The CFIDS Association of America should be having a banner week. Last Friday, the scandalous PACE trial, promoting cognitive behavioral therapy and graded exercise therapy for ME/CFS, came out in The Lancet, which was an opportunity to come out swinging if ever there was one.
Then Wednesday evening, a study of spinal fluid proteins appearing in PLoS One was released, which found distinct proteomes differentiating ME/CFS and Lyme Disease. It made it all the way to the CBS Evening News.
Surely this should be a triumphant week for a patient advocacy organization, right? Well, look what we got from the CAA.
In reference to PACE, this is President Kim McCleary’s quote to CNN:
“I think it would be challenging, at least in the U.S. system, to purchase the services that they’ve tested in this trial,” she said in a telephone interview.” The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here,” McCleary said.
Notice the total lack of mentions of the characteristic symptom of ME/CFS, which is post-exertional malaise – feeling worse after even minor exercise, and how dangerous pushing limits is in this illness. Also notice the lack of mentions of the clearly neuroimmune nature of ME/CFS, or the finding that up to 98% of those with ME/CFS are XMRV positive. Well, this got the community hopping mad (or it would have, if any of us had enough energy to hop). Don’t worry, though, they had that spinal fluid protein study to comment on to redeem themselves, right? So Suzanne Vernon, who used to work at the CDC (remember their great record on ME/CFS?) gave this quote to the Wall Street Journal:
“It’s difficult to have a diagnostic test based on spinal fluid,” says Suzanne Vernon of the CFIDS Association of America, a CFS patient advocacy group, who was a consultant on the PLoS study. “You can’t just go poking everyone in the spine.”
Yes, Ms. Vernon. For instance, we can’t go poking everyone with suspected meningitis in the spine, can we? She also fails to mention that there are a great many other already known laboratory findings that are characteristic of ME/CFS.
But those two quotes aren’t the most amusing part of this week. A member of the Phoenix Rising forums thought to put up a poll asking how people thought the CAA was doing, and, well – I’ll just let you click and see for yourself how it’s running.
I can tell you, if I had ever given them any money, I would be asking for it back right about now.
Edited to add: Need yet more evidence of where the CAA is coming from and who their friends are? Check out this post by Charlotte von Salis at CFS Central. She attended the recent in-house lecture “Chronic Fatigue Syndrome: Is there a virus?” on February 22 at NIH and notes that Dr. Fred Gill, graded exercise promoter, approves of the CAA. XMRV Global Action posted an advance look at Gill’s slides before the workshop – you can check them out here. When I went through them, I stopped counting at half a dozen demonstrably false statements.