aspects and the 2 - psychosocial and biomedical interact within each individual.....
Am still very unsure about my consultation with the neurologistas he started quite aggresively anyway lets see if the scan shows anything
Am still very unsure about my consultation with the neurologistas he started quite aggresively anyway lets see if the scan shows anything
Wednesday, April 26, 2006
Research: Green Tea's Protective Role in Autoimmune Disease - Chronic Fatigue Syndrome & Fibromyalgia Related News
Could green tea help my fibromyalgia symptoms?
Research: Green Tea's Protective Role in Autoimmune Disease - Chronic Fatigue Syndrome & Fibromyalgia Related News: "Green tea seems to help protect the body from autoimmune disorders, according to a Medical College of Georgia oral biologist. Dr. Stephen Hsu, a researcher in the MCG School of Dentistry, has amassed a large bank of research helping document green tea's health benefits in everything from oral cancer to wrinkles."
His recent findings concern "autoimmune diseases. These diseases, such as type 1 diabetes, rheumatoid arthritis, lupus and Sjogren's disease, inexplicably prime the body's immune system to attack its own tissues, with often disabling and even life-threatening consequences"
Research: Green Tea's Protective Role in Autoimmune Disease - Chronic Fatigue Syndrome & Fibromyalgia Related News: "Green tea seems to help protect the body from autoimmune disorders, according to a Medical College of Georgia oral biologist. Dr. Stephen Hsu, a researcher in the MCG School of Dentistry, has amassed a large bank of research helping document green tea's health benefits in everything from oral cancer to wrinkles."
His recent findings concern "autoimmune diseases. These diseases, such as type 1 diabetes, rheumatoid arthritis, lupus and Sjogren's disease, inexplicably prime the body's immune system to attack its own tissues, with often disabling and even life-threatening consequences"
Friday, April 14, 2006
Fibromyalgia Sucks Ass - tribe.net
Just found this....and joined...Fibromyalgia Sucks Ass - tribe.net: "Fibromyalgia Sucks Ass tribe!
For men and women with Fibromyalgia and related conditions and symptoms"
For men and women with Fibromyalgia and related conditions and symptoms"
Epstein-Barr Virus May Trigger multiple sclerosis
Count down to my appointment with the neurologist begins in earnest now....just 13 days to go. I am still concerned that I may have multiple sclerosis - my symptoms certainly fit the relapsing remitting type but I have to hope that a diagnosis will lead to improved treatment..
Epstein-Barr Virus May Trigger MS: "Young adults with high levels of antibodies to Epstein-Barr virus appear to be at increased risk for developing multiple sclerosis later in life, new research suggests.
The findings add to the evidence implicating the common virus as a possible trigger for multiple sclerosis, a neurological disease of the central nervous system (brain, spinal cord, and optic nerves)...Researchers have searched for decades for a viral or bacterial agent that may trigger multiple sclerosis in people who are genetically susceptible. Epidemiology professor Alberto Ascherio, MD, and colleagues from the Harvard School of Public Health in Boston have published several studies suggesting that Epstein-Barr virus may be that agent.
"Collectively, the results of this and the previous studies provide compelling evidence that infection with EBV is a risk factor in the development of MS...
it is widely accepted that environmental factors, specifically infections, trigger MS in people who are genetically vulnerable to the disease. But he adds that it is more likely that multiple triggers come into play.
"When we finally understand everything about MS, it may not be a single virus or other infectious agent that is the trigger," he says. "It may well be that different agents act as triggers in different people."
He notes that people with MS tend to generate higher immune responses to many different viruses, including those that cause mumps, German measles, and herpes...
SOURCES: DeLorenze, G.N., Archives of Neurology, April 10, 2006, vol 63: online edition. Alberto Ascherio, MD, DrPH, associate professor of nutrition and epidemiology, Harvard School of Public Health, Boston. John Richert, MD, vice president of research and clinical programs, National Multiple Sclerosis Society. National Multiple Sclerosis Society website: "Just the Facts: 2005-2006."
"
Epstein-Barr Virus May Trigger MS: "Young adults with high levels of antibodies to Epstein-Barr virus appear to be at increased risk for developing multiple sclerosis later in life, new research suggests.
The findings add to the evidence implicating the common virus as a possible trigger for multiple sclerosis, a neurological disease of the central nervous system (brain, spinal cord, and optic nerves)...Researchers have searched for decades for a viral or bacterial agent that may trigger multiple sclerosis in people who are genetically susceptible. Epidemiology professor Alberto Ascherio, MD, and colleagues from the Harvard School of Public Health in Boston have published several studies suggesting that Epstein-Barr virus may be that agent.
"Collectively, the results of this and the previous studies provide compelling evidence that infection with EBV is a risk factor in the development of MS...
it is widely accepted that environmental factors, specifically infections, trigger MS in people who are genetically vulnerable to the disease. But he adds that it is more likely that multiple triggers come into play.
"When we finally understand everything about MS, it may not be a single virus or other infectious agent that is the trigger," he says. "It may well be that different agents act as triggers in different people."
He notes that people with MS tend to generate higher immune responses to many different viruses, including those that cause mumps, German measles, and herpes...
SOURCES: DeLorenze, G.N., Archives of Neurology, April 10, 2006, vol 63: online edition. Alberto Ascherio, MD, DrPH, associate professor of nutrition and epidemiology, Harvard School of Public Health, Boston. John Richert, MD, vice president of research and clinical programs, National Multiple Sclerosis Society. National Multiple Sclerosis Society website: "Just the Facts: 2005-2006."
"
Researchers Bring Hope to Fibromyalgia Syndrome
I am still very very pleased with result I have from Allegron ( Nortriptyline) - finally I sleep without waking 3,4,5 or more times every hour, my pain and aches are much diminished and so are all other symptoms like brain fog, vision problems, migraines etc but I still feel soo tired most of the time...suppose 6 months of feeling a bit better is still maybe too short to hope for a complete recovery...anyway it sounds likee this drug has similar effects for som fibro patients...
Dream Catchers: Researchers Bring Hope to Fibromyalgia Syndrome: "For 12 years Bebette Rubio considered herself lucky if she got two full hours of sleep a night. The 40-year-old mother of three suffers from fibromyalgia syndrome, a common clinical condition marked by widespread body pain, a form of body tenderness, fatigue, morning stiffness and disrupted sleep. Fibromyalgia affects 1 in 50 Americans, mostly women...
