Daily Mail explain why they pulled their poll on whether ME is a genuine illness: "The Daily Mail have apologised for their controversial website poll 'Do you think ME is a genuine illness?'. The poll – originally put up to accompany the paper's coverage of the XMRV debate – was pulled from the website after a huge outcry from many people with ME/CFS and a sustained email campaign from several Facebook pages.
In an email signed by assistant editor Charles Garside, the Daily Mail wrote:
'First of all, let me apologise sincerely for any offence that may have been caused.
'The poll to which you refer was posted by a junior member of staff of Mail Online in response to a story which questioned once again the causes of ME.
'As I am sure you are aware, there is still a great deal to learn about what lies behind the condition. However, I entirely accept that this is completely different from suggesting that the condition itself is not real, regardless of the cause.
'I am pleased to report that once the clumsy nature of the poll was drawn to more senior staff's attention it was immediately removed from the website.
'The Mail - both the paper and online - prides itself on its coverage of medical matters and has devoted much resource over the years into covering the search of the causes and a cure for ME. Rest assured that we will continue to do this and that its sufferers continue to enjoy our full sympathy and support.
'We do appreciate all feedback - whether positive or negative - and I am particularly grateful to you for taking the time and trouble to draw this to our attention.'"
Survival tips, diet, recipes, useful fibro resources, books, M.E./ CFS & fibromyalgia news.
Saturday, January 16, 2010
Friday, January 15, 2010
Thursday, January 14, 2010
Feeling fluey
Yet gain I failed miserably to get two quality rests yesterday, in fact I didnt even manage one - what is blocking me?
As a result I was too tired to cook dinner so we both just had a tin of soup, usually try to avoid anything ready made but it was desperate. It was t'other halfs night to dad sit ( dad has severe dementia and P goes round two nights a week to supplement the carers services and try to proovide some quality time for him). I ust about managed to watch Emmerdale but was flat out on the settee when P got home about 8.30. Only woke a few times during the night ( thanks to Nortryptaline) but am still eye-crossingly tired this morning with hot flu like head...guess I really must get those rests in....
As a result I was too tired to cook dinner so we both just had a tin of soup, usually try to avoid anything ready made but it was desperate. It was t'other halfs night to dad sit ( dad has severe dementia and P goes round two nights a week to supplement the carers services and try to proovide some quality time for him). I ust about managed to watch Emmerdale but was flat out on the settee when P got home about 8.30. Only woke a few times during the night ( thanks to Nortryptaline) but am still eye-crossingly tired this morning with hot flu like head...guess I really must get those rests in....
Wednesday, January 13, 2010
CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help
CFS & Fibromyalgia Rating Scale | CFIDS & Fibromyalgia Self-Help: &
CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.
CFS & Fibromyalgia Rating Scale
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activity level with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.
Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help
Finding Your Energy Envelope, Part 1 | CFIDS & Fibromyalgia Self-Help: "Finding Your Limits: A Quick Answer
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Doh, should have done this first...I come out as;
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Doh, should have done this first...I come out as;
20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day
Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help
Managing Your Energy Envelope | CFIDS & Fibromyalgia Self-Help: "Managing Your Energy Envelope"
Feeling a little less tired today despite my attempts to rest and "manage my energy" being foiled by the builders making a huge racket. Flu like feeling and dry, scratchy red eyes much improved today. So will try using the Wii again but otherwise a quiet day planned..
Feeling a little less tired today despite my attempts to rest and "manage my energy" being foiled by the builders making a huge racket. Flu like feeling and dry, scratchy red eyes much improved today. So will try using the Wii again but otherwise a quiet day planned..
Tuesday, January 12, 2010
New pacing regime for fibromyalgia
Not a great start, I fully intended to have a rest yesterday early afternoon but the the Wii fit & sports arrived so I just had to set it up nd then set up my profile and did the first assesment which reckoned I am two years older in Wii age than my real age..then I had to organise an online Asda shop and that was any chance of a rest out the window.
The result today?? Slept past the alarm which is usually a sign of a bad day to comme. I have full on brain fog, am eye-crossingly tired and every time I move my head I get lightening pains frm my crunchy neck up into my head.
So, off for 100% rest right now to see if that helps....
The result today?? Slept past the alarm which is usually a sign of a bad day to comme. I have full on brain fog, am eye-crossingly tired and every time I move my head I get lightening pains frm my crunchy neck up into my head.
