Monday, February 28, 2011


Why Some Patients Have Had Enough 
of the CAA

When it comes to the CFIDS Association of America, patients Khaly Castle, Otis Quila and Liz Willow have reached critical mass.  They’ve just devised a “Petition to disassociate from CFIDS Association of America as our advocacy representative” because they believe that the CAA isn’t doing its job.  In one day, 205 patients have signed the petition, with a goal of one thousand signatures from all over the world.

Castle, Quila and Willow will present the petition at the May 2011 Chronic Fatigue Syndrome Advisory Committee meeting and also let the NIH and the CDC know that the CFIDS Association no longer speaks for the majority of patients. Explains Liz Willow, “[NIH administrator] Dennis Mangan realizes the patient community is diverse and reaches out to a number of individual advocates, Facebook page founders and bloggers on a regular basis.  But the CAA still seems to be perceived by many government officials as representative of patient wishes.  We didn't feel we could wait for a new organization to establish itself before rolling out the petition.  Patient sentiment for this type of petition is high, and we wanted to capture that momentum.”

Brewing dissatisfaction
The dissatisfaction with the CAA has been brewing for a long time but deepened after the first paper linking XMRV to ME/CFS was published in October of 2009.  Khaly Castle observed that the CAA maintained “an air of skepticism when they could have instead taken this new piece of science and turned it into a platform for some pretty powerful advocacy. In my mind,” Castle contends, “it just confirmed that this group is nothing but an arm of the entity it had contracted itself to for so long:  the CDC.”

Brian Smith and Jennifer Spotila 
A blogger as well as a patient, Castle in 2009 wrote two articles on the CAA that garnered huge response from patients.  (To read the articles, click here and here.)  After Castle posted them, CAA board member Brian Smith told her on Facebook that the CAA was listening.  “Then I never heard from him again, despite friend-requesting him,” Castle recalls.  However, Jennifer Spotila, who at the time was board president, contacted Castle directly, asking her to forward whatever patients wanted to tell the CAA. 

That’s when Castle started a new post, “CFIDS Association— What do you want to say to them?”  Gathering the hundreds of patient comments and questions that resulted, she forwarded them to Spotila.  But in the end, says Castle, “We got very little feedback and little or no visible change from the CAA.”

McCleary's response to the PACE trial
Most recently, it’s been CAA President Kim Kenney McClearly’s reaction to the PACE trials that Castle, Quila and Willow have found problematic. Of the PACE trial, which endorsed cognitive behavioral therapy and exercise for CFS, McClearly rattled off to CNN a peculiar commentary that appeared to endorse the bogus findings: “I think it would be challenging, at least in the U.S. system, to purchase the services that they've tested in this trial,” McClearly stated, adding this:  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.” And, finally, this lackluster shrug: “It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available.”

Castle says that with McCleary’s response to the PACE trial, it’s clear that the CAA’s advocating for a chronic fatigue light kind of illness that’s primarily about generalized fatigue—as opposed to the serious neuroimmune disease that ME/CFS really is.  The result is “muddying the diagnostic waters,” Castle says.  “This is not only unhelpful, it's extremely harmful.”

Suzanne Vernon and spinal fluid
McCleary isn’t the only CAA representative who’s been a problem.  Last week Dr. Steven Schutzer’s team at the University of Medicine and Dentistry of New Jersey published on a distinct abnormal protein signature in the spinal fluid of ME/CFS patients, which apparently was a yawn to CAA Scientific Director Suzanne Vernon, who told the Wall Street Journal’s Amy Dockser Marcus: “It’s difficult to have a diagnostic test based on spinal fluid. You can’t just go poking everyone in the spine.” 

Vote to be heard
On the Phoenix Rising patient forum, so far 147 patients have participated in a new CAA poll, with 138 voting that it’s time for a change in direction and leadership. Cast your vote on Phoenix Rising and be heard.  If you believe the CAA doesn’t speak for you, cast your vote on the “Petition to disassociate from CFIDS Association of America as our advocacy representative.”


