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.
No Poster Girl 
I would be right behind you sister, if I could only remember if I gave.
That sounds like a ME/CFS sufferer to me!
Nice article- Our entire family and friends did give, and fundraised etc for the CAA . Believe me- living in this NC state- is disgraceful after what happened to our family. But knowing that an organization that we once supported left us hanging on with no hope-speaks for itself.
Thanks, Lisa. So glad to hear that Ryan is back with you. It’d been a while since I caught up on your story. Your family knows amply that the UK is not the only place ME/CFS patients’ families are persecuted. That that could happen in a town with a prominent ME/CFS doctor is shocking.
What the hell is she talking about, we don’t have those acronyms here? Did she just not read the study before speaking? This sort of thing has been pitched to me, twice, on American soil. By a “rehab institute” in Portland who could not understand that, not only could I not even possibly be expected to go through 6 weeks of what the admissions let slip was “hardening and conditioning,” I couldn’t even come in for an 8 hour intake, because I couldn’t sit up for more than twenty minutes, maximum. Hardening! What an awful word. Then there’s the Chronic Fatigue Clinic at Harborview / University of Washington, where they actually have formal CBT and GET. (Yes. Still.)
Those are unusually formal programs, but I think CBT and GET is pretty much standard therapy here (for people who get any treatment at all). I can’t count how many times new Primary Care doctors have written me a prescription for “total reconditioning,” to be tendered with my local physical therapist. Those “acronyms” are as available and dangerous here as in the UK. That’s the problem!
Ugh. Hardening, indeed. I’ve met some clueless docs, but I’ve never been offered CBT or GET.
Hi Jocelyn:
My son was “ordered” to exercise and keep doing sports. He did has he was “advised”. He collapsed at the State Track Finals, vomiting Blood. Oh, he won. The coach was happy. WE carried him to the car, drove 6 hours home and he remained in bed for nearly 5 years on/off. Our MD apologized.
An apology from an MD is a rare thing indeed. Sorry your son wasn’t spared the suffering he could have been had his doctor given good advice.
Contact the CAA and tell them what you think. I did and they responded with some sort of “nicely put” way of saying we won’t waste our time explaining ourselves to you.
CAA email to me:
Thank you for taking the time to share your concerns with us. We respect your views so will not attempt to dissuade you by responding to specific issues. We hope that as we communicate more effectively about our programs and mission, we’ll merit your support in the future.
Sincerely,
Kristina P. Hopkins
Chief Financial Officer
The CFIDS Association of America
PO Box 220398
Charlotte, NC 28222-0398
E-mail: kphopkins@cfids.org
Working to make CFS widely understood, diagnosable, curable and preventable.
http://www.cfids.org
I haven’t the energy to write them at the moment, but thanks for posting that reply. Wish they’d said they’d take your comments under consideration or something.
Ugh had a look at Gills slides….awful awful stuff! I see that in CFS treatment he highlighted ‘activity and exercise’ and rounded off the presentation with the PACE trial results. I’m not impressed with your ‘p’ values Dr Gill seeing as the study was poorly designed, run and evaluated. I dont care if your results ended up being ‘statistically significant’ as you used poor outcome measures, where they clincially significant (no obviously). Where are your confidence intervals? Where are your objective measurements? Did you mention that the patients that improved on the 6 minute walk test went from a rating of “shuffling around the house” to just above “shuffling around the house”, when compared to 6minute walk tests of healthy elderly average almost double that distance.
Awful is right! Hard to believe he is the person in Laura Hillenbrand’s essay who finally believes her and tells her what is wrong.
The entire CAA organization is a joke but really they just make me sad. I supported them heavily when I first became ill several years ago. But it didn’t take me long to realize how ineffective and even incompetent they were as THE organization that was supposed to be advocating for me.
They continue to make me sad.
I had the same experience – ineffective and incompetent. I remember a “Do you have CFS” quiz on their website. I took it and it told me I might have it, when in actuality I had a raging case with all the classic signs.
When the CAA was new, it was a great support to me and one of the few sources of reliable information. I don’t understand what happened along the way, but I quit sending in money some years ago. It seems their official stance is fence-sitting, and I am way too sick to be sitting on fences.
My disease has gotten worse (though I wouldn’t have thought that possible) – it’s over 20 years now – and as I struggle to be able to do the smallest tasks and try to fight my fears for the future as my husband and I age, I wonder why the CAA stopped taking this disease seriously.
I try to bring some sense of hope to people newly diagnosed and despairing, but hope doesn’t mean being less than truthful. The truth is, this disease changes your life. The truth is, some of us get worse over time. The truth is, the CAA isn’t what it started out to be.
I miss feeling there is a determined agency for advocacy in my corner. I’m so tired of the arguments when reality is staring everyone in the face. Alphabet soup pseudo-therapies don’t work, if they did none of us would be sick. Why is that so hard for them to admit? Yes, the newly diagnosed might need some advice adjusting – who doesn’t? But to tout that stuff as a viable treatment (which implies restorative effects) let alone cure…
…makes me sad.
Peace.
So well said. Sorry to hear you’ve been suffering so long. I’m hopeful that we are very close to some breakthroughs now, and even the CFS name will go away when all the retroviral findings shake out.
And you’re right: Some of us, like you and me, seem to have a progressive form of the disease. Will it be reversible, once effective treatments are discovered? I hope so. If not, I know I don’t have much time left.
Am too poor to afford giving in any steady way, but would never give to CAA. Here in Québec (CANADA), not much is going on (I guess our French language is excluding us from interest), but I’d rather send 5 or 10$ anytime to the SPA or an outfit like MIRA (guide dogs for the blind or otherwise handicapped) than organizations like CAA which is led by pompous you-know-whats who toe the government and insurance industry line. (We know what that is: either “they”re all a bunch of lazy bums or it’s all in their heads.)
I have been directing all my friends who have asked to the WPI…but dogs & shelter pets are more deserving than the CAA too!
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AssHats!
Spinal Tap are invaluable but rarely offered . Ive had x 3 already in EDs from Severe Progressive MyalgicE systemic fevers (contant systemic 38C past 10 years ..1.0C-2.0C above my pre-illness baseline 36.5C) ..Whilst near impossible when very Severe they are an important diagnostic tool ..painful ,yes, a pain in back (and arse ) and last one was unsterile at 3am in ED last time.. still no feeling in left leg due to inexperienced intern.. make sure head consultant is only permitted to “mess arou nd”
Ps- why are we contactly chasing the next biomarker to prove what we already know??? We have numerous accurate biomarkers already ie WHY ARE WE NOT DEMANDING CDSA LEVEL 5 OVERLAPPED WITH SPECT OR FMRI/ QEEG ..WITH COMPUTER MODELING AND AI /BIG DATA WE COULD OVERLAP DISEASE STATES WITH POTENTIAL TREATMENTS (IE ME = Ca Channel Disease.. Overlap Disease Genome with Cannabis Genome .. Indica and CBD directly interacts in Ca Na channel diseases if high doses and broad stectrum of Cannabinoid molecules used ie most successful for my Severe ME .. 4:1:1 ratio CBD: CBDa: THC (200mg:50mg:50mg) x 4 p day xx