Jon Russell, M.D., Ph.D., associate professor of medicine at the Health Science Center, who had just completed a clinical study of a drug called sodium oxybate.
"No medication is currently approved by the U.S. Food and Drug Administration for the treatment of fibromyalgia syndrome; physicians treat the disorder with medications officially approved for other purposes," said Dr. Russell, who is the study’s lead researcher. "This study clearly demonstrated that sodium oxybate is a novel option of therapy for patients coping with fibromyalgia syndrome...Sodium oxybate is marketed as Xyrem® in the United States by Orphan Medical...
sodium oxybate, currently approved for the treatment of cataplexy in patients with narcolepsy, significantly improved patients’ self-reported perceptions of their own pain and enhanced the quality of their sleep. At the higher of two dosages studied, the drug also reduced tenderness.... Experts suspect that fibromyalgia syndrome dates back to the 1400s, yet it is a condition that is often misunderstood and misdiagnosed. It need not be so," Dr. Russell said
"
Dream Catchers: Researchers Bring Hope to Fibromyalgia Syndrome: "For 12 years Bebette Rubio considered herself lucky if she got two full hours of sleep a night. The 40-year-old mother of three suffers from fibromyalgia syndrome, a common clinical condition marked by widespread body pain, a form of body tenderness, fatigue, morning stiffness and disrupted sleep. Fibromyalgia affects 1 in 50 Americans, mostly women...
Jon Russell, M.D., Ph.D., associate professor of medicine at the Health Science Center, who had just completed a clinical study of a drug called sodium oxybate.
"No medication is currently approved by the U.S. Food and Drug Administration for the treatment of fibromyalgia syndrome; physicians treat the disorder with medications officially approved for other purposes," said Dr. Russell, who is the study’s lead researcher. "This study clearly demonstrated that sodium oxybate is a novel option of therapy for patients coping with fibromyalgia syndrome...Sodium oxybate is marketed as Xyrem® in the United States by Orphan Medical...
sodium oxybate, currently approved for the treatment of cataplexy in patients with narcolepsy, significantly improved patients’ self-reported perceptions of their own pain and enhanced the quality of their sleep. At the higher of two dosages studied, the drug also reduced tenderness.... Experts suspect that fibromyalgia syndrome dates back to the 1400s, yet it is a condition that is often misunderstood and misdiagnosed. It need not be so," Dr. Russell said
"
Catch up time...tired of being tired
..no racing today so time to tackle my bulging inbox. However hard I try to keep on top of posting about my life journey with fibromyalgia and about related news and research into relted topics like chronic fatigue syndrome or ME I always seem to be too tired or have no time...so today I will try to round up the most important articles...
Lifestyle maybe accounts for some percentage of cases of chronic fatigue but I doubt if it explains all cases adequately..Naples Sun Times - Local News - 04/11/2006 - I'm so tired of being tired: "I'm not surprised that symptoms of the chronic fatigue syndrome are more often found in women ages 20 to 50, who have full-time jobs besides being housewives.
What do you say: Is something wrong with our bodies or something wrong with the way we're living?"
Lifestyle maybe accounts for some percentage of cases of chronic fatigue but I doubt if it explains all cases adequately..Naples Sun Times - Local News - 04/11/2006 - I'm so tired of being tired: "I'm not surprised that symptoms of the chronic fatigue syndrome are more often found in women ages 20 to 50, who have full-time jobs besides being housewives.
What do you say: Is something wrong with our bodies or something wrong with the way we're living?"
Sunday, April 02, 2006
Some of the abnormalities that have been demonstrated in ME/CFS - Eileen Marshall and Margaret Williams - 310306
Hugely impressive article siting evidence that CFS & ME are not "all in your mind" rather the research shows organic abnormalities which are likely causes or origin of the symptoms. A real disgrace if the patient is blamed - as I was by one particular psychiatrist - and not given the appropriate treatment. Some of the abnormalities that have been demonstrated in ME/CFS - Eileen Marshall and Margaret Williams - 310306: "Some of the abnormalities that have been demonstrated in ME/CFS Eileen Marshall Margaret Williams 31st March 2006...
I find this item most interesting...I wondere where fibromyalgia is?
There is:
"evidence that ME/CFS is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between MS and lupus) "
Also: "there is evidence that up to 92% of ME/CFS patients also have irritable bowel syndrome (IBS)"
Of the items I can understand or know I have without specific tests I can tick off at least half the list as applying to me.
I find this item most interesting...I wondere where fibromyalgia is?
There is:
"evidence that ME/CFS is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between MS and lupus) "
Also: "there is evidence that up to 92% of ME/CFS patients also have irritable bowel syndrome (IBS)"
Of the items I can understand or know I have without specific tests I can tick off at least half the list as applying to me.
Monday, March 20, 2006
The Model of the Myth? - Eileen Marshall and Margaret Williams - 17th March 2006
This is the debate surrounding anti-psychiatry re CFS and related conditions that I want to be fluent in for my appointment next month with the neurologist...The Model of the Myth? - Eileen Marshall and Margaret Williams - 17th March 2006: "In �The myth of the biopsychosocial model�, N McLaren exposes once and for all the myth upon which the so-called �biopsychosocial� model of illness so favoured by Wessely School psychiatrists depends (Australian and New Zealand Journal of Psychiatry, March 2006:40:277)."
Notable quotes:
"“What we see is that, rather than trying to improve their skills in the area of supposed expertise, some (psychiatrists) are increasingly encroaching upon and appropriating physical illnesses, among them CFS/ME, in which they have no expertise.
“Some psychiatrists act as if the large body of evidence of the physical abnormalities in CFS/ME did not exist and pass the illness off as some kind of belief disorder.
“Psychiatry is replete with examples of the abandonment of humanity, ethics and common sense.
“Why should psychiatrists’ self-generated aura of infallibility in judging the human condition be accepted? Where is the evidence to back up this claim?