  1. I signed! And because of your post, I am removing the cfids association link from my blog. I have heard enough now from you, and others--not to mention how many times over the years the cfids association has ignored my calls and emails for help--to convince me to disassociate from them. I am also going to post about your post on my blog!


  2. Judy, what's the URL of your blog so that patients can find you?

  3. Thanks, Mindy:

  4. Thank you, Mindy. I appreciate your accuracy in reporting! Your voice is a huge help to the community.

  5. Yes, thank you Mindy, for being a voice we can trust.

    "CFS" has been a source of so much controvery that "confusion spreaders" find a comfortable home inside the heaps and piles of obfuscation.

    Your incisive reporting cuts through it like a slashing scythe.

  6. I think we must also clarify that Pandora and its offshoots dont speak for us either.That should also IMO be in the poll. There is no point replacing one false advocacy organisation with another

  7. is the petition open to people who live outside the USA?

  8. Lee Lee, Good question. Anyone, anywhere, can sign. You don't have to be in the United States.

  9. I agree with you, Gerwyn. This petition did spell out that the patient community has its own voice. But this particular petition is about a decades-long history of misrepresentation and collusion on the part of an organization that has been in on the obfuscation of our illness from almost the beginning. There are SO many other issues that affect us, but we have to take them on individually and decisively...otherwise, the points get lost in the shuffle. :)

  10. I have not supported CAA in years, and I also am unhappy with the remarks of Kim and Suzanne. Even worse, in my opinion, is the craziness and anger in the forums that show that some patients truly are psych cases and incapable of adult discussion without personal attack. And congratulations, they are supporting the destruction of all the organizations that have accomplished anything and left nothing in their place. That's dumb. I'm ashamed to be part of that group and have left the forums; I realize that this all hurts the movement and wish they could see that. The CDC could have a field day if they chose to post quotes from the forums.

    And one last comment: a spinal tap is a serious procedure with very serious risks and is clearly unsuitable as a diagnostic test. If people were not hunting for things to fight Vernon about, they could see what she meant.

    I don't see how we could ever get the respect of the medical community when people act like this.

    I think Mindy's columns are great and helpful, and I agree that the CAA needs a new leader. But only a tiny fraction of viewers voted against the CAA on the forums, in spite of double posting. (Note the ratio of votes to views, even accounting for repeat views.)

    Lots and lots of talk and nothing constructive happening. Just mentally wandering all over the place shouting criticisms of everything. Fortunately it is mostly the same small number of posters hijacking the forums. Everybody should read Osler's Web again with an eye toward advocacy. I hope rational people take back the forums.

  11. Mindy,

    If you had contacted me, I would have been happy to answer any questions you have about the Association or the incidents you cite here. I did respond to Khaly Castle in 2009. The Association did make changes to its website and operations in response to feedback we received through Khaly's postings and other venues.

    Kim McCleary gave a very lengthy interview on PACE to CNN, and another to NPR. Both reporters chose to use only one quote from those interviews. Both reporters had also been prepped by the authors of the PACE trial to expect and dispute the objections raised by McCleary and other advocates to the study. Their questions to McCleary and the pieces they produced reflect this.

    I strongly encourage you to balance your reporting on the advocate point of view by interviewing a diverse sample of us. Reasonable minds can and do differ on many aspects of CFS advocacy. I continue to believe that dialogue serves us better than monologue.

  12. Jennifer Spotila said:
    "Both reporters had also been prepped by the authors of the PACE trial to expect and dispute the objections raised by McCleary and other advocates to the study."

    maybe CAA should have prepped the reporters to challenge the PACE trial, not agree with it that is showed that GET and the harmful version of CBT are modestly beneficial to pwME.

