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Do you want your name added to my letter in reply to IoM panel?

Nielk

Senior Member
Messages
6,970
Tomorrow - December 23rd is the deadline for feedback on the slated panel by the IoM. If you would like to send in your comment, you can do it here http://www8.nationalacademies.org/cp/FeedBack.aspx?key=49592&type=committee

If you would like to add your name to my comment, below, you can do so. Please let me know by tonight (Sunday night) and I will gladly add your name. You can let me know here, pm me, or e-mail me at gabby@phoenixrising.me

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 As a matter of fact, this outdated, harmful to patient information still appears in the treatment section on the CDC website.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/