(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
Ken Friedman’s ill daughter prompted his work with the ME/CFS community
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.
Committee Structure
CFSAC meetings are down from four a year to two, and the present ‘meeting’ is an abbreviated webinar with few speakers
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?
Research
The federal governments feeble financial support of ME/CFS research has not changed in over ten years
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.
Education
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.
Dr. Friedman reports that ideas to enhance education at no cost to the federal govt. were rebuffed.
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.
Patient Care
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.
Conclusion
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.
Ken Friedman gives the federal government a thumbs down on its support of CFSAC and the ME/CFS community, but says the committee must continue
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.
- Radio Interview with Dr. Friedman
- Ken Friedman speaking on a variety of ME/CFS topics
- Interview with Cort Johnson
I am a 72 year old woman who has had CFS for almost 20 years. This report is very depressing, though not unexpected. I follow the “research” on CFS religiously and have noted that not much has changed in the 20 years I have been stricken with it.
Before becoming ill, I was a practicing clinical neuropsychologist. So I was very interested in the comment about the DSM 5 listing CFS under somatoform disorders. Consequently, I looked it up. CFS is not listed under this category, though chronic fatigue is listed as one of the symptoms of this disorder along with a number of other symptoms some of which are not unlike CFS symptoms. However, somatoform disorders are also accompanied by such things as catastrophic thinking e.g., “I have a stomach ache, it must be cancer!”
There are a number of other symptoms that distinguish CFS from somatoform disorders.
I must say I breathed a sigh of relief. About the last thing we need as a community is to be listed in the DSM 5!!
I appreciated all that is being done by the few brave souls, physicians and patients alike to help us get a handle on this debilitating illness that is destroying so many lives.
RE:
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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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The illness costs the US a lot more than $1 billion/year.
The CDC estimated productivity costs of $9 billion:
Reynolds KJ, Vernon SD, Bouchery E, Reeves WC. The economic impact of chronic fatigue syndrome. Cost Eff Resour Alloc. 2004 Jun 21;2(1):4. That was based on “454,439 individuals nationwide suffer[ing] from CFS.”
A team led by Leonard Jason estimated “the direct and indirect cost of ME/CFS to society [..] to be $18,677,912,000 for the community sample and $23,972,300,000”. This used a prevalence of .42% (Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. The economic impact of ME/CFS: individual and societal costs. Dyn Med. 2008 Apr 8;7:6. doi: 10.1186/1476-5918-7-6).
Both these studies used research definitions where people with co-morbid conditions were often excluded so could be seen as underestimates of the full cost.
Thanks as always Tom for being on top of this (and thanks for those links too :))
how can these figures of $1 billion, $10 billion, $23 billion be trusted? The ICC definition clams that 1% of the population are afflicted. As most with ME are undiagnosed, according to the CDC, the statistics and costings are inaccurate. The lack of proper diagnostic technologies and educated doctors means many with ME are undiagnosed, unidentified and unseen. The following study estimates a cost in terms of lost productivity of £22,684 per ME patient to the British economy
‘The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database. Simon M Collin, Esther Crawley, Margaret T May, Jonathan AC Sterne and William Hollingworth. Collin et al. BMC Health Services Research 2011, 11:217.
One has to add the costs of health care, doctors and medicines to this figure. This would include costs to the state, the individual and the insurance industry. No published study has quantified the costs of ME and CFS to an economy. Thus all such figures and studies are highly inaccurate, and cannot be used or quoted.
Cort,
First I want to thank you for all the hard work that goes into a tremendous gift of organizing and presenting information around ME/CFS/CFIDS and FM. I am curious and concern…I rarely hear the National CFIDS Foundation (NCF) mentioned. Often I see research done here that other researchers, including the American CFIDS Association, are unaware of. And with this lack of coordination, precious funds available are spent repeating research done by the NCF, some a decade earlier! Aren’t we all wanting the same things?
Warm Regards,
Susan
Thanks Susan,
I’m actually out of the loop with the NCF. I was interested in their ciguatera epitope research of several years ago. That’s the last I know, though. I hope they’re doing some good stuff. 🙂
This is so discouraging. I recall a year or so ago someone asked President Obama personally what was being done for CFIDS. He promised to look into it but whatever he did, if anything, must not have had any effect. I will say that when I was in the hospital last year, I was encouraged by the response from nurses re CFIDS – they seemed knowledgable and accepting of it, more so than doctors.
There is definitely more interest and knowledge about ME/CFS than before. I think what Ken’s pointing is that the feds, who usually take the lead in sponsoring research in disorders, haven’t been in ME/CFS. It’s basically happening in spite of them.
However, I would argue that the IOM contract, as controversial as its been, did offer a gleam of hope. Somehow the NIH decided to spend a million dollars on ME/CFS in the middle of sequestration and all this other nonsense (:)). That’s kind of remarkable.
Wanda Jones asserts that the level of interest in chronic fatigue syndrome has never been higher in the federal govt, and ‘the promise’ is one of the reasons why.