So, off for 100% rest right now to see if that helps....
Monday, January 11, 2010
New Year new approach to pacing myself
I hope to avoid the cycle of feel good one day, do too much and crash for the rest of the week that I have been prone to.
I aim to follow the "manage your energy envelope" advice and get at least two proper rests a day which involves proper rest ie doing nothing, no TV, radio or reading for at least 15 minutes.
There is a Wii on its way so I hope to be able to also get back some muscle tone, I have tried walking, going to the gym etc but all have worsened my fbromyalgia symptoms, just getting to the gym with a kt bag proved too much!
I really also want to be less of a hermit but social activity is just so draining that that may take longer to achieve.
Updates to follow..
I aim to follow the "manage your energy envelope" advice and get at least two proper rests a day which involves proper rest ie doing nothing, no TV, radio or reading for at least 15 minutes.
There is a Wii on its way so I hope to be able to also get back some muscle tone, I have tried walking, going to the gym etc but all have worsened my fbromyalgia symptoms, just getting to the gym with a kt bag proved too much!
I really also want to be less of a hermit but social activity is just so draining that that may take longer to achieve.
Updates to follow..
diagnosis of fibromyalgia
Still in the dark ages I guess...
http://www.ncbi.nlm.nih.gov/pubmed/19962492?dopt=AbstractPlus
Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.
Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA. dgoldenb@massmed.org
Fibromyalgia is a chronic functional illness that presents with widespread musculoskeletal pain as well as a constellation of symptoms including fatigue, cognitive dysfunction, sleep difficulties, stiffness, anxiety, and depressed mood. The diagnosis of fibromyalgia, similar to other functional disorders, requires that organic diseases are not causing the symptoms. Systemic and rheumatic diseases can be ruled out by a patient history, physical examination, and laboratory investigations. Because there are no specific laboratory tests for fibromyalgia, the 1990 American College of Rheumatology (ACR) classification criteria have been used in clinical settings; however, they are not ideal for individual patient diagnosis. Clinicians should be aware of limitations inherent in using tender points in the diagnosis of fibromyalgia. The multiple symptoms of fibromyalgia often overlap with those of related disorders and may further complicate the diagnosis. One of the most challenging diagnostic dilemmas that clinicians face is distinguishing fibromyalgia from other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine). Screening questions based on published criteria can be used as a first approach in diagnosing functional illnesses. Numerous studies report a higher prevalence of psychiatric disorders in patients with fibromyalgia. Therefore, a careful history and evaluation should be taken for the presence of primary mood disturbances. To date, there is no "gold standard" for diagnosing fibromyalgia. Until a better clinical case definition of fibromyalgia exists, all diagnostic criteria should be interpreted with caution, considered rudimentary, and subject to modification. (c) 2009 Elsevier Inc.
PMID: 19962492 [PubMed - in process]
http://www.ncbi.nlm.nih.gov/pubmed/19962492?dopt=AbstractPlus
Diagnosis and differential diagnosis of fibromyalgia.
Goldenberg DL.
Department of Rheumatology, Newton-Wellesley Hospital, Newton, Massachusetts 02462, USA. dgoldenb@massmed.org
Fibromyalgia is a chronic functional illness that presents with widespread musculoskeletal pain as well as a constellation of symptoms including fatigue, cognitive dysfunction, sleep difficulties, stiffness, anxiety, and depressed mood. The diagnosis of fibromyalgia, similar to other functional disorders, requires that organic diseases are not causing the symptoms. Systemic and rheumatic diseases can be ruled out by a patient history, physical examination, and laboratory investigations. Because there are no specific laboratory tests for fibromyalgia, the 1990 American College of Rheumatology (ACR) classification criteria have been used in clinical settings; however, they are not ideal for individual patient diagnosis. Clinicians should be aware of limitations inherent in using tender points in the diagnosis of fibromyalgia. The multiple symptoms of fibromyalgia often overlap with those of related disorders and may further complicate the diagnosis. One of the most challenging diagnostic dilemmas that clinicians face is distinguishing fibromyalgia from other central pain disorders (e.g., irritable bowel syndrome, chronic fatigue syndrome, migraine). Screening questions based on published criteria can be used as a first approach in diagnosing functional illnesses. Numerous studies report a higher prevalence of psychiatric disorders in patients with fibromyalgia. Therefore, a careful history and evaluation should be taken for the presence of primary mood disturbances. To date, there is no "gold standard" for diagnosing fibromyalgia. Until a better clinical case definition of fibromyalgia exists, all diagnostic criteria should be interpreted with caution, considered rudimentary, and subject to modification. (c) 2009 Elsevier Inc.