  13. A couple of thoughts on the post by anonymous...

    I think that an advocacy organisation that actively works against those it purports to advocate for is worse than no organisation at all. Once you've got into bed with the enemy you you have compromised yourself, and the CAA have clearly got into bed with the CDC. That's a difficult, if not impossible, position to come back from. So if they are no longer an advocacy organisation and they do not represent the wants and needs of their members, it begins to look very much like a few people on big salaries who are willing to sell themselves out to keep them. I am not a supporter of the CAA and never have been. This is not because of the criticisms I've heard about them, it is because there is nothing that they do or have done that benefits me as a sick person. They never responded to an email I sent them about a year ago asking for assistance contacting a researcher so that I could find a doctor in my area (a simple no, we can't help you would have sufficed), they do not actively support the WPI in furthering the science surrounding XMRV, and the last time I looked at one of their webinars it was advising patients on how to manage their illness, which had me choking on my tea. I think people who have been dealing with this illness for decades might have worked that one out for themselves by now... I know I have. The truth is that the illness is basically unmanageable, which is why we're so desperate to further the science for treatments.

    I agree that there are crazies on the forums saying all sorts of cringe worthy things which probably don't help their cause much (or ours). The only real problem I have with that is that it drives away people with useful comment to make. Whether or not the nay sayers use it as evidence of craziness however is neither here nor there because it's not really an issue of whether "CFS" patients are crazy, this is and always has been an issue of human rights. Even if we ARE all mentally deranged and government health agencies are reading our posts for proof of it, they still have a duty to investigate (exhaustively) whether the illness has an organic cause and, if so, to find appropriate treatments. That's what we and our families pay taxes for. We do not have to prove we are not crazy as an entitlement to treatment.

    To Jennifer Spotila I would simply like to say this. Where is the outraged response (dialog if you like)from Kim McCleary to CNN?

  14. Ms. Spotila,

    The Wizard behind CAA's PR curtain has stated CAA is no longer an advocacy organization. As others say, then CAA should not offer itself as such to the media. Since it did, "No comment" would have sufficed for many of those questions.

    This could pit some valuable researchers (not many, but a few) in a royal pickle. I'm not certain that aspect has been totally thought out. Division is exactly what the Feds want, and they're getting it; here's crossing fingers the outcome is something they'd never have bargained for - at the very least, a few thousand ostrich pulling their heads out for our own good.

    But as the petition letter suggests, this is about a 20+ year history of playing softball and not calling out the spade in plain sight. I myself recall a Chronicle article from 11 years ago which, in context of its section, suggested the way to what passed for recovery might be to do nothing. Tell that to Dr. Lerner's scarred-heart patients and those who've protested Ampligen delays before CFSAC while the CAA was, well, wherever they were. Tell it to our dead family members and friends.

    A soft inner voice has its place, but a firm, outer voice must accompany it to win any war, and this is one for people's lives. CAA's leadership remains unable to engage neither the media nor the Feds without drawing lines in the sand when needed. This really was just a matter of when.

  15. Jennifer, to say that the CAA responded would be accurate. To say that the CAA responded in a meaninful way would be inaccurate.

    In 2009, a thread was started on Phoenix rising. The discussion over there continues to this day, about basically the same issues.

    After we tried to have a meaningful dialogue, CAA was asked to help us fight the DSM5 issues. The response was meager and meaningless, basically boiling down to the suggestion that we should go ask the IACFS/ME as CAA did not feel informed enough to take a stance. I notice the same conversation evolving regarding ICD codes right now.

    Mindy already cited and linked to two of my articles voicing some of the concerns we had in 2009. We are still facing the same concerns...lack of adequate response to ill-defined cohorts in X-negative studies, inability to take a stand that CFS is NOT what the CDC likes to describe, inability to advocate for the sickest of us, inability to verbalize a distinction between this illness and the grab bag of fatiguing illnesses....on and on.

    For more on some of these issues, see:

    You will notice that not much has changed.

