(As CFSAC kicks off its abbreviated session in webinar form, Ken Friedman looks back at ten years of CFSAC and asks what it has accomplished. Ken Friedman’s own time on CFSAC in the early 2,000’s was highlighted by his dissenting report “Fish Or War’ which proposed and eventually set a new direction for the research subcommittee’s recommendations.
Ken Friedman P.hD is a Associate Professor of Pharmacology and Physiology at the New Jersey Medical School. He has played significant roles in many ME/CFS groups including the IACFS/ME, P.A.N.D.O.R.A, the New Jersey Chronic Fatigue Syndrome Association and the CFS Knowledge Center. His daughter became ill with ME/CFS/FM in the 1990’s. Find out more about Ken Friedman here. )
“I do not think that the lack of response from the U.S. Secretary of Health disillusioned any member of the committee. I think anger, resentment, and confusion would be more accurate descriptions of our feelings.” Ken Friedman – Interview with Cort Johnson
According to an online Federal Register article dated April 30thth, 2013, the Federal Advisory Committee for Chronic Fatigue Syndrome or CFSAC was formed on September 5, 2002. A cursory review of my records, and my recollection as a member of the then newly constituted Advisory Committee, suggest that we first met in the Fall of 2003. Whichever date you select as the inception date of the Committee, it is clear that this Advisory Committee is at, or has passed, its 10 anniversary; an occasion which should serve as a time of reflection and evaluation.
CFSAC was established on September 5, 2002 to advise, consult with, and make recommendations to the Secretary through the Assistant Secretary for Health, on a broad range of topics Federal Registry Notice
According to the April, 2013 Federal Register article, the Advisory Committee was formed to advise, consult with, and make recommendations to the U.S. Secretary for Health, through the Assistant Secretary. In 2003, the newly formed Committee was told that its sole purpose was to make recommendations. Requests to meet, or consult, with the Secretary of Health in those early years were denied.
The Federal Register article is correct in identifying the areas that should be of current concern to the Advisory Committee. Topics include:
- The current state of knowledge and research, and the relevant gaps in knowledge and research including epidemiology, etiologies, biomarkers, and risk factors relating to CFS, identifying potential opportunities [for advances] in these areas
- the impact and implications of current and proposed diagnosis and treatment methods for CFS;
- the development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and last but certainly not least (4) partnering to improve the quality of life of CFS patients.
It is disappointing to me that in the four years that I served on this Advisory Committee, I and my fellow Committee members were denied an opportunity to consult with the U.S. Secretary of Health. More disappointing is my belief that in the 10 or more years of this advisory Committee ’s existence, the Committee has never been permitted to consult with the U.S. Secretary of Health.
The CFSAC is composed of 11 voting members. In addition, there are ex-officio (or non-voting) members. The voting members are selected from CFS researchers, clinicians, and patients. The exofficio members represent various government agencies that have, or should have, an interest in CFS.
The Committee is managed by one administrator of the DHHS: that person was called an Executive Secretary, and is now called a Designated Federal Officer. In the Spring of this year, the Committee was down to only 10 voting members; one slot was unfilled. The loss of such a potentially precious contribution to the Committee and to its work, coupled with the knowledge that less than two weeks before the May 22 – May 23rd meeting there was no published agenda for the meeting, are indications that the CFSAC is not granted the care and attention that we think it deserves by the administration of the Department of Health and Human Services.
Regardless of personal feelings, and regardless of how well the Department of Health and Human Services satisfies the needs of, or pays attention to its Committee, what is important here is the outcome of 10 years of Committee activity: Has it made a difference?
In 2003, and in order to advise the U.S. Secretary of Health on matters related to ME/CFS, the Advisory Committee formed three subcommittees: Research, Education, and Patient Care. The subcommittees worked on projects between the quarterly meetings of the Advisory Committee; reporting to the Committee and seeking action of the Committee at duly constituted meetings of the entire Committee.
Sadly, the Department of Health and Human Services has halved the number of meetings; instead of meeting four times per year, the Advisory Committee currently meets two times per year.