PMID: 19962492 [PubMed - in process]
Thursday, January 07, 2010
Official Statement from the Whittemore Peterson Institute Regarding UK Study
Official Statement from the Whittemore Peterson Institute Regarding UK Study
http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf
The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.
The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:
1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.
The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
http://www.wpinstitute.org/news/docs/WPI_Erlwein_010610.pdf
The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.
The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:
1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.
The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.
Wednesday, January 06, 2010
XMRV research update
010603: "The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.
Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K."
Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K."
Saturday, January 02, 2010
Response to the piece on NHS services for ME patients (The Argus, December 14
"Further to the piece on NHS services for ME patients (The Argus, December 14), in Sussex there are more than 6,000 adults and children affected by myalgic encephalopathy/ chronic fatigue syndrome, many of whom are virtually housebound.
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence has recently issued guidelines to the medical profession.
Most doctors these days recognise ME as a serious illness and do their best to treat and support patients.
However, the Primary Care Trusts of Sussex need to urgently provide funding to shore up and further develop the NHS Sussex-wide specialist service we help set up in 2005 and has dealt with more than 2,000 referrals. We can be reached on 01273 674828.
David Butler
trustee
Sussex ME/CFS Society
Robin Dene, Brighton"
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence has recently issued guidelines to the medical profession.
Most doctors these days recognise ME as a serious illness and do their best to treat and support patients.
However, the Primary Care Trusts of Sussex need to urgently provide funding to shore up and further develop the NHS Sussex-wide specialist service we help set up in 2005 and has dealt with more than 2,000 referrals. We can be reached on 01273 674828.
David Butler
trustee
Sussex ME/CFS Society
Robin Dene, Brighton"
ME treatment needs to improve
I should say so having had my last 20 years blighted by this illness with no proper diagnosis or integrated treatment whatsoever.
"By Siobhan Ryan »
It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.
The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.
This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.
But things have now changed significantly for the better.
ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.
But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.
The group has recently published an interim report on its inquiry into the NHS services available.
Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.
“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.
“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”"
"By Siobhan Ryan »
It was once dismissed as nothing more than “yuppie flu” but over the years a greater understanding about the debilitating effects of ME has emerged.
The lives of many patients were left devastated by the disease as they struggled to cope with a whole range of symptoms ranging from extreme tiredness and lethargy to consistent pain and dizziness.
This was all up against a lack of knowledge and recognition from the medical profession and the general assumption that people should just “pull themselves together”.
But things have now changed significantly for the better.
ME is now recognised as a specific medical condition and NHS services specifically aimed at supporting and treating patients are now emerging across the country.
But according to the All-Party Parliamentary Group (APPG), chaired by Brighton Kemptown MP Des Turner, there is still plenty that needs to be done.
The group has recently published an interim report on its inquiry into the NHS services available.
Dr Turner said: “Currently, services offered to patients with ME or chronic fatigue syndrome (CFS) are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard.
“This is confounded by delays in diagnosis and failings on the part of GPs to recognise the disease or diagnose it.
“We found unacceptable variation in provision between different health trusts, which needs to be addressed.”"
Wednesday, November 25, 2009
Current concerns
For the first time since my entire digestive tract was inflamed top to bottom my weight has dropped to under 9 stone (around 57kg) despite my gastric symptoms being ok for me...
( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)
I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum
( IBS plays up now and then with pain and diarrhea alternting with rabbit dropping constipation, but not hing like it was before I cut out dairy - vomiting every day or food passing through in just a few hours...)
I do have a chronic cough and frequent sweats plus the usual overwhelming fatigue, migraines etc etc so off for a chest x-ray first then god knows what the GP will do next..ho hum
C.F.S. Q&A
Worth a read...
Times Delivers E-Mail - Sign Up:
"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?
Skeptic
A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."
Times Delivers E-Mail - Sign Up:
"When Chronic Fatigue Syndrome Goes Undiagnosed
Q.Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?
Skeptic
A.Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear."
Monday, November 16, 2009
More evidence of inflammation in (ME)CFS
Margaret Williams 14th November 2009
http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-
In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder
( http://www.unifobhelse.no/upload/Bergen%20What%20is%20CFS%202009.pdf ).
