Occupy CFS: My Feedback to IoM

justinreilly

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occupycfs.com/2013/12/19/my-feedback-to-the-institute-of-medicine/#comments

My Feedback to the Institute of Medicine

By Jennie Spotila
December 19, 2013

Today, I submitted the following letter to the Institute of Medicine with my feedback on the panel for the Diagnostic Criteria for ME/CFS. Seven other advocates signed the letter: Chris Heppner, Claudia Goodell, Joe Landson, Denise Lopez-Majano, Matina Nicholson, Darlene Prestwich, and Tamara Staples.

Thank you for this opportunity to provide feedback on the Institute of Medicine’s provisional committee appointments for the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. In order to understand the significance of my concerns, I believe you must first understand the damaging legacy of the psychogenic view of ME/CFS. Then I will share my specific feedback about the panel’s composition.

Legacy of Psychogenic Explanations for ME/CFS

For more than thirty years, the psychogenic model dominated the medical mainstream view of ME/CFS. Patients were labeled malingerers with “yuppie flu.” Allegedly, they could not cope with stress, indulged their psychosomatic symptoms, received secondary gain from disability, and simply needed to get therapy and more exercise. I have never met an ME/CFS patient who did not receive this message from at least one doctor.

Through the 1990’s, science seemed to confirm this model. Every investigation for a causative infectious agent failed. Contradictory results prevented the validation of diagnostic biomarkers. And psychologists published data showing that cognitive behavioral therapy and graded exercise therapy produced positive outcomes.

But ME/CFS patients, expert clinicians, and some researchers knew that the data were flawed. Mixed patient cohorts likely contributed to many of the contradictory results. Many of us followed the advice of well-meaning healthcare providers and tried to exercise ourselves out of disease. This therapy was not a treatment, and adverse side effects included relapse, exacerbation of the disease, and increased disability.

Science soon emerged to confirm what we knew empirically. Studies showed that ME/CFS patients have different physiological responses to activity as compared to multiple control groups.(1) Many body systems are implicated in the causation and perpetuation of ME/CFS. Field-testing of multiple case definitions measured what we already knew to be true: that some case definitions incorporated people with primary psychological conditions like depression, along with missed cases of multiple sclerosis, lupus, thyroid disease and primary sleep disorders. (2) Given the ample data showing physiological differences between ME/CFS patients and patients with depression and other illnesses, the inclusion of subjects with primary depression in CBT and GET trials is a fatal flaw in study design.

The psychogenic model of ME/CFS should have faded into obscurity by now. But it persists in open supporters of the hypothesis, and in less overtly expressed attitudes among scientists, doctors, and policy makers. Our long experience with the destructive effects of psychogenic pronouncements has taught us to be wary of these unseen and unvoiced assumptions.

Insufficient Representation of Subject Matter Experts

I acknowledge the selection of seven well-known and well-regarded ME/CFS experts to the panel. I am confident in their individual and collective abilities to examine the data and share their experience with the full group. However, given the nature of the panel’s task, I believe that more ME/CFS experts should be added to the panel.

In creating “evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians,” the panel needs both fresh examination of the data by outsiders and consideration of the collective experiential knowledge of those who know this disease. Research and clinical care in ME/CFS has typically been small-scale and distributed widely among the people doing this work. Only when a critical mass of experts combines their knowledge, such as at the NIH ME/CFS State of the Knowledge Workshop in 2011, do the disparate themes come together in a cohesive picture.

My concern is not a numbers game with the goal of reaching a certain percentage of representation. The panel is missing key expertise:

