The public comment presented at the CFSAC meeting October 3 and 4, 2012 was strong, and some excellent points were made (some of them over and over again). Federal funding for ME/CFS research is pitifully small and the public comment by Ms. Janelle Wiley provided some interesting comparisons.
Ms. Wiley (who provided her comment by phone) has kindly given permission to share her public comment here:
“Hi, I cannot travel to speak to you in person but it’s Good to be with you by phone; thanks for your attention to ME/CFS. One thing that strikes me when listening to CFSAC meetings is that there is never any encouragement for any funding.
There is no reason under the sun why ME/CFS is not being funded like any other disease. Yes, I get that there is a budget crisis and we need to spend less on the national budget. But the amount being spent on our disease or disease spectrum–6 million dollars in a good year–is easily available to many state budgets. North Carolina spends 10 million on aquariums. The city of Glendale, Arizona, spent 23 million in outside counsel over 5 years, which is 4 million per year (we get that amount some years). California spend almost 45 million on new vehicles and almost 30 million on new furniture. New York is spending 50 million dollars on ads promoting its business policy. These aren’t necessarily bad projects; point is that our budget or even 5 times more is well within the reach of a much smaller body right now in this current economy.
It is shameful that ME/CFS is basically not being funded.
Whatever model it is we are using to fund research, it should be applied to ME/CFS the same as to Lupus and cancer and Alzheimer’s, taking into consideration the burden and incidence of the disease.
I do not know what the hangup is, but it is not the sad state of the national budget. That’s just an excuse. Whatever the problem really is, please fix it. This is a very serious disease which isn’t being handled seriously at all. I don’t think the problem is in this room, but please talk to your uplines. Thanks.
In using funds to do studies, there are two main things that need to be addressed. One is the SEP panel. Typically it is staffed with mostly people who are mostly interested in psychogenic theories. These theories are not scientific—e.g. cannot be proven and do not consider alternate hypotheses or accept disproof—and have not yielded any useful ideas: they did not for Parkinson’s disease or multiple sclerosis, and they are not for fibromyalgia, TMJ, or ME/CFS. It is past time to consciously change the bias from the psychogenic to the biomedical.
The second is the definition. There has been a lot of talk about lumping and splitting. Both are appropriate methods of approaching a problem—to a point. But there is a point at which lumping becomes absurd. When you are no longer lumping “people who are similar to ME/CFS” together and you’re gathering “people whose doctors or researchers have not (or have not bothered to) figure out what’s actually wrong with them”, you’ve gotten to the absurd point.
There are multiple inclusion criteria for CFS or ME/CFS being used. It’s well known that the Oxford inclusion contains large numbers of people who can be diagnosed with other conditions. A Newcastle study demonstrates this. David Tuller wrote about it in the New York Times. We wrote about it in ME Analysis. It’s been mentioned here at CFSAC a lot. The Oxford inclusion identifies people who have longlasting fatigue of definite onset without requiring other symptoms. CDC says this is “idiopathic chronic fatigue” and not CFS. Yet the CDC, like most everyone else, makes heavy use of Oxford studies to decide what to do with ME and CFS patients. This is not science. It’s kind of, quackish. Many articles in the literature call attention to problems with this.
The “Empiric” surveys which are used by CDC to attempt to operationalize the Fukuda criteria select—almost entirely—people who do not have ME/CFS. This approach to inclusion has been rejected by CFSAC, by the international symposium at Bond University, and by patient advocates around the world. And in the literature. The problem with this approach is that it allows feeling depressed or sad to substitute for debility and fatigue. Those are not actually the same thing. It’s no wonder CDC’s webpage claims it’s difficult to distinguish between depression and CFS! They looked for depression under the title of CFS, and found depression, which they label CFS. Funny how that works.
Also, education. CDC is very proud of themselves that they have educated a lot of people. What they may not realize is that, partly because of the uncorrected problems with inclusion criteria, CDC’s information is very wrong in many particulars. Despite the urgent need for physicians to know about this condition, I, like many others, am actually appalled that multiple health care providers have seen CDC’s education. Misinformation is actually worse than no information. The IACFS/ME’s Primer is a useful document which exists now.
So in summary, what we need is funding—and this is attainable—and we need to use it wisely. Quit relying on the psychogenic model, and instead rely on a model that produces solutions: biomedicine.
- Newton JL, Mabillard H, Scott A, Hoad A, Spickett G. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb. 2010 Dec;40(4):304-7.
- http://www.nytimes.com/2011/03/08/health/research/08fatigue.html and author reply to White et al. http://www.nytimes.com/2011/03/15/health/15letters-STUDYINGAFAT_LETTERS.html?ref=research (see all of Tuller’s articles http://www.research1st.com/2011/12/08/tuller-tells-it-like-it-is/ and an interview with him http://www.theopennotebook.com/2012/01/18/david-tuller-cfs/ )
- Bond university. International Science Symposium for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/ CFS). 02-04 December 2010. http://www.bond.edu.au/research/research-at-bond/events/BD3_014159
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Thank you to everyone who participated (in any way shape or form) in the October 2012 CFSAC meeting!