White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.
Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.
"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.
"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.
"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.
"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell
function".
Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?
http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-
In his presentation in Bergen on 20th November 2009, Professor Peter White's
power point slides state about (ME)CFS that maintaining factors include
illness beliefs, the search for legitimacy, being on benefits, and the
diagnostic label, and that immune or viral measures are NOT involved in the
maintenance of the disorder
( http://www.unifobhelse.no/upload/Bergen%20What%20is%20CFS%202009.pdf ).
White's assertion that immune or viral measures are not involved in the
maintenance of the disorder would seem to be a direct denial of the evidence
of two of the world's leading immunologists who specialise in ME/CFS,
Professors Mary Ann Fletcher and Nancy Klimas, who recently published yet
more confirmatory evidence of immune dysfunction in the maintenance of the
disorder (Journal of Translational Medicine 2009:7:96:
doi:10.1186/1479-5876-7-96). Their peer reviewed article was published
immediately upon acceptance.
Fletcher and Klimas et al are clear that cytokine abnormalities are common
in (ME)CFS and that the cytokine changes observed are more likely to be
indicative of immune activation and inflammation, rather than specific for
(ME)CFS, as people with fibromyalgia, Gulf War Illness, rheumatological
disorders and multiple sclerosis may also have similar cytokine patterns.
...."The elevations in LTa, IL-1a, IL1b and IL-6 indicate inflammation, likely
to be accompanied by autoantibody production, inappropriate fatigue, myalgia
and arthralgia, as well as changes in mood and sleep patterns.
"This study is among the first in the (ME)CFS literature to report the
plasma profiles of a reasonably large panel of cytokines assessed
simultaneously by multiplex technique.
"Cytokine abnormalities appear to be common in (ME)CFS. The changes from the
normal position indicate immune activation and inflammation.
"The results imply a disorganised regulatory pattern of TH1 function,
critical to antiviral defence.
"The results from this study support a TH2 shift, pro-inflammatory cytokine
up-regulation and down-regulation of important mediators of cytotoxic cell
function".
Since it is now unequivocal that people with (ME)CFS show markers of
inflammation, what will be the impact on the Wessely School's MRC PACE Trial
that is predicated on the assumptions of deconditioning, on the "perception"
of effort and on aberrant illness beliefs and whose participants are
instructed about "sleep hygiene"?
Sunday, November 15, 2009
Chronic fatigue syndrome: neurological, psychological or both?
Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London Medical School
A long read but well worth it
THE BRITISH NEUROPSYCHIATRY ASSOCIATION
http://www.bnpa.org.uk
http://bnpa.org.uk/doc/HANDBOOK.pdf
Neurology and Psychiatry SpRs Teaching Weekend
12 to 14 December 2008 St Anne's College - Oxford
THE ESSENTIALS OF NEUROPSYCHIATRY
Presentations:
[...]
09:50 Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".
During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:
"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."
See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:
Prof Peter White discouraging RSM Conference from using ICD-10:
http://tinyurl.com/PDW-RSM-ICD-10
In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:
http://www.ncbi.nlm.nih.gov/pubmed/19366500
Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary
care"
In the section "Implications for Further Research" the authors state that
because the paper finds that:
"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"
----------------
http://bnpa.org.uk/doc/HANDBOOK.pdf
Extract: presentation given at Neurology and Psychiatry SpRs Teaching
Weekend
Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
Epidemiology of fatigue and CFS
Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.
At the same time, fatigue is continuously distributed within the community,
with no point of rarity.
Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.
Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.
There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.
The diagnosis and classification of CFS
The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health
(F48).
[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]
Peter White, Professor of Psychological Medicine, Barts and the London Medical School
A long read but well worth it
THE BRITISH NEUROPSYCHIATRY ASSOCIATION
http://www.bnpa.org.uk
http://bnpa.org.uk/doc/HANDBOOK.pdf
Neurology and Psychiatry SpRs Teaching Weekend
12 to 14 December 2008 St Anne's College - Oxford
THE ESSENTIALS OF NEUROPSYCHIATRY
Presentations:
[...]
09:50 Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
The extract I am appending is a summary of Professor Peter Denton White's
presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS
"being a mess".
During his Royal Society of Medicine "CFS" Conference presentation, in
April 2008, White had said, ominously:
"...So ICD-10 is not helpful and I would not suggest, as clinicians, you
use ICD-10 criteria. They really need sorting out; and they will be in due
course, God willing."