“While you have such an excellent opportunity, I’d like you to ask the psychiatrists how they propose to treat ME/CFS phenomena such as low blood volume, cardiac insufficiency, lack of perfusion to areas of the brain, various immune and neurological abnormalities, channelopathy, Low Molecular Weight RNaseL, many deficiencies eg. of potassium, infections with mycoplasma and viruses, to name a few. As you would know, there is well-researched evidence for all of these and more. How do psychiatrists address these serious problems? How do they manage to ignore the evidence for them and to prescribe treatments which are contraindicated? Is this ethical?
Notable quotes:
"“What we see is that, rather than trying to improve their skills in the area of supposed expertise, some (psychiatrists) are increasingly encroaching upon and appropriating physical illnesses, among them CFS/ME, in which they have no expertise.
“Some psychiatrists act as if the large body of evidence of the physical abnormalities in CFS/ME did not exist and pass the illness off as some kind of belief disorder.
“Psychiatry is replete with examples of the abandonment of humanity, ethics and common sense.
“Why should psychiatrists’ self-generated aura of infallibility in judging the human condition be accepted? Where is the evidence to back up this claim?
“While you have such an excellent opportunity, I’d like you to ask the psychiatrists how they propose to treat ME/CFS phenomena such as low blood volume, cardiac insufficiency, lack of perfusion to areas of the brain, various immune and neurological abnormalities, channelopathy, Low Molecular Weight RNaseL, many deficiencies eg. of potassium, infections with mycoplasma and viruses, to name a few. As you would know, there is well-researched evidence for all of these and more. How do psychiatrists address these serious problems? How do they manage to ignore the evidence for them and to prescribe treatments which are contraindicated? Is this ethical?
Sunday, March 19, 2006
Spring update
It feels like spring now as the first daffodil has just opened - worth that week and a half sat on the ground most of the time to put the bulbs in last autumn. I even managed a short wander round the garden and tidied up some dead bits to let the new growth get the weak sun.
I have decided to cut alcohol out altogether again at least until my appointment with the neurologist.
I really must get my blogging of all the recent research and debate up to date as I will be very interested in their opinion re fibromyalgia and the controversy between psychiatrists and other medical professional. Lets hope I have my brain with me on the day!
I have decided to cut alcohol out altogether again at least until my appointment with the neurologist.
I really must get my blogging of all the recent research and debate up to date as I will be very interested in their opinion re fibromyalgia and the controversy between psychiatrists and other medical professional. Lets hope I have my brain with me on the day!
Thursday, March 09, 2006
Two Studies Find Gray Matter Reduction in CFS Patients
When I get "brain fog" I certailny feel as if my brain has shrunk!
Two Studies Find Gray Matter Reduction in CFS Patients: "Cognitive difficulties are found in 85-95% of CFS patients. Now, cutting-edge research from two independent international groups suggests that the volume of gray matter in the brain is significantly decreased in CFS. This decrease in brain tissue, or cerebral atrophy, may be responsible for cognitive problems in some people with CFS...
Although we don't know if the observed cerbral atrophy is a cause of CFS or a consequence, these findings are alarming some members of the CFS patient community, who are concerned about "brain damage." It's important to note that the studies are small and need to be replicated by other researchers before definite conclusions can be made."
Two Studies Find Gray Matter Reduction in CFS Patients: "Cognitive difficulties are found in 85-95% of CFS patients. Now, cutting-edge research from two independent international groups suggests that the volume of gray matter in the brain is significantly decreased in CFS. This decrease in brain tissue, or cerebral atrophy, may be responsible for cognitive problems in some people with CFS...
Although we don't know if the observed cerbral atrophy is a cause of CFS or a consequence, these findings are alarming some members of the CFS patient community, who are concerned about "brain damage." It's important to note that the studies are small and need to be replicated by other researchers before definite conclusions can be made."
Wednesday, March 08, 2006
Recent Fibromyalgia research Findings
Interesting re neurological involvment, I wonder what the neurologist I am to see next month will have to say....Recent Fibromyalgia Findings: "Although there are some immunological aberrations in FM, including a decreased number of natural killer cells, most researchers now believe that the illness is not an immune system disorder. �Essentially, there is nothing specifically immunological in fibromyalgia � and if there is, whatever little there is, I think it is secondary to the central nervous system problem that fibromyalgia patients have,� says Dr. Muhammad Yunas. �It�s a chronic, neurologic disease....
Recent investigations found multiple triggers for this amped-up response to pain. For instance, FM patients have three to four times higher levels than normal of substance P, a central nervous system neurotransmitter involved in pain processing. Researchers also found lower levels of substances that diminish pain sensation, such as serotonin, norepinephrine and dopamine "
Recent investigations found multiple triggers for this amped-up response to pain. For instance, FM patients have three to four times higher levels than normal of substance P, a central nervous system neurotransmitter involved in pain processing. Researchers also found lower levels of substances that diminish pain sensation, such as serotonin, norepinephrine and dopamine "
Thursday, March 02, 2006
Cytomegalovirus and fibromyalgia
Been to hospital for follow up appointment for my baby after the removal of a lymph gland last December. She has been discharged and the Dr reckons it was due to a viral infection - Cytomegalovirus. Appears to be associated with fibromyalgia frequently going by the number of searches returned in Google for cytomegalovirus AND fibromyalgia but that is hardly a surprise if 50% of the population carry the virus. Good news though..
I am still waiting for an appointment with a neurologist - seems I am non-urgent so it may be anything up to 13 weeks before I see anyone...meanwhile I am still wiped out and get over tired so easily despite now sleeping much better.
Caught Sleeping: Study Captures Cytomegalovirus Dormant in Human Cells (Chronic Fatigue Syndrome & Fibromyalgia News): "Cytomegalovirus, hidden in most people, begins to give up secrets of its stealth. Princeton scientists have taken an important step toward understanding this virus that infects and lies dormant in most people, but emerges as a serious illness in transplant patients, some newborns and other people with weakened immune systems - including those who suffer with Chronic Fatigue Syndrome and fibromyalgia. "
I am still waiting for an appointment with a neurologist - seems I am non-urgent so it may be anything up to 13 weeks before I see anyone...meanwhile I am still wiped out and get over tired so easily despite now sleeping much better.