I don’t know if it means its very high relative to other disorders, but at least we’re moving upwards a bit 🙂
I’m afraid you’re going to be disappointed by a blog coming up that is really damning of the feds; it’s even worse in fact that this one…:(
Still I think there’s reason for hope with the FDA doing their thing, a clinical and a research definition on the way, and the feds spending a bit more money on ME/CFS.
Everyone, Please do NOT forget that the CFSAC was started just after 9/11
and this country’s Gov’t was GLEEFULLY starting 2 wars abroad and enacting the Newly formed Patriot Act giving all of those powers to the NSA.
During the last 10 years with OUR HELP the CFSAC, including the PR, for better or worse we got some attention due to XMRV and have had to before that
been defending ourselves from the “Fatigue/Psych” label that the CAA helped the CDC pin on us….
In addition, Pres. Obama has had a hard time getting The House to pass ANYTHING, let alone more $$ for Research… except screw up the one
Bill that DID get passed even after too many concessions were made that
Everyone is paying the Price for.. re The ACA !! What good will Medical coverage do any of us if there are NO Educated Dr to treat us ?
But the Economy is NOW starting to Turn Around and Now is NOT the time
to Get Quiet OR STOP Any Advocacy… As they say,
“It’s Always Darkest just Before the Dawn.”
So Stay Active, Stay INVOLVED, Write+Call your Congress People, and
even write to Pres. Obama… Tweet to Everyone, Celebs, NewsPeople, and Politicians.
Pick UP the Mantel of Thomas M. Hennessey Jr and
~ DO NOT LET HIS DEATH BE IN VAIN ~
We have 2 New Documentaries being made and Howard Bloom is even giving us PR now…
The CFSAC is Only “ONE of the ways + places we can Be HEARD.”
Keep Writing, Keep Speaking, and NEVER GIVE UP !!
Thankfully Even Dr Ian Lipkin BELIEVES that we have a REAL Biological DISEASE and even his studies showed some patients HAD antibodies to
RetroViruses that have YET to be Identified….
We NEED to get Private Backing for Studies and GO FORTH with New Research
but NOT Let this IOM “BS” (waste of OUR Gov’t $$) Go thru silently !!
We have already had Researchers and Clinicians from AROUND the World
Speak with ONE UNITED VOICE ~ SO Must we continue to do so !!
Today in San Francisco we even had a Demonstration and tomorrow there will be another in Wash DC, so Write + Call Your Congressional Senators & Reps
This Tuesday, PLEASE, cuz the CFSAC meeting starts on Tuesday also !!
http://www.prohealth.com/library/showarticle.cfm?libid=18533
Does NO ONE Remember the DeCADES that Thomas M Hennessey Jr devoted to his Advbocacy and RESCIND ? and Created May 12th Awareness Day ?
Even Now I can hear him and I REFUSE to let hi sDeath Be in Vain ~
I can hear him telling me about his “TV battles, The NIH & CDC Battles with Strauss & Reeves and how he would lie on his darn foam pad in the back of the meeting room and sometimes YELL OUT if they made an especially egregious lie.”
Well….. KEEP Listening and Keep Speaking and Yelling OUT
and NEVER GIVE UP, OK ? Like Mandela… He was in Jail about as many years as most of us have been sick.. He didn’t give up.. He said that “They can’t take my Mind & Heart away.” Same for US. Ignore the Nay-Sayers and
Keep Your EYEs on the Target ! OK ? Expect a Miracle or you will NEVER Get one !
This was some really helpful information, especially about the CME courses and medical student scholarships. I knew Dr. Komoraff had done CME in Alabama and the CFIDS Association of America had sent me the online course he did with Dr. Lapp and Dr. Bateman. Although it’s obviously terrible for patients and physicians, this blog post was good for me to read so I know what resources are out there.
One of the neat things we’re looking at doing through our documentary film, The Blue Ribbon, is enabling doctors and nurses who watch it to qualify for CME credit. This has been done with several general release documentary films, including the really stellar film Escape Fire, which was about healthcare reform and was purchased by CNN in 2012. I think this would be a much more innovative way to do CME that could capture an unusual level of attention. I’ve been laying the groundwork to make this happen for our movie.
And similar with the Blue Ribbon Fellowship that we’re starting. Our CME program will target the film to practicing doctors, while our fellowship program will target those currently in medical school. I had known there wasn’t a whole lot out there in this regard, so it was good to get another opinion here.
If folks are interested in hearing a little more about our fellowship, we have a 2-minute video and some info here:
http://theblueribbonfoundation.org/blue-ribbon-fellowship/
Thanks to Dr.Friedman and Angel Mac for telling it like it is and thanks to Cort for helping put the truth out there!
I have three teens with cfs and became very unwell this summer and wheelchair bound. I was let down by the hospital so studied. I managed to get myself out of my wheelchair and found tests that show a problem in my three teens WHEN THEIR BLOODS ARE NORMAL.
If you would like details you are welcome to contact me on my email above. Thank you