See unofficial transcript of part of White's RSM presentation, here, in
which he presents his thoughts on current ICD taxonomy:
Prof Peter White discouraging RSM Conference from using ICD-10:
http://tinyurl.com/PDW-RSM-ICD-10
In an April 2009 paper, co-authored by White, the authors propose a change
to current ICD-10 codings:
http://www.ncbi.nlm.nih.gov/pubmed/19366500
Psychological Medicine Preprint "Risk markers for both chronic fatigue and
irritable bowel syndromes: a prospective case-control study of primary
care"
In the section "Implications for Further Research" the authors state that
because the paper finds that:
"These data also suggest that fatigue syndromes are heterogeneous
(Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered
as separate conditions, with CFS/ME having more in common with IBS than
PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10
taxonomy, which classifies PVFS with ME (WHO, 1992)"
----------------
http://bnpa.org.uk/doc/HANDBOOK.pdf
Extract: presentation given at Neurology and Psychiatry SpRs Teaching
Weekend
Chronic fatigue syndrome: neurological, psychological or both?
Peter White, Professor of Psychological Medicine, Barts and the London
Medical School
Epidemiology of fatigue and CFS
Fatigue is a common symptom in both the community and primary care. When
asked, between 10 and 20 per cent of people in the community will report
feeling abnormally tired at any one time.
At the same time, fatigue is continuously distributed within the community,
with no point of rarity.
Therefore any cut-off is arbitrary and the prevalence will vary by how the
question is asked, the symptom volunteered, and its context. Between 1.5 %
and 6.5 % of European patients will consult their general practitioner with
a primary complaint of fatigue every year, the incidence varying by age and
population. Fatigue is more commonly reported and presented to general
practitioners by women and the middle-aged, and is most closely associated
with mood disorders and reported stress. It does not seem to vary by
ethnicity in the UK, but there is an intriguing paradox in that it is
reported more commonly by those in high income countries, yet is presented
to medical care more often in low income countries.
Prolonged or chronic fatigue is significantly less common than the symptom
of fatigue and it is only in the last 10 years that consensus has emerged
about the existence of a chronic fatigue syndrome (CFS), also called
myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by
medical authorities in the UK, in the United States of America, as well as
internationally. About one third of patients presenting to their doctor
with six months of fatigue will meet criteria for a chronic fatigue
syndrome. The other two thirds have fatigue secondary to another condition,
most commonly mood and primary sleep disorders. Its primary symptom is
fatigue, both physical and mental, which particularly follows exertion.
Other symptoms agreed in consensual guidelines include poor concentration
and memory, sleep disturbance, headache, sore throat, tender lymph glands,
muscle and joint pain.
There are several criterion based definitions of CFS. These definitions
were derived by consensus and have not been supported by empirical studies,
and continue to be refined. Their utility stems from providing reliable
criteria for research studies, rather than clinical use. The prevalence of
CFS is between 2.5 % and 0.4 % depending on the definition used and whether
comorbid mood disorders are excluded (that is mood disorders that are not
thought to be the primary diagnoses). It is most common in women, the
middle-aged, and ethnic minorities (unlike fatigue) - at least in English
speaking countries.
The diagnosis and classification of CFS
The clinical taxonomy for CFS is a mess. The ICD-10 classification defines
CFS within both the neurology chapter and mental health chapters. Myalgic
encephalomyelitis, the alternative name for CFS, is classified as a
neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia
(a.k.a. CFS not otherwise specified) is classified within mental health
(F48).
[Ed: Note that White does not mention, here, that Chronic fatigue syndrome
is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same
coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue
syndrome (ICD-10: Volume 1: The Tabular List).]
Friday, November 13, 2009
comments on meeting of the Chronic Fatigue Syndrome Advisory Committee
One patient wrote to me recently describing her immense relief: she had been afraid she would die without ever finding out what was wrong with her.
I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.
http://oslersweb.com/blog.htm?post=646449
I imagine many thousands—maybe hundreds of thousands of others—who fell ill in the epidemic years of the 1980s, felt the same. I know I did. The question was never whether we were ill with one of the worst diseases imaginable—it was whether we could ever learn the answer to the great mystery, the actual cause, the pathogen, before we dropped dead of it. And now it has been clarified: twenty-five years of retroviral infection, untreated, ignored, laughed at, allowed to wreak havoc, allowed to spread until penetration in the general population may have reached four percent—give or take.
http://oslersweb.com/blog.htm?post=646449
XMRV TESTING VIP Dx
VIP Dx: "LATEST NEWS: XMRV TESTING
Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
TO ORDER XAND TEST KITS, CONTACT VIP Dx.