Caught Sleeping: Study Captures Cytomegalovirus Dormant in Human Cells (Chronic Fatigue Syndrome & Fibromyalgia News): "Cytomegalovirus, hidden in most people, begins to give up secrets of its stealth. Princeton scientists have taken an important step toward understanding this virus that infects and lies dormant in most people, but emerges as a serious illness in transplant patients, some newborns and other people with weakened immune systems - including those who suffer with Chronic Fatigue Syndrome and fibromyalgia. "
Tuesday, February 21, 2006
National Fibromyalgia Association news
Excellent article about Lupus and Fibromyalgia - diagnosis and treatment...
National Fibromyalgia Association: "Overlapping Conditions -------Lupus: The Prototypical Autoimmune Disease
What exactly is this disorder, so often misdiagnosed as Fibromyalgia? "
National Fibromyalgia Association: "Overlapping Conditions -------Lupus: The Prototypical Autoimmune Disease
What exactly is this disorder, so often misdiagnosed as Fibromyalgia? "
Fibromyalgia latest research papers on PubMed
There are more articles about fibromyalgia, but of the recent research papers the following look the most relevent to me and anyone diagnosed with fibromyalgia or caring for someone with fibro...Entrez PubMed:
"Fibromyalgia: understanding the disease and its social implications]
Rev Esp Anestesiol Reanim. 2006 Jan;53(1):1-3. Spanish. PMID: 16475632
Depression and psychosocial factors in Turkish women with fibromyalgia syndrome.
Eura Medicophys. 2005 Dec;41(4):309-13. PMID: 16474286 [PubMed - in process]
Clinical and psychosocial characteristics of subjects with fbromyalgia. Impact of the diagnosis on patients' activities]
New strategies in evaluation of therapeutic efficacy in fibromyalgia syndrome.
Multidisciplinary approaches for management of fibromyalgia.
Complementary and alternative medical therapies in fibromyalgia
"
"Fibromyalgia: understanding the disease and its social implications]
Rev Esp Anestesiol Reanim. 2006 Jan;53(1):1-3. Spanish. PMID: 16475632
Depression and psychosocial factors in Turkish women with fibromyalgia syndrome.
Eura Medicophys. 2005 Dec;41(4):309-13. PMID: 16474286 [PubMed - in process]
Clinical and psychosocial characteristics of subjects with fbromyalgia. Impact of the diagnosis on patients' activities]
New strategies in evaluation of therapeutic efficacy in fibromyalgia syndrome.
Multidisciplinary approaches for management of fibromyalgia.
Complementary and alternative medical therapies in fibromyalgia
"
Monday, February 20, 2006
Chronic fatigue syndrome The Lancet
Well worth reading for up to date fact and opinions - especially the comments by Douglas Fraser
The Lancet: "Summary
During the past two decades, there has been heated debate about chronic fatigue syndrome (CFS) among researchers, practitioners, and patients. Few illnesses have been discussed so extensively. The existence of the disorder has been questioned, its underlying pathophysiology debated, and an effective treatment opposed; patients' organisations have participated in scientific discussions. In this review, we look back on several controversies over CFS with respect to its definition, diagnosis, pathophysiology, and treatment. We review issues of epidemiology and clinical manifestations, focusing on the scientific status of CFS. Modern neuroscience and genetics research offer interesting findings for new hypotheses on the aetiology and pathogenesis of the illness. We also discuss promising future issues, such as psychopathophysiology and mechanisms of improvement, and suggest multidisciplinary prospective studies of CFS and fatigue in the general population."
"It is time therefore, to reject the misleading biopsychosocial CBT-associated "illness model", with it's barely concealed misanthropic,moralising overtones, and to remind those who seek to interfere with theirfellow human being's "ideas", "cognitions", "beliefs", to "educate" doctors,to alter the "patient's environment", to isolate people from their normalsupport frameworks, to manipulate those frameworks whilst insinuating impure motives in those affected by ME/CFS, that no matter how subtlety presented,these are coercive techniques as old as humanity itself, and none too
dissimilar from the "scientifically therapeutic" techniques of "re-education" or "thought reform" that the psychiatrist Robert Jay Lifton identified and delineated in the context of dissidence within Communist China, consisting of (eight) rather uncomfortably similar psychological themes which in combination "create an atmosphere which may temporarily
energize or exhilarate, but which at the same time poses the gravest of human threats" (3)."
The Lancet: "Summary
During the past two decades, there has been heated debate about chronic fatigue syndrome (CFS) among researchers, practitioners, and patients. Few illnesses have been discussed so extensively. The existence of the disorder has been questioned, its underlying pathophysiology debated, and an effective treatment opposed; patients' organisations have participated in scientific discussions. In this review, we look back on several controversies over CFS with respect to its definition, diagnosis, pathophysiology, and treatment. We review issues of epidemiology and clinical manifestations, focusing on the scientific status of CFS. Modern neuroscience and genetics research offer interesting findings for new hypotheses on the aetiology and pathogenesis of the illness. We also discuss promising future issues, such as psychopathophysiology and mechanisms of improvement, and suggest multidisciplinary prospective studies of CFS and fatigue in the general population."
"It is time therefore, to reject the misleading biopsychosocial CBT-associated "illness model", with it's barely concealed misanthropic,moralising overtones, and to remind those who seek to interfere with theirfellow human being's "ideas", "cognitions", "beliefs", to "educate" doctors,to alter the "patient's environment", to isolate people from their normalsupport frameworks, to manipulate those frameworks whilst insinuating impure motives in those affected by ME/CFS, that no matter how subtlety presented,these are coercive techniques as old as humanity itself, and none too
dissimilar from the "scientifically therapeutic" techniques of "re-education" or "thought reform" that the psychiatrist Robert Jay Lifton identified and delineated in the context of dissidence within Communist China, consisting of (eight) rather uncomfortably similar psychological themes which in combination "create an atmosphere which may temporarily
energize or exhilarate, but which at the same time poses the gravest of human threats" (3)."
Is it Lupus, FM or Both
Current Newsletter: "Is it possible to have symptoms of lupus, but actually have fibromyalgia?
A: Figuring out whether a patient has lupus, fibromyalgia or both�which is entirely possible - requires a thorough medical history, physical examination and laboratory tests. Diagnosing lupus and fibromyalgia can be difficult because the conditions share some symptoms.