  • First, the absence of a cardiologist is notable. While Drs. Keller, Lerner and Rowe have relevant experience, dysautonomia is too prevalent in ME/CFS for it to be only marginally addressed. Adding a panelist with expertise in postural orthostatic tachycardia syndrome, vasovagal syncope, and/or neurally mediated hypotension is appropriate. I suggest Julian M. Stewart, M.D., Ph.D. or Marvin S. Medow, Ph.D., both at the Center for Hypotension, New York Medical College.
  • Second, there is only one infectious disease specialist on the panel. This is a significant gap in expertise, given the unsuccessful hunt for a causal pathogen in a disease that has all the hallmarks of an infectious trigger. Dr. Martin Lerner is capable, but I suggest adding at least one more infectious disease specialist. Ian Lipkin, M.D., is Director of the Center for Infection and Immunity at Columbia University. An epidemiologist by training, Dr. Lipkin is known for detection of new pathogens and the role of infection in neurologic diseases. He also has experience in ME/CFS-related research. Another candidate to consider is Jose G. Montoya, M.D., Director of the Stanford ME/CFS Initiative and Professor of Medicine in Infectious Disease at Stanford University Medical Center. Dr. Montoya is a clinician-researcher in ME/CFS and also studies the role of infection in chronic disease.
  • Third, as the FDA recognized in their Voice of the Patient report, cognitive problems are a prominent part of ME/CFS. Gudrun Lange, Ph.D. of Beth Israel Medical Center is an expert in cognitive dysfunction in ME/CFS, and would be a strong addition to the panel.
Finally, the absence of psychologist Leonard Jason, Ph.D. from the panel is very troubling. As I am certain you are aware, Dr. Jason has done more work on field-testing ME/CFS case definitions than any other individual. His publications have demonstrated the inadequacies of the Fukuda and Oxford definitions, the correlation between more symptoms and psychopathology in the ME-ICC definition, and have shown that measuring frequency and severity of symptoms distinguishes patients with ME/CFS from those with fatigue alone. (3)

I recognize that one or more of the individuals I am recommending may be unwilling or unable to serve on the IOM panel. I urge you to harness their expertise in other ways. This is particularly true for Dr. Jason. If he cannot serve on the panel, I believe it is essential that he be invited to present to the committee and that his work be a significant part of the panel’s deliberations.

Investigating Bias in Three Panel Members

I believe that three members of the provisional panel may have bias that would preclude their service on the committee. I understand that the IOM’s Conflict of Interest policy bars individuals with bias from panels only when “unwilling, or reasonably perceived to be unwilling, to consider other perspectives or relevant evidence to the contrary.” (IOM Conflict of Interest Policy, p. 4). I also acknowledge the difficulty of assessing bias at a distance. Therefore, I request that IOM discuss and thoroughly consider the potential biases of these three panelists.

First, Dr. Margarita Alegria co-authored a paper on the prevalence and comorbidity of neurasthenia.(4) While this paper did not directly examine the potential overlap between ME/CFS and neurasthenia, I am troubled by the statements on page 1742 that CFS is “a controversial illness which has been argued to be a variant of neurasthenia,” and that individuals “may present with symptoms of neurasthenia, but may otherwise be misdiagnosed as having depression, anxiety, or CFS.” If Dr. Alegria believes that ME/CFS is actually a psychological condition such as neurasthenia, then her presence on the panel is unacceptable. I urge IOM to establish whether Dr. Alegria has such a bias, and remove her from the panel if she does.

Second, Dr. Theodore Ganiats has close ties to the American Academy of Family Practitioners. The AAFP has published inaccurate and incomplete material about ME/CFS as recently as 2012. (5) In fact, the AAFP’s material on CFS illustrates the outdated and incorrect view of ME/CFS that I discussed above, including the claim that childhood trauma raises the risk of the disease and that CBT and GET are effective treatments. (6) Furthermore, one of Dr. Ganiats’s close colleagues, Dr. William Sieber, has given presentations in which he has stated that CFS is caused by psychological problems. (7) IOM should establish whether Dr. Ganiats shares this psychogenic bias and whether he can truly consider the evidence to the contrary.

Third, Dr. Cynthia Mulrow led the last systematic evidence review on chronic fatigue syndrome conducted by the Agency for Healthcare Research and Quality in 2001. Her report stated, “The validity of any definition is difficult to establish because there are no clear biologic markers for CFS, and no effective treatments specific only to CFS have been identified.” (8) If Dr. Mulrow still believes that this is the test for establishing the validity of a definition, then she is not appropriate for this panel. The lack of “clear” biomarkers and specific effective treatment is due to the paucity of research funding. Many promising biomarkers and treatments need only sufficient investment to establish their validity. Furthermore, Dr. Mulrow’s 2001 article on the treatments for CFS states that there was no significant association between case definition used and treatment study outcome. (9) We now know that some case definitions select patients with psychological problems at a higher rate than others, and this must be accounted for in the panel’s analysis. Absence of evidence is not evidence of absence, and everyone on the panel must realize this. Given Dr. Mulrow’s 2001 publications in support of CBT and GET, and the risk of her inability to fairly consider all the evidence, IOM should establish whether she has an entrenched bias.