    A few months ago, after the "Inside Voices" article was presented to us, I asked the CAA on Facebook if the CAA still considered itself an advocacy organization, or if it had decided to become a science and research organization. You answered, that they were indeed an advocacy organization, but that there were many ways to advocate. The conversation and surrounding events are documented here:

    This can no longer be about promotion of promotion. It has to be promotion of what will save us. Many of us are facing not only the end of our ropes, but the end of our time. The clock is ticking.

  16. I'm in agreement with the prior posters who said they have tried to e-mail the CAA with questions or suggestions. I don't expect the CAA to answer all my e-mail but I do expect an answer to at least one e-mail. Instead, I feel like my e-mails just entered a black hole.

    Hence, I am lowering the amount I give to the CAA contingent on what their future actions are.

    It is disigenuous of the CAA to refer advocacy to the IACFS/ME. I've seen the CAA try to turf things off to other groups. The IACFS/ME is a scientific group and does not present itself as a patient advocacy group.

  17. I wonder if it is a good time to develop a ME advocacy action plan and move beyond the debate? I would like to see an open process where international feedback and consultation occurs.

  18. Cutting through the BS and obfuscation, if we had an effective advocacy organization we'd have been making a lot more noise than we have been, and we wouldn't be grateful in 2011 solely for the meager news that our disease is being officially recognized as a physical entity.

    Only since patients started getting online and forming their own communities have I felt that we're raising the appropriate amount of rabble.

    And buzz off with your ad hominems, anon.

  19. ---gerwyn said...

    I think we must also clarify that Pandora and its offshoots dont speak for us either.That should also IMO be in the poll. There is no point replacing one false advocacy organisation with another

    I would appreciate if you would not use "we" and "us" because you definitely don't speak for me

  20. ----gerwyn said...

    I think we must also clarify that Pandora and its offshoots dont speak for us either.That should also IMO be in the poll. There is no point replacing one false advocacy organisation with another

    I would appreciate it if you would not use "we" and "us" because you definitely don't speak for me.

  21. haly said: "This can no longer be about promotion of promotion. It has to be promotion of what will save us. Many of us are facing not only the end of our ropes, but the end of our time. The clock is ticking."

    This is absolutely true, and it is the reason why both the CFIDS Assn of America and PANDORA have failed us. CAA is about promoting their organization and their research. PANDORA is about promoting their organization and their NEI Center in New Jersey.

    What patients need is someone who will actually be about US--about helping us toward better health, not about promoting their own organization and their own chosen projects. The biggest thing I've noticed is that neither CAA nor PANDORA do anything to help WPI research HGRV and other HRV's, and at the moment this is where the most hope for help for sufferers is coming from. Since CAA and PANDORA won't do this, we need a new organization that will.

    Patricia Carter
    XMRV+, 24 years M.E.

  22. This is how you do it. Issue a statement like this, then refuse interviews if you can't control what you say or what gets taken out of context.

  23. ----Patrica - PANDORA is about promoting their organization and their NEI Center in New Jersey.

    Yeah, I guess it would be a horrible idea to have several centers of excellence like the future initiatives NEI Center and Stanford working on the problem too. Geesh!

    ---we need a new organization that will.

    Good idea... since you seem to understand advocacy so well maybe you should put down that Koolaide drinking board of yours and and start one. It easy to criticize, it is much harder to get involved and solve problems. Let us know when you are up and running and changing the ME world.

  24. If Gerwyn, Khaly, Patricia and others don't think that there is any organization that represents them, then I challenge them to start their own organization that does represent them.

    If you want to support the WPI, there is already a program, started by patients, called Count Me In to donate to the WPI every month on the 20th of the month. If money is an issue (like it is for most of us), you can donate any amount even as low as $1, which should be affordable for most people.!

    I think this is a great example of people quitting whining and getting off their butts and actually doing something meaningful and constructive.

    I challenge others to do the same.


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