During the medical history, fibromyalgia patients usually describe fatigue and a generalized muscle pain or soreness of the muscles that often is made worse by lack of quality sleep. Lupus patients may also have fatigue and muscle soreness, but initial symptoms may include a rash across the cheeks and nose that gets worse in sunlight, kidney problems, difficulty breathing or a blood clot, stroke or heart attack."
A: Figuring out whether a patient has lupus, fibromyalgia or both�which is entirely possible - requires a thorough medical history, physical examination and laboratory tests. Diagnosing lupus and fibromyalgia can be difficult because the conditions share some symptoms.
During the medical history, fibromyalgia patients usually describe fatigue and a generalized muscle pain or soreness of the muscles that often is made worse by lack of quality sleep. Lupus patients may also have fatigue and muscle soreness, but initial symptoms may include a rash across the cheeks and nose that gets worse in sunlight, kidney problems, difficulty breathing or a blood clot, stroke or heart attack."
Friday, February 10, 2006
fibromyalgia itching ; scratching, skin complaints, back itch...
Interesting, yet another symptom I have endured AND blamed either my alcohol intake or food additives for!
fibromyalgia itching ; scratching, skin complaints, back itch...: "Itching is just one of a number of skin complaints that Fibromyalgia sufferers can suffer from. And it's apparently one of the most common skin problems among Fibromyalgia sufferers...Do you have Fibromyalgia? Do you find yourself scratching all the time? Do you have dry, itchy skin? Have you developed itchy skin rashes?
Maybe you have back itch? Or itching ears? Or maybe you sometimes even feel that horrible itching sensation all over - as if there are ants crawling all over your body…
Category: Fibromyalgia : fibromyalgia itching , fibromyalgia back itch , scratching , skin complaints , skin problems
Common misspellings of fibromyalgia : fibro myalga, fibro mialga, fibro maligia, fibro mailgia, fibro mayaglia, fibro milagia, fibro myealgeia, fibro myalja, fibro myalgea"
fibromyalgia itching ; scratching, skin complaints, back itch...: "Itching is just one of a number of skin complaints that Fibromyalgia sufferers can suffer from. And it's apparently one of the most common skin problems among Fibromyalgia sufferers...Do you have Fibromyalgia? Do you find yourself scratching all the time? Do you have dry, itchy skin? Have you developed itchy skin rashes?
Maybe you have back itch? Or itching ears? Or maybe you sometimes even feel that horrible itching sensation all over - as if there are ants crawling all over your body…
Category: Fibromyalgia : fibromyalgia itching , fibromyalgia back itch , scratching , skin complaints , skin problems
Common misspellings of fibromyalgia : fibro myalga, fibro mialga, fibro maligia, fibro mailgia, fibro mayaglia, fibro milagia, fibro myealgeia, fibro myalja, fibro myalgea"
Concerns about Commercial Conflicts of Interest
Concerns about Commercial Conflicts of Interest: Info "relevant to the Gibson Inquiry, specifically the continued ignoring by the Department of Work and Pensions (DWP) and its commercial advisers of the compelling scientific evidence that myalgic encephalomyelitis / chronic fatigue syndrome is not a primary psychiatric disorder. If eligibility for certain benefits becomes contingent upon the intended implementation of compulsory psychiatric �rehabilitation� regimes, in cases of authentic ME/CFS it is likely to result in serious relapse that may be life-long (and may in some cases even result in death)"
Two major concerns which interest me in particular:
"Senior Psychiatrists collude with Medical Insurers to classify ME/CFS as a psychiatric disorder
Government Departments recognise ME/CFS as an organic illness"
(a) the commercial conflict of interest underlying the Department of Work and Pensions (DWP) Disability Handbook entry on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and
(b) some aspects of the impending Incapacity Benefit reform.
It is of particular concern that:
as far as ME/CFS is concerned (and in general), the proposed psychiatric “rehabilitation” regimes ie. CBT (cognitive behavioural therapy) and GET (graded exercise therapy) that are to be imposed on UK claimants are poorly researched; they have already been shown to be of no lasting benefit, and they may be harmful: in four surveys of a total of 3,074 ME/CFS patients, 77% of those who had tried CBT found that it either made no difference or made things worse, and of the 1,467 patients who had tried a graded exercise “rehabilitation” regime, 48% found it to be the most harmful intervention
financial compulsion will rob claimants of their right to give free consent to medical treatment
the treatment regime of the patient’s own doctor will be overridden
patients with no psychiatric history will be forced to attend mental health units
Since the involvement of UNUMProvident in the UK welfare system, so-called “medically unexplained” disorders with no definitive diagnostic test have become a prime target for the refusal and withdrawal of not only State sickness and disability benefits but also of medical insurance benefits: myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) has been specifically targeted by psychiatrists from the “Wessely School”, so named after its most notorious activist Professor Simon Wessely, who is on record as stating that ME does not exist.
Wessely School psychiatrists are heavily involved with UNUM and with the medical insurance industry in general; insurance companies in addition to UNUM with which they are known to be directly involved include Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life, and Permanent Insurance, and as re-insurers, the massive Swiss Re (whose building in London has been dubbed the “gherkin”). For further information on the involvement of Wessely School psychiatrists with the insurance industry, see
http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm
Wessely School psychiatrists have also been zealous in their efforts to remove ME/CFS from the World Health Organisation (WHO) formal classification as a neurological disorder and to get it re-classified as a “mental” disorder. If a definitive test existed, it would be impossible to refute the serious organic pathology that has been internationally demonstrated to underpin ME/CFS. Without such a definitive test, Wessely School psychiatrists are more likely to be successful in their aim of re-classifying ME/CFS as a “mental” disorder, with resultant profits for their paymasters, because “mental” disorders are excluded from insurance cover. On the other hand, if the correct investigations were permitted to be carried out in the UK, and if the evidence of complex multi-system abnormalities was allowed to surface, then the psychiatrists’ paymasters could not legitimately disregard such evidence and company profits would plummet. The insurance industry is determined that this must not happen: UNUM’s “Chronic Fatigue Syndrome Management Plan” (dated 4th April 1995 and authored by Dr Carolyn L Jackson) makes this clear: “UNUM stands to lose millions if we do not move quickly to address this increasing problem”.