Conclusion

I acknowledge that I was among the ME/CFS advocates who vigorously opposed the contract with IOM when it became public in September 2013. I remain skeptical of whether the committee’s report will lead to better diagnosis and treatment for all the people suffering from this debilitating disease.

I urge IOM to add more ME/CFS experts to the panel, such as Dr. Stewart, Dr. Medow, Dr. Lipkin, Dr. Montoya, Dr. Lange, and Dr. Jason. All of these scientists will contribute knowledge that is essential to the panel’s task. I further urge IOM to thoroughly investigate and establish whether Dr. Alegria, Dr. Ganiats, and Dr. Mulrow have biases that should disqualify them from service.

Sincerely, and on behalf of the undersigned,

Jennifer M. Spotila, J.D.
Writer, occupycfs.com

Chris Heppner, Ph.D.
Vice President ME Victoria, BC

Claudia Goodell, MS
Patient Advocate- Race to Solve CFS

Joseph D. Landson
ME/CFS Patient and U.S. Navy veteran

Denise Lopez-Majano
Speak Up About ME
Parent, caregiver, advocate

Matina Nicholson
Patient Advocate

Darlene Prestwich
Patient Advocate

Tamara C. Staples
Patient, 15 Years
Patient Advocate, 5 Years

References:

(1) Light, AR, Bateman L, Jo D, Hughen RW, VanHaitsma TA, White AT, & Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. Journal of Internal Medicine, (2011) 271(1), 64–81.

(2) Jason LA, Najar N, Porter N, & Reh C. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies, (2009) 20(2), 93–100.

(3) Jason LA, Sunnquist M, Brown A, Evans M, Vernon S, Furst J, Simonis V. Examining case definition criteria for chronic fatigue syndrome and myalgic encephalomyelitis. Fatigue: Biomedicine, Health & Behavior, Epub ahead of print, accessed Dec 11, 2013: http://www.tandfonline.com/doi/abs/10.1080/21641846.2013.862993?journalCode=rftg20&#.UrEQ0Y06Kw8

(4) Molina K, Chen C, Alegria M, Li H. Prevalence of neurasthenia, comorbidity, and association with impairment among a nationally representative sample of US adults. Soc Psychiatry Psychiatr Epidemiol (2012) 47:1733-1744.

(5) Yancey J & Thomas S. Chronic Fatigue Syndrome: Diagnosis and Treatment. Am Fam Physician. 2012 Oct 15: 86(8): 741-746.

(6) http://www.aafp.org/afp/2012/1015/p741-s1.html accessed December 16, 2013.

(7) Sieber, William. Calming the Anxious Brain, accessed December 16, 2013.http://www.innersolutionsforsuccess.com/PPT/CalmingAnxiousBrain_Oct_2013.pdf.

(8) Mulrow CD, Ramirez G, Cornell JE, et al. Defining and Managing Chronic Fatigue Syndrome. Evidence Report/Technology Assessment No. 42). AHRQ Publication No. 02-E001. Rockville (MD): Agency for Healthcare Research and Quality; October 2001.

(9) Whiting P, Bagnall AM, Sowden AJ, Cornell JE, Mulrow CD, Ramirez G. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA. 2001 Sep 19;286(11):1360-8.
 

justinreilly

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Regarding this excerpt:

"Dr. Margarita Alegria co-authored a paper on the prevalence and comorbidity of neurasthenia. While this paper did not directly examine the potential overlap between ME/CFS and neurasthenia, I am troubled by the statements on page 1742 that CFS is “a controversial illness which has been argued to be a variant of neurasthenia,” and that individuals “may present with symptoms of neurasthenia, but may otherwise be misdiagnosed as having depression, anxiety, or CFS.” If Dr. Alegria believes that ME/CFS is actually a psychological condition such as neurasthenia, then her presence on the panel is unacceptable. I urge IOM to establish whether Dr. Alegria has such a bias, and remove her from the panel if she does."
I commented:

Jennie,

You are saying this statement she co-authored in the Neurasthenia paper leaves doubt that she equates CFS with neurasthenia?

