Reprinted with the kind permission of Cort Johnson and Health Rising.
CFSAC is taking action!
The Federal Advisory Committee for Chronic Fatigue Syndrome (CFSAC) is getting proactive. They’ve been making recommendations for years, but it’s only now that they’ve gotten organized and serious enough to make their case for what they want. A subcommittee on Centers of Excellence (COE) is producing a document to explain why COE’s – combined research and treatment facilities- are needed in ME/CFS.
This effort is coming on top of a recent draft summary report from the Pathways to Progress group that recommended creating COE’s (or something very close to them) …It’s coming at a very good time.
“The intent of this survey is to establish the need for improved care within the United States based upon the quality of their care when compared to that of other illnesses within the United States”
They’re asking for people within the US to particpate in the survey. You can do that HERE.
First they acquaint the federal government with the facts about ME/CFS:
It’s more prevalent than multiple sclerosis (at least twice as prevalent). It affects about 4% of the population.
21% of people with ME/CFS are unable to work at all.
Most wait times to see ME/CFS experts are 3-6 months or more.
Diagnostic rates are about 20% of those afflicted. (Consider what bringing the diagnostic rates up to 80% would do to wait times…).
Most ME/CFS experts only accept private insurance leaving people on Medicaid in the lurch.
The Solution – Centers of Excellence
COE’s are not just a solution – they’re practically a necessity given how little most primary care doctors know about ME/CFS. The ignorance is no surprise: ME/CFS has little or no place in most medical school curriculums. With no Continuing Medical Education (CME) courses available the situation isn’t any better for doctors out of medical school. (That’s assuming, of course, they want to learn how to treat ME/CFS patients.) Because ME/CFS doesn’t fit well in our current medical system – special measures aka COE’s are needed if people are going to get help.
Chronic fatigue syndrome is a difficult illness to treat. In some ways it’s a unique illness; the definitions are symptoms-based, few treatment regimens exist, and doctors have to wade through subsets in order to figure out what works. Even for ME/CFS experts people with ME/CFS take time to understand. I remember Dr. Cheney saying it usually takes him a year or a year in a half to get a handle on what’s going on with a patient.
That suggests they don’t fit well into our medical system and special measures need to be taken if they’re going to get treated properly.
A network of Centers of Excellence would be the perfect place to produce a good definition, to methodically assess treatments, and to train young physicians and medical students.
Ken Friedman’s Report
Kenneth Friedman came up with eleven justifications for funding COE’s. He readily admitted that some of the arguments are stronger than others and that his document was a work in progress. I found the order of the arguments – from weaker to the stronger arguments – not helpful and reordered them.
Check out some nice strong arguments anyone could use to argue for more funding from the federal government.
#1 –ME/CFS underfunding – This justification comes with one of the most striking graphs I have ever seen that plots the prevalence of an illness against how much funding is spent on it. Look to the far right to a dot all by itself to find chronic fatigue syndrome spending per patient.
Ken’s juxtaposition below of funding for a very rare genetic disorder and ME/CFS is telling. The bottom of the NIH funding charts is largely filled by rare genetic disorders and disorders like chronic fatigue syndrome. One might ask how it is that 632 Ataxia Telangiectasia patients get more than double the funding of almost 500,000 people with ME/CFS (or about equal the funding of 5,000,000 FM patients.)
For the years 2010 to 2013, an average of $11.16 was spent on ME/CFS research per ME/CFS patient.
For the same years, $18,591.77 was spent for research per Ataxia Telangiectasia patient. Using the estimate provided, there are an estimated 474,000 ME/CFS patients in the U.S. while there are an estimated 632 Ataxia patients.
NIH spent 1,666 times more money on each Ataxia patient that on each ME/CFS patient..
#2 – ME/CFS is an under-researched illness – In 1995, there were less than 200 publications and in 2013 there were about 325: i.e. small growth has taken place in the field. ( It would be better if the 1995 numbers provided approximate numbers of studies rather than <200.)
#3 – the Public Health Service Act of March 13, 2013 mandates the treatment of medically underserved populations. Because ME/CFS patients are clearly a grossly underserved population, the NIH is mandated to serve them. You’ve got to look to the very bottom of the funding charts to find ME/CFS
#4 –Few Medical Schools Are Adequately Preparing Doctors to Treat ME/CFS – a study found that only five percent had an adequate curriculum on chronic fatigue syndrome.
#5 – To Support the Findings and Recommendations of the State of the Knowledge Workshop – The federal government’s State of the Knowledge Workshop in 2011 noted needs (more interdisciplinary research, greater understanding, more translational research) that could be filled by COE’s.
#6 – To Fulfill the Need for Neuroendocrineimmune (NEI) centers. COE’s would also enable physicians and researchers to study similar disorders such as fibromyalgia, Gulf War Illness, and Lyme disease.
Citing funding levels would make this a more powerful argument. Fibromyalgia actually gets less research funding per patient than ME/CFS. Irritable bowel syndrome, interstitial cystitis and migraine (another woman’s disorder that is poorly funded) – and TMJ could also be added to this list. They are all primarily women’s disorders with high rates of prevalence and low funding. They are natural allies for ME/CFS.
Mary Ann Fletcher’s Report
“Centers of Excellence represent a unique opportunity to create an integrative fabric in ME/CFS that unites clinical, laboratory and computational sciences in a truly translational effort for discovery and deployment of effective treatment courses, while training the next generation of expert clinicians and providing a national resource for patient care.”
Mary Fletcher then described how providing a cross-disciplinary approach (immune, neurological, infectious, exercise, etc.) to a multi-systemic illness under one facility would uncover new insights and develop new treatments all the while providing an educational base for current and future doctors.
Her vision of a sophisticated research laboratory integrating data from the “omics’ (genomics, proteomics, metabioimics) into their immunological, neurological and other findings was inspiring. She saw COE’s as a wellspring from which biomarkers, models of illness and targeted treatments that knocked down viruses and inflammation, reduced pain and improved cellular energy levels, would emerge. It’s exciting stuff.
To support CFSAC in its efforts to finally get the U.S. to produce COE’s for ME/CFS please take the survey.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.