If those with ME/CFS who are incapable of work are deemed ineligible for State disability benefits, and if their medical insurance company refuses to pay out, what happens to them? In 21st century Britain, unless those with ME/CFS accept that they have a mental / behavioural disorder, with consequent loss of higher-rate State benefits for which they ought to qualify, they are simply abandoned, because the UK DWP has effectively sanctioned the withdrawal of support from those who most need it.
All....This is despite the fact that the same Government bodies are on official record on many occasions as accepting that ME/CFS is an organic disorder.
Government Departments recognise ME/CFS as an organic disorder
ME was recognised as a physical disorder on 27th November 1987 (Hansard: HC353)
Dr Peter Dewis from the DWP / DLA Advisory Board (who, together with Professor Mansel Aylward authored the Disability Handbook and is now Chief Medical Officer at UNUMProvident – see below) confirmed that before Attendance Allowance became the Disabled Living Allowance (DLA), decisions on eligibility for State sickness and disability benefits were made by doctors (hence the “Handbook for Delegated Medical Practitioners”), but since the advent of DLA, such decisions are now made by non-medical personnel, and the “Disability Handbook” is a guide for these non-medical decision-makers.
Members of Parliament are on record as being gravely concerned about the difficulties their constituents with ME/CFS face with UNUM, as recorded in the House of Commons debate chaired by Sir Alan Haselhurst on 21st December 1999..
In the 2004 “Fitness for Work” Handbook (the definitive text on fitness for work assessment), chronic fatigue syndrome (ME) appears in the chapter on ‘Psychiatric Disorders’.
On 28th June 2004 the Minister for the Disabled, Maria Eagle MP (part of the team running the DWP) was asked by ME Association Trustee Mrs Angela Flack why unfair obstacles are placed on people with ME/CFS to prove their illness beyond doubt, mostly with little support from GPs, social workers and occupational therapists, who themselves have little knowledge of the condition. Maria Eagle then invited the ME Association to give her proof that the DWP’s Disability Handbook did not accurately reflect the severe disabling effects of ME.
Despite this invitation, it seems that the evidence provided has been consistently ignored and that the psychiatric bias continues to dominate DWP thinking about ME/CFS.
The ME Association magazine “ME Essential” (October 2004, page 2) reported that new DWP proposals would force those who claim Incapacity Benefit to have a medical check-up every three months and to undergo “continuous reassessment”. If claimants turn down what the DWP deemed to be “suitable” work, their benefits could be axed altogether. An ME Association member from Lincoln, Mrs Mary Daley, wrote: “I claim the benefit and find the annual review stressful enough. The new proposals will mean a continuous review and a medical every three months. These changes amount to harassment of very ill people. ME sufferers have a hard enough time claiming their rightful benefits, and then to be physically and mentally tortured in this way is a terrible prospect”.
On 10th June 2005, new draft Guidelines on the eligibility of those with ME/CFS for State disability benefits were handed out at the close of a meeting held at the DWP. The new draft revision had been drawn up by the “CFS Group” at the DWP to replace the existing entry in their Decision-Makers’ Handbook; the draft Guidelines were handed out on the basis that their circulation was to be restricted to those at the meeting.
However, this draft version has been obtained and is now available to members of the public through the good auspices of Steve Donnison, webmaster at www.benefitsandwork.co.uk, to whom grateful acknowledgement is made. Enquiries should be directed to info@benefitsandwork.co.uk .
It has been ascertained that the group responsible for this draft consists mostly of those whose psychiatric bias is well known: as a result the Guidelines on ME/CFS are extremely biased, and in many respects demonstrably misleading and erroneous. The group is led by Peter White, Professor of Psychological Medicine at St Bartholomew’s and The London Queen Mary School of Medicine and Dentistry; other members include Professor Tom Sensky from the Department of Psychological Medicine, Imperial College, London (representing the DLAAB); Dr William Bruce-Jones, Consultant and Liaison Psychiatrist, Avon & Wiltshire Partnership Trust; Dr AK Clarke, Medical Director, Royal National Hospital for Rheumatic Diseases, Bath (with a physiotherapist and an occupational therapist from his unit), but no immunologist, neurologist or vascular medicine specialist with published expertise in ME/CFS...
“Clinical examination: specifically there are no abnormal signs found in the neurological or musculoskeletal systems” (this is untrue: there are definite abnormalities in these systems, for example, an abnormal Romberg test; nystagmus; altered tandem gait; ataxia; neuromuscular incoordination; typical cogwheel movement of both legs, course tremor of hands when arms are held outstretched, discolouration of the skin with autonomic circulatory changes indicating abnormal vaso-receptor control etc)
“Neuromuscular function is normal” (this is untrue)
“Impairment of cognitive function (is) usually only mild” (this is untrue)
Two major concerns which interest me in particular:
"Senior Psychiatrists collude with Medical Insurers to classify ME/CFS as a psychiatric disorder
Government Departments recognise ME/CFS as an organic illness"
(a) the commercial conflict of interest underlying the Department of Work and Pensions (DWP) Disability Handbook entry on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and
(b) some aspects of the impending Incapacity Benefit reform.
It is of particular concern that:
as far as ME/CFS is concerned (and in general), the proposed psychiatric “rehabilitation” regimes ie. CBT (cognitive behavioural therapy) and GET (graded exercise therapy) that are to be imposed on UK claimants are poorly researched; they have already been shown to be of no lasting benefit, and they may be harmful: in four surveys of a total of 3,074 ME/CFS patients, 77% of those who had tried CBT found that it either made no difference or made things worse, and of the 1,467 patients who had tried a graded exercise “rehabilitation” regime, 48% found it to be the most harmful intervention
financial compulsion will rob claimants of their right to give free consent to medical treatment
the treatment regime of the patient’s own doctor will be overridden
patients with no psychiatric history will be forced to attend mental health units
Since the involvement of UNUMProvident in the UK welfare system, so-called “medically unexplained” disorders with no definitive diagnostic test have become a prime target for the refusal and withdrawal of not only State sickness and disability benefits but also of medical insurance benefits: myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) has been specifically targeted by psychiatrists from the “Wessely School”, so named after its most notorious activist Professor Simon Wessely, who is on record as stating that ME does not exist.