N.B. that she explicitly calls CFS a “neurasthenia spectrum disorder” and the cited paper calls CFS both a “neurasthenia spectrum disorder” and a “neurasthenia category.” (the cited paper’s hypothesis was that CFS might describe Idiopathic Chronic Fatigue in India)

“Likewise, further research is needed to examine the concordance of neurasthenia spectrum disorders (e.g., ICD-10 neurasthenia, CFS, CCMD-2 and CCMD-3 [these last two are the two Chinese Criteria] for neurasthenia) across non-clinical, population-based samples across cultural contexts [cf. 21, 23].”

http://forums.phoenixrising.me/inde...impairment-among-a-nationally-represen.27105/
 

justinreilly

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What Else Have We Missed?

I am now wondering what else is out there that we have missed! We have seen that while Jennie's group did a lot of hard work and must be thanked for that, they have also missed some obvious fatal flaws in at least one panelist. It not only is very unfair and extremely inefficient, but an impossible burden for disabled patients to uncover the biases, conflicts and incompetency of the panelists!

Regardless of IoM policy, it is simply unacceptable for prospective panelists not to list relevant biases or mention that they have published on the topic before. The burden should certainly be on them to disclose, since they already know if these problems exist and what they are, rather than on extremely disabled patients to have to do extensive research, almost all of which is simply impossible if one does't have free access to medical journals.
 
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Also on occupycfs.com, comment 4 by Anushka discusses issues with Jason:
http://www.occupycfs.com/2013/12/18/iom-panelists-tl-dr/#comments

Anyone know if our statements to IOM will be available to the public??

I want each voice to count. And for my own records and education, I want to know what's being said and how many people are saying it.

EDIT:
According to occupycfs.com (under Submitting Feedback), IOM may put some comments in the public file but not all.

-----------

Dear public,
Please send your comments on Ultra Plush three-ply.
We care,
your Government
 
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Ember

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Also on occupycfs.com, comment 4 by Anushka discusses issues with Jason:
http://www.occupycfs.com/2013/12/18/iom-panelists-tl-dr/#comment
I was surprised to see Jennie's team taking a swipe at the ME-ICC definition:
His publications have demonstrated the inadequacies of the Fukuda and Oxford definitions, the correlation between more symptoms and psychopathology in the ME-ICC definition, and have shown that measuring frequency and severity of symptoms distinguishes patients with ME/CFS from those with fatigue alone. (3)
 

Ember

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We weren't trying to swipe at the ME-ICC. We were quoting Lenny Jason's research, which is referenced in that footnote.
Have you considered the content of the study that you were describing and referencing, Jennie? Did you follow up on Anushka's invitation to “have a look what [Dr. Jason] plans to do with the ME ICC and why?” Have you read the discussion here?

You were taking a swipe at the ME-ICC whether or not that was what you were trying to do.
 
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I don't understand this, but I think it's funny. :thumbsup:
Well, it was transcribed in a moment of frustration, and I see it might have been more clear as "...send your comments (written) on Ultra Plush three-ply..." for the benefit of the upper food chain...

I superficially searched for the most "luxury"-esque descriptor of toilet paper, hence "Ultra Plush" and "three-ply" (which is of course disturbing in and of itself) ...

Anyway, it was (attempted) humor as a means of coping... :)

Edit: And I've been isolated, so my "learned niceties" may be faltering of late...
 
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Nielk

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Here is mine -

Please find below, my comments on the provisional panel selection by IOM, to evaluate evidence based clinical criteria for the disease now called Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS).


I am writing to request that the non-ME/CFS experts be removed from the panel and replaced with additional ME/CFS experts.


I would like to preface my comments with the statement that I and thousands of patients and advocates are against this study contracted by the HHS. I would like to explain this statement which, if taken out of context might seem to you as being unreasonable and unappreciative.


The reality is that this disease has been neglected by HHS and its agencies since it was first coined as Chronic Fatigue Syndrome almost thirty years ago by the CDC. This was followed by the Oxford and Fukuda Criteria which made it seem like this disease was a vague feeling of tiredness and discomfort, most probably caused by deconditioning, which should be treated with cognitive behavioral therapy and graded exercise. As a matter of fact, this outdated, harmful to patient information still appears in the treatment section on the CDC website.