To learn more about our XMRV tests, CLICK HERE."
Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of “Science”, is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, 'Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome', please go to (www.sciencemag.org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).
TO ORDER XAND TEST KITS, CONTACT VIP Dx.
To learn more about our XMRV tests, CLICK HERE."
EXERCISE THERAPY/PSYCHOTHERAPY HARMFUL INEFFECTIVE,
http://www.ediver.be/ediver/latest%20news/PRESS%20RELEASE%20CBT%20and%20GET%
20in%20ME%20CFS.pdf
PRESS RELEASE
EXERCISE THERAPY/PSYCHOTHERAPY NOT ONLY INEFFECTIVE,
BUT ALSO POTENTIALLY HARMFUL FOR MANY PATIENTS WITH ME/CFS
A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.
Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.
ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
obstructive
pulmonary disease.
There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
studies,
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.
Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.
A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
very
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!
The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
(e.g.
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.
The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.
References:
Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
evidencebased,
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.
Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
Information:
Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775
frank.twisk@hetnet.nl
www.michaelmaes.com (here you can download the full text)
20in%20ME%20CFS.pdf
PRESS RELEASE
EXERCISE THERAPY/PSYCHOTHERAPY NOT ONLY INEFFECTIVE,
BUT ALSO POTENTIALLY HARMFUL FOR MANY PATIENTS WITH ME/CFS
A recent review of the relevant scientific literature shows that the
"revalidation therapies" for patients with ME/CFS, which are monopolized by
the governmental institutions for example in the UK, Belgium and the
Netherlands, are not only not efficient, but also aggravate the condition of
many patients.
Antwerp (Belgium); Limmen (the Netherlands), October 27th, 2009.
ME/CFS is a debilitating disease, affecting many biological systems.
According to the CDC, the level of impairment of ME/CFS patients is often
comparable to that of patients with some well-known, very severe medical
conditions, such as MS, AIDS, end-stage renal failure, and chronic
obstructive
pulmonary disease.
There is now sufficient evidence that ME/CFS is a disorder that
primarily involves an inflammation with dysregulated and suppressed
immune functions, oxidative stress, infections, autoimmunity and
mitochondrial dysfunction. During the last few years, many scientific
studies,
including gene expression research, have confirmed that patients with
ME/CFS suffer from the above organic disorders.
Despite several major scientific breakthroughs, ME/CFS is still
described in the popular media as a medically unexplained disorder.
Psychotherapy (cognitive behavioral therapy) and graded exercise therapy
(GET) are declared to be the only possible therapies.
A thorough analysis of the current medical scientific literature and
international patient surveys, however, shows that CBT/GET is not only
ineffective for the majority of the ME/CFS patients, but also potentially
very
harmful. Scientific studies and large-scaled patient surveys have shown that
treatments with CBT/GET seriously deteriorate the condition of many patients
with ME/CFS. The work capacity decreased as well!
The review also explains why GET and exercise do aggravate
characteristic complaints, like “fatigue”, pain, neurocognitive problems
(e.g.
concentration and memory). Pre-existing biological aberrations, e.g.
inflammation, oxidative stress, and dysfunctional ion channels, will be
amplified by a minor exertion, like walking or reading a book … and by
“rehabilitation therapies” like CBT/GET.
The reviewers urge policy makers to change their policies drastically,
by putting a stop to potentially harmful and ineffective "rehabilitation"
programs, and investing into medical research and therapies targeted at the
immune system, infections and other pathological aspects of this horrible
/wasting disease.
References:
Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
evidencebased,
but also potentially harmful for many patients with ME/CFS. Neuro
Endocrinol Lett. 2009 Aug 26;30(3):284-299.
Maes M, Twisk FNM. Chronic fatigue syndrome: la bête noire of the Belgian
health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
Information:
Frank Twisk MBA BEd BEc
Stichting ME-de-patiënten / ME-de-patiënten Foundation
Zonnedauw 15
1906 HB Limmen
Nederland / the Netherlands
Tel. +31-(0)72-505 4775
frank.twisk@hetnet.nl
www.michaelmaes.com (here you can download the full text)
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