Wessely School psychiatrists are heavily involved with UNUM and with the medical insurance industry in general; insurance companies in addition to UNUM with which they are known to be directly involved include Swiss Life, Canada Life, Norwich Union, Allied Dunbar, Sun Alliance, Skandia, Zurich Life, and Permanent Insurance, and as re-insurers, the massive Swiss Re (whose building in London has been dubbed the “gherkin”). For further information on the involvement of Wessely School psychiatrists with the insurance industry, see
http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm
Wessely School psychiatrists have also been zealous in their efforts to remove ME/CFS from the World Health Organisation (WHO) formal classification as a neurological disorder and to get it re-classified as a “mental” disorder. If a definitive test existed, it would be impossible to refute the serious organic pathology that has been internationally demonstrated to underpin ME/CFS. Without such a definitive test, Wessely School psychiatrists are more likely to be successful in their aim of re-classifying ME/CFS as a “mental” disorder, with resultant profits for their paymasters, because “mental” disorders are excluded from insurance cover. On the other hand, if the correct investigations were permitted to be carried out in the UK, and if the evidence of complex multi-system abnormalities was allowed to surface, then the psychiatrists’ paymasters could not legitimately disregard such evidence and company profits would plummet. The insurance industry is determined that this must not happen: UNUM’s “Chronic Fatigue Syndrome Management Plan” (dated 4th April 1995 and authored by Dr Carolyn L Jackson) makes this clear: “UNUM stands to lose millions if we do not move quickly to address this increasing problem”.
If those with ME/CFS who are incapable of work are deemed ineligible for State disability benefits, and if their medical insurance company refuses to pay out, what happens to them? In 21st century Britain, unless those with ME/CFS accept that they have a mental / behavioural disorder, with consequent loss of higher-rate State benefits for which they ought to qualify, they are simply abandoned, because the UK DWP has effectively sanctioned the withdrawal of support from those who most need it.
All....This is despite the fact that the same Government bodies are on official record on many occasions as accepting that ME/CFS is an organic disorder.
Government Departments recognise ME/CFS as an organic disorder
ME was recognised as a physical disorder on 27th November 1987 (Hansard: HC353)
Dr Peter Dewis from the DWP / DLA Advisory Board (who, together with Professor Mansel Aylward authored the Disability Handbook and is now Chief Medical Officer at UNUMProvident – see below) confirmed that before Attendance Allowance became the Disabled Living Allowance (DLA), decisions on eligibility for State sickness and disability benefits were made by doctors (hence the “Handbook for Delegated Medical Practitioners”), but since the advent of DLA, such decisions are now made by non-medical personnel, and the “Disability Handbook” is a guide for these non-medical decision-makers.
Members of Parliament are on record as being gravely concerned about the difficulties their constituents with ME/CFS face with UNUM, as recorded in the House of Commons debate chaired by Sir Alan Haselhurst on 21st December 1999..
In the 2004 “Fitness for Work” Handbook (the definitive text on fitness for work assessment), chronic fatigue syndrome (ME) appears in the chapter on ‘Psychiatric Disorders’.
On 28th June 2004 the Minister for the Disabled, Maria Eagle MP (part of the team running the DWP) was asked by ME Association Trustee Mrs Angela Flack why unfair obstacles are placed on people with ME/CFS to prove their illness beyond doubt, mostly with little support from GPs, social workers and occupational therapists, who themselves have little knowledge of the condition. Maria Eagle then invited the ME Association to give her proof that the DWP’s Disability Handbook did not accurately reflect the severe disabling effects of ME.
Despite this invitation, it seems that the evidence provided has been consistently ignored and that the psychiatric bias continues to dominate DWP thinking about ME/CFS.
The ME Association magazine “ME Essential” (October 2004, page 2) reported that new DWP proposals would force those who claim Incapacity Benefit to have a medical check-up every three months and to undergo “continuous reassessment”. If claimants turn down what the DWP deemed to be “suitable” work, their benefits could be axed altogether. An ME Association member from Lincoln, Mrs Mary Daley, wrote: “I claim the benefit and find the annual review stressful enough. The new proposals will mean a continuous review and a medical every three months. These changes amount to harassment of very ill people. ME sufferers have a hard enough time claiming their rightful benefits, and then to be physically and mentally tortured in this way is a terrible prospect”.
On 10th June 2005, new draft Guidelines on the eligibility of those with ME/CFS for State disability benefits were handed out at the close of a meeting held at the DWP. The new draft revision had been drawn up by the “CFS Group” at the DWP to replace the existing entry in their Decision-Makers’ Handbook; the draft Guidelines were handed out on the basis that their circulation was to be restricted to those at the meeting.
However, this draft version has been obtained and is now available to members of the public through the good auspices of Steve Donnison, webmaster at www.benefitsandwork.co.uk, to whom grateful acknowledgement is made. Enquiries should be directed to info@benefitsandwork.co.uk .
It has been ascertained that the group responsible for this draft consists mostly of those whose psychiatric bias is well known: as a result the Guidelines on ME/CFS are extremely biased, and in many respects demonstrably misleading and erroneous. The group is led by Peter White, Professor of Psychological Medicine at St Bartholomew’s and The London Queen Mary School of Medicine and Dentistry; other members include Professor Tom Sensky from the Department of Psychological Medicine, Imperial College, London (representing the DLAAB); Dr William Bruce-Jones, Consultant and Liaison Psychiatrist, Avon & Wiltshire Partnership Trust; Dr AK Clarke, Medical Director, Royal National Hospital for Rheumatic Diseases, Bath (with a physiotherapist and an occupational therapist from his unit), but no immunologist, neurologist or vascular medicine specialist with published expertise in ME/CFS...
“Clinical examination: specifically there are no abnormal signs found in the neurological or musculoskeletal systems” (this is untrue: there are definite abnormalities in these systems, for example, an abnormal Romberg test; nystagmus; altered tandem gait; ataxia; neuromuscular incoordination; typical cogwheel movement of both legs, course tremor of hands when arms are held outstretched, discolouration of the skin with autonomic circulatory changes indicating abnormal vaso-receptor control etc)
“Neuromuscular function is normal” (this is untrue)
“Impairment of cognitive function (is) usually only mild” (this is untrue)
Tuesday, January 31, 2006
Paradoxical heat sensation
Yup, a nice new symptom to worry about "Paradoxical heat sensation" according to google is more usually associated with multiple sclerosis or uremic polyneuropathy, one has to search very hard to find any mention of fibromyalgia...too tired to read this article now, will have to come back to it - if I remember...Entrez PubMed: "Quantitative and qualitative perceptual analysis of cold dysesthesia and hyperalgesia in fibromyalgia...