The true complexity and seriousness of this disease, which afflicts approximately 900,000 patients in the U.S., has been kept in the dark. The job of minimizing and marginalizing this disease was so successful that when two documentaries[1] recently produced trailers about what ME/CFS actually is and how it affects its patients, it took audiences by great surprise. I had people contact me telling me that they had no idea that this was such a serious disease and the impact it has on the quality of life of its patients. This disease actually renders a quarter of the patients totally bedbound! Most, like me, are housebound, in pain and unable to work. When we crash, we can be bedbound for weeks on end. I had to give up my job at work and put a halt on tending to my family ten years ago. Since then, I have had to rely on them to care for me.


More and more clinicians and researchers worldwide have started to show an interest in this disease and its patients…..despite the neglect by HHS. The NIH has consistently failed to provide enough funding for serious medical research. As recently as this year, Dr. Ian Lipkin, who is world renowned as the ‘virus hunter’ at Columbia University Hospital in New York, announced at a public conference that the NIH has denied his request for funding to continue his research on finding pathogens for ME/CFS. To put it into perspective; NIH funding for ME/CFS is at 5 million dollars a year compared to Multiple Sclerosis which is at 115 and Lupus at 108. [2]


Interest in the disease has been growing worldwide by clinicians and researchers who have come to understand the serious impact to patients, the complexities and the many aspects of the disease. Many of them signed the ‘letter of experts’ [3] to the HHS urging HHS to cancel this contract with the IOM. They further urged HHS to immediately adopt the Canadian Clinical Criteria that HHS has defiantly refused to accept. It is not that they or the patients don’t respect the Institute of Medicine. The IOM does a tremendous job in the many studies that they produce. We believe that the IOM is not the appropriate venue for this specific study for the following reasons:


· The IOM does not have previous experience producing clinical criteria for a disease.


· The method of study and the panel makeup/balance of IOM’s studies are not appropriate for studying this particular disease.


· We already have two clinical criteria; the Canadian Consensus Criteria of 2003 and the International Consensus Criteria of 2011. HHS has not satisfactorily explained why they refuse to adopt either of these two definitions.


I and thousands of other patients believe that only a panel of members with experience and knowledge about the disease is appropriate for this study. Unlike most other diseases, ME/CFS is not taught in medical schools. Provisional members to the panel who have had no firsthand experience working with and/or researching the disease will only be a hindrance to the success and final outcome of the study.


IoM states that there is a need for diversity on their panels. I believe that this can be accomplished with ME/CFS knowledgeable clinicians. Since at the moment there is no such specialty as ME/CFS, the clinicians from all diverse specialties currently treat and/or study ME/CFS patients. This is unlike a specialty like Cardiology for example where all the clinicians taking care of cardiac patients are cardiologists. There are enough clinicians from many sub-specialties within the ME/CFS experts to choose from. This is shown by the current slated ‘experienced’ members:


Dr. Lucinda Bateman – General Internal Medicine

Dr. Lily Chu – Internal Medicine and Geriatrics

Dr. Ronald Davis – Genomic Researcher

Dr. Betsy Keller – PhD in Exercise Science

Dr. Nancy Klimas – Immunologist

Dr. Martin Lerner – Infectious Disease Specialist

Dr. Benjamin Natelson – Neurologist

Dr. Peter Rowe – Professor of Pediatrics



Moreover, the current panel members selected who have no ME/CFS experience would have too much of a learning curve in order to properly and professionally deliberate on a complex disease in the short timeframe of five meetings.


There is precedence for diseases that are defined by ‘expert’ panels. In 2009, the National Institute of Aging and the Alzheimer’s Association held a series of advisory roundtable meetings in order to revise the 1984 Alzheimer’s Diagnostic Criteria. [4] This new set of criteria was achieved by experts in the field. The current version of the Beighton Criteria for Ehler’s-Dalos Syndrome (EDS), joint hypermobility type was written by five EDS geneticists. [5]


For all the reasons stated above, I am requesting that the non-ME/CFS experts be removed from the panel and replaced with additional ME/CFS experts.


Thank you for this opportunity for me to comment.


Gabby Klein





[1] The Blue Ribbon Documentary by Ryan Prior - http://phoenixrising.me/archives/17547


Canary in a Coalmine Documentary by Jennifer Brea - http://phoenixrising.me/archives/20117



[2] NIH: Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) http://1.usa.gov/JQdATa


[3] An Open letter to the Honorable Kathleen Sebelius, U.S. Secretary of health and Human Services –

Original dated Sept. 23 2013. Updated on Oct. 25, 2013. http://bit.ly/1i8cAIb


[4]Introduction to the recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease.