Assessing CFSAC’s Effectiveness Ten Years Later
So what is the outcome after 10 years of a CFSAC?
The only data describing the federal contribution to ME/CFS research seems to be that of Pat Fero, Executive Director of the Wisconsin ME/CFS Association. It has been published in that organizatio n’s Lifeline (Vol. 24(4):7-11.) Pat searched public data for new, CFS grants awarded by the National Institutes of Health. For the eleven-year period of 2000 through 2010, new extramural funding for CFS never exceeded 2 million dollars per year. Thus, the repeated recommendations of the Advisory Committee for new and increased research funding seem to have been largely ignored.
In view of the federal government’s disappointing level of funding of CFS research, the private sector has pitched in: The CFIDS Association, initially a patient advocacy organization, became a research stimulus organization. The Chronic Fatigue Initiative, funded by a private family foundation, seeks to accelerate the development of new solutions for CFS patients by bringing together academic partners for collaborative research. Simmaron Neuroimmune Research Foundation is funding pre-pilot and pilot investigations. The Open Medicine Institute is applying a multi-disciplinary, “ big data” appro ach to adv ance the underst anding o f “ difficult” diseases, including CFS, w ith t he aim o f im prov ing patient outcomes.
At the time of formation of the CFSAC, the Centers for Disease Control had a program in which trained healthcare professionals would deliver Continuing Medical Education courses to physicians throughout the United States. The courses objective was to teach primary care providers how to diagnose and manage ME/CFS patients. The CDC terminated that program stating it was ineffective. The CDC replaced that program with an online CFS course which, they claim, reaches many more physicians. Yet, the number of physicians willing and capable of providing definitive care to CFS patients in the states of Vermont and New Jersey (the two states in which I have knowledge) has declined.
On several occasions, I enumerated to the Advisory Committee existing programs within both the NIH and the CDC that could be used to provide CFS training to physicians and medical students. These programs could provide CFS education and training at no additional cost to the federal government. These opportunities were never discussed much less implemented.
To my knowledge, the only active programs to educate medical students about CFS are medical student scholarship programs in New Jersey and Vermont. Both these programs are sponsored by patient advocate organizations and have run for a number of years. The Wisconsin CFS/ME Association ran but terminated a similar program. The federal government has not partnered with any patient advocacy organization to provide or assist in delivering CFS education to medical students, despite lacking a medical student education program of its own.
Despite the CDC having data that more physicians are aware of CFS because of its online, CME program, there is no evidence that such awareness has improved the lives of CFS patients. On the contrary, anecdotal evidence suggests that there is a decrease in the number of physicians able and willing to provide definitive care to CFS patients.
Of deep and immediate concern to patients is the apparent disinterest of the federal government in the adoption of the American Psychiatric Association’ s DSM-5 within the United States. If adopted, the DSM-5 will negatively impact the level and quality of care of CFS patients. The Diagnostic and Statistical Manual of Mental Disorders (the DSM) is a classification of mental disorders used in the United States. It is used for insurance purposes. The DSM-5 reclassifies CFS as a somatoform disorder. By so doing the physiological basis of CFS is denied, and an exclusive mental origin of the disorder is implied. To our knowledge, this reclassification was made without consulting any of this country’s or the world’s leading experts in the field of CFS.
In conclusion, the outcome of 10 years of a CFS Advisory Committee in the United States is not positive. The voting members of the Advisory Committee may have done their best to put forward recommendations that would improve the situation of ME/CFS patients, but putting forward recommendations is insufficient to effect positive outcomes.
Despite the lack of a positive outcome, the CFSAC needs to continue. A portion of each Advisory Committee meeting is devoted to public testimony during which patients relate their experiences. It is important that the pain, suffering, and sometimes death of these patients, is made public and recorded for posterity. It is important that these meetings are open to the public and are webcast so that public viewing and education is maximized.
Since this illness costs the United States an estimated $1 billion/year, it can only be hoped that taxpayers will eventually see the advantage of spending less money per year, perhaps 1/20 of that amount, 50 million dollars per year, on CFS research, and education. Only such cost-cutting measures will effect treatments and an eventual cure for this illness.
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