The combination of cold hyperesthesia, cold dysesthesia, and multimodal hyperalgesia suggests a selective pathophysiology at a particular level of integration, possibly in the insular cortex. It is suggested that the aberrations revealed by the supraliminal sensory evaluation may be generic for FMS. Particularly, the aberrations established in all patients for perceived quality and intensity in the cold sensory channel may be an additional diagnostic criterion.
"
The combination of cold hyperesthesia, cold dysesthesia, and multimodal hyperalgesia suggests a selective pathophysiology at a particular level of integration, possibly in the insular cortex. It is suggested that the aberrations revealed by the supraliminal sensory evaluation may be generic for FMS. Particularly, the aberrations established in all patients for perceived quality and intensity in the cold sensory channel may be an additional diagnostic criterion.
"
Kevin, M.D. - Medical Weblog: Doctors using Google part 2: A day in my life
World changing, life saving? Information.....Kevin, M.D. - Medical Weblog: Doctors using Google part 2: A day in my life: "Doctors using Google part 2: A day in my life"
Saturday, January 21, 2006
A Hummingbirds Guide to M.E. A site I will be re-visiting
A Hummingbirds Guide to M.E. :: Information on severe Myalgic Encephalomyelitis: "About the term ME/ICD-CFS...
*Note: The term ME/ICD-CFS may not be widely known as yet but it is used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems."
*Note: The term ME/ICD-CFS may not be widely known as yet but it is used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems."
depression & fibromyalgia occur together
Major depression, fibromyalgia and work status PDF
"CONCLUSIONS: Fibromyalgia and major depression commonly co-occur and may be related to each other at a pathophysiological level. However, each syndrome is independently and negatively associated with labour force participation.
A strength of this study is that it was conducted in a large probability sample from the general population. The main limitations are its cross-sectional nature, and its reliance on self-reported diagnoses of fibromyalgia.
"CONCLUSIONS: Fibromyalgia and major depression commonly co-occur and may be related to each other at a pathophysiological level. However, each syndrome is independently and negatively associated with labour force participation.
A strength of this study is that it was conducted in a large probability sample from the general population. The main limitations are its cross-sectional nature, and its reliance on self-reported diagnoses of fibromyalgia.
Sunday, January 15, 2006
Cough suppressant may ease fibromyalgia pain - PakTribune
News re fibromyalgia treatments Cough suppressant may ease fibromyalgia pain - PakTribune: "A medication normally used to quiet a stubborn cough may also help ease the chronic pain of fibromyalgia, a small study suggests.
Researchers found that the cough suppressant, dextromethorphan, temporarily diminished pain perception in both fibromyalgia patients and healthy adults. The benefit appears to stem from the fact that dextromethorphan blocks the action of a chemical messenger known as NMDA, which helps relay pain signals to the brain.....
Fibromyalgia is a disorder marked by widespread muscle pain and tenderness, fatigue and sleep problems. To be diagnosed with the condition, a person must have pain or tenderness in a number of specific "tender points" on the body.
The cause of fibromyalgia is unknown, but researchers generally believe that people with the condition have "amplified" pain signals due to abnormal sensory processing in the central nervous system.
One theory has held that fibromyalgia "wind-up" pain -- in which repeated touches create pain that intensifies with each new contact -- is caused by an abnormality in the spinal cord structures that process NMDA.
But in the new study, dextromethorphan was as effective at easing pain in the 14 women with fibromyalgia as it was for 10 women without the condition.
Since dextromethorphan acts on NMDA receptors, the findings suggest that people with fibromyalgia do not have a "radically altered" NMDA system, according to Staud’s team."
fibromyalgia symptoms treatment with a single dose of dextromethorphan, however, reduced the women’s pain response to the tests -- with women with fibromyalgia benefiting as much as those without the condition.
According to Staud, dextromethorphan could eventually find a place in the repertoire of treatments for chronic pain.
"What this really means for chronic pain patients is that they need to use a whole host of different interventions to decrease the pain they have," he said. "And in this, dextromethorphan may have a role in the future."
Researchers found that the cough suppressant, dextromethorphan, temporarily diminished pain perception in both fibromyalgia patients and healthy adults. The benefit appears to stem from the fact that dextromethorphan blocks the action of a chemical messenger known as NMDA, which helps relay pain signals to the brain.....
Fibromyalgia is a disorder marked by widespread muscle pain and tenderness, fatigue and sleep problems. To be diagnosed with the condition, a person must have pain or tenderness in a number of specific "tender points" on the body.
The cause of fibromyalgia is unknown, but researchers generally believe that people with the condition have "amplified" pain signals due to abnormal sensory processing in the central nervous system.
One theory has held that fibromyalgia "wind-up" pain -- in which repeated touches create pain that intensifies with each new contact -- is caused by an abnormality in the spinal cord structures that process NMDA.
But in the new study, dextromethorphan was as effective at easing pain in the 14 women with fibromyalgia as it was for 10 women without the condition.
Since dextromethorphan acts on NMDA receptors, the findings suggest that people with fibromyalgia do not have a "radically altered" NMDA system, according to Staud’s team."
fibromyalgia symptoms treatment with a single dose of dextromethorphan, however, reduced the women’s pain response to the tests -- with women with fibromyalgia benefiting as much as those without the condition.
According to Staud, dextromethorphan could eventually find a place in the repertoire of treatments for chronic pain.
"What this really means for chronic pain patients is that they need to use a whole host of different interventions to decrease the pain they have," he said. "And in this, dextromethorphan may have a role in the future."
New Year new fibromyalgia symptom free me
I wish.....am now on 100mg nortryptoline and not too sure although I am sleeping better and in a bit less pain I have a few side effects including lack of judgement and burning feelings down my left side especially in my face. Due a review with my GP last week so will update after that..
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