Jack CR Jr, Albert MS, Knopman DS, McKhann GM, Sperling RA, Carrillo MC, Thies B, Phelps CH.

Alzheimers Dement. 2011 May;7(3):257-62. doi: 10.1016/j.jalz.2011.03.004. Epub 2011 Apr 21.


[5] Levy HP. Ehlers-Danlos Syndrome, Hypermobility Type. 2004 Oct 22 [Updated 2012 Sep 13]. In: Pagon RA, Adam MP, Bird TD, et al., editors. GeneReviews™ [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2013.Available from:http://www.ncbi.nlm.nih.gov/books/NBK1279/
Thank you for your help - J. spotila and J. Wiley
 

taniaaust1

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Unfortunately after one sends the letter, there is no way to copy it. I sent two letters and wish I'd kept copies. In my letters I said that I didnt see the balance being good at all as the non experts in the time they have will never be able to understand this disease as it takes years.. so far more experts then non experts are needed on the panel.

I also asked for the one who has done studies in neurasthenia be removed.. as I see someone in that field on the panel as being quite offensive to us and she is quite likey to hold baised views.

My second email to them said that I thought Leonard Jason should be the pscychologist on the panel due to his experience in the field and in forming definitions.
 

justinreilly

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Here is my letter in PDF form. It is long and has footnotes so thought PDF better.

I suggest that anyone who has not yet written in simply endorse a letter or letters that they like, such as mine or Gabby's, if there is one you agree with. You can also of course say you endorse a letter with deletions (made clear by blacklining) or additions if you wish. This will save some precious energy.

Of course, if you don't agree with our letters, pls send in your own if you think 'engagement' is appropriate.

Anyone else who writes a letter, again, please post it here so others can get ideas or simply endorse your letter to the IoM.

Send to: mecfs@iom.edu
 

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Keela Too

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Below is a copy of my letter (also at http://sallyjustme.blogspot.co.uk/ ) I intend to send it shortly. I thought about endorsing several other letters at the end, but decided in the end to just mention Justin's letter re specifics on individual panelists.

The opportunity to comment on the Provisional Panel is appreciated.


ME, myalgic enchephalomyelitis, is one of the least socially acceptable illnesses to acquire in today’s world. This is in no short measure due to its association with the name Chronic Fatigue Syndrome (CFS).


At one point in time it might have been useful for researchers to look for similarities between various fatigues of unexplained origins, and to collect them together under the CFS umbrella. That time should now have passed.


I am an ME patient in Northern Ireland, and I am very concerned by what is happening in USA. It seems that ME can be defined by the Canadian Concensus Criteria (CCC) but for some reason, the Department of Health and Human Services (HHS) in USA has decided that this is not sufficient.


I understand that the HHS has contracted the Institute of Medicine (IOM) to redefine the illness CFS and along with it the illness known as ME. They have continued with this despite no less than 50 ME experts, 171 ME advocates, and over 3000 ME patients and supporters calling for this contract to be halted, and for the CCC to be adopted without further ado.


I understand that the feedback facility, I am using to submit this letter, is intended for feedback on the individuals selected for the IOM panel. However, I want it first to go on record that I think the IOM contract should be halted, the panel disbanded, and the CCC immediately adopted as the working definition for ME, and that any further changes to the CCC be made by experts working on the physiology of ME.


The IOM panel itself, appears to represent a broad spectrum of individuals, however it seems that not all are ME experts. Some seem to have a background that would suggest that they might favour a broad and sweeping definition for ME that might include individuals with other vaguely defined fatigues. Indeed there is a worry that some panel members might even favour a psychosomatic approach to this illness.


Therefore I would like to suggest that the IOM panel (if it must operate) should ONLY include individuals who have a clear understanding of the physiology of ME. Most especially, anyone who claims that ME can be helped by increased exercise, should be removed from the panel, because of their lack of understanding of the Post Exertional Malaise (PEM) that so disables ME patients world over.


If it is the intention of the HHS that the IOM panel should look at ALL medically unexplained fatigues lasting longer than six months, then I would urge that ME be removed from the IOM panel’s focus.


Finally I would like to draw your attention to the in depth response sent to you by Justin Reilly. I have read and fully endorse the points that he has made and in particular would like you to take note of his comments on individual panel members.


Thank you for taking time to consider my points.
 
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