More Propaganda: Still no Explanation from CAA for Disagreeing with Experts and Patient Majority

Based on context and substance, we have to assume that the latest blog entry posted on the CFIDS Association of America’s (CAA) website was written by Suzanne Vernon although it was not signed and the author wasn’t identified.

Suzanne Vernon is assuring us that she is not benefitting financially from being on an IOM committee. That is one of the most disingenuous statements I could imagine on the subject. There are many ways to benefit that are not financial. The currency here may not be money in any direct way (and I believe that to be true). It is power. It is about being connected. It is about building a resume, credentials, a career. All of those have the strong potential to indirectly benefit the CAA and/or Suzanne Vernon financially in the future, even if it will just be a matter of the CAA still being in existence, which looks more and more questionable.

As I pointed out in my prior blog post, Suzanne Vernon—who spent a majority of her career at the CDC where her “CFS” research with Bill Reeves was mainly into the psycho-social aspects of the disease—is on the NIH’s Special Emphasis Panel (SEP), a committee that reviews grant applications for “ME/CFS.” That position alone bestows an incredible amount of influence over ME research and, thus, politics and treatment. Let’s remember that at least some of the 35 ME experts who signed the open letter to Secretary Sebelius felt they were being pressured by Suzanne Vernon—the scientific director of the CAA,  a member of the SEP and a member of the IOM committee—into changing their position. It is simply not believable that Suzanne Vernon does not view her being on the IOM panel as a benefit to her and/or the CAA because it gives her and the organization, without a doubt, more power in times of very little patient support and dwindling staff and contributions.

This is a woman who accepted compensation of about $138,000 per year in the last two years from a non-profit whose revenue was only about $1.2 million in 2011 and about $1.1 million in 2012 and that received a two-star rating due its financials. Kim McCleary was paid around $167,000 per year for those two years. The total cost to the non-profit is even higher than that because of payroll taxes and state disability and unemployment taxes, which also come out of the organization’s pocket book. So, just for the services of Suzanne Vernon and Kim McCleary in 2012 alone, the CAA paid about $305,000+ while having an income of under $1.1 million. In other words, this non-profit organization, which claims to aim for advancements in a disease that is ridiculously underfunded, spent more than a than a quarter of  its revenue on its two key employees, one of them being Suzanne Vernon. So, forgive me if I don’t believe that Suzanne Vernon is serving on the IOM committee out of the goodness of her heart.

Now, about that pressure signatories reportedly felt. Suzanne Vernon had this to say on the subject: “There is speculation that I asked them to rescind their signature. I did not ask anyone to rescind their signature or change their mind.” She said she was merely asking if the signatories still agreed with their expressed position. Again, this strikes me as insincere at best. Given that the email was triggered by merely one signatory changing her position (and not even officially withdrawing her signature), it would have made sense to ask Secretary Sebelius if she still wants to go forward with the IOM efforts since the majority of experts were against it and given the great tax-payer expense involved, but not to ask the experts if they wished to change their minds.

The email that Suzanne Vernon sent to the signatories is analogous to the following hypothetical: Let’s say a Democratic Congressman has stated that he or she is not going to vote party line and Nancy Pelosi sends an email to that Congressman asking if he or she still stands by his or her position: “If you have any misgivings about [your previously stated position]”, or feel that the party line should prevail, “[I] need to hear from you.” Seriously, could there be any doubt about the fact that this is not just a friendly “hello, just checking in,” but ever-so-slight pressure and that the support of the Democratic Party during the next primaries was seriously in jeopardy? I think not. So, how about when a member of the panel that will decide whether your next grant application will get approved (SEP) asked you whether you have changed your mind on a very contentious issue, a question that only makes sense as a suggestion that you do change your mind? No pressure to withdraw your signature? Really?

We still haven’t heard why the CAA is in favor of the IOM contract when pretty much all of the respected experts are not and when the patients have made it abundantly clear that they do not want the IOM contract to go forward. If an organization is so removed in its position from that of the group of people it purports to represent, is it too much to ask for a genuine explanation?

Still no word of comfort on why we should be confident that the “ME/CFS” IOM committee will do a better job than the GWI IOM committee.  GWI patients are outraged by the results of the first IOM contract on treatment. They were thrown under the bus by the committee. It seems that the CAA’s PR tactic continues to be to acknowledge the patients’ fears without addressing them. Vernon went from “while we understand ….” to “we believe it is in the patients [sic] best interest to continue …” She then states the following: “We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress.” This makes no sense for two reasons: 1. It certainly was not progress, but a huge step back, to involve the IOM in the case of GWI. 2. Why and how will an IOM disease definition generate more federal funding?

Seriously, a member of the GWI IOM committee, a panel that has done an abysmal job for GWI patients, is defending the need for an IOM committee for “ME/CFS!” This is, on its face, outlandish. It’s as if the fox is pretending that it wants only the best for the hens. I find it highly improper that, Suzanne Vernon, as a member of the IOM committee, would even get involved in that discussion. It is a conflict of interest.

And finally the “explanation” for why a research organization is interested in the disease definition:  “It is precisely because we are focused on research that case definition is important to us. … The diagnostic criteria is essential to advance research because it provides us with the disease-defining concepts – the core signs and symptoms – needed to identify and validate biomarkers and to provide evidence of treatment benefit.” This talking point was entirely predictable. At first glance this even makes sense, until you remember the GWI IOM disaster. The  GWI committee changed the name “Gulf War Illness” to the unrecognizable and offensive name “Chronic Multi-Symptom Illness,” a name that could not be less descriptive or more all-inclusive. The “treatments” the IOM committee report recommended for GWI—a physical illness—are antidepressants, Cognitive-Behavioral Therapy and Graded-Exercise Therapy. The report also suggested the same clinical interventions for “ME/CFS.” It is being reported by GWI researchers that vets are turned away at the VA now due to the changed name and broadened disease definition. Broadening the already overly inclusive definition of “ME/CFS”—something we can be sure will happen if the IOM is involved—will do the opposite of what Vernon claims the result of the IOM contract will be. It will make research less scientific and more meaningless.

Let’s keep in mind that the IOM contract will cost about $1 million of scarce government funding, when the experts have already settled on a very effective definition. Does anybody have confidence that this $1 million dollar contract will produce a better definition or advance the interests of the ME community more than spending the money on bio-medical research? Or is this just job security for a few folks?

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27 Responses to More Propaganda: Still no Explanation from CAA for Disagreeing with Experts and Patient Majority

  1. Thank you for explaining this so clearly, Jeannette. Who can believe anything Suzanne Vernon says now–she has been spinning the CAA line for so long everything she says rings hollow. Who can forget Vernon laughing at patient deaths …? Or Vernon promoting a study done by CDC with the Reeves criteria, reported by her friend Cort Johnson “Early life adverse events—abuse, neglect, long-term malnutrition—can really mess us up and change the architecture of the brain,”,5881.msg67368.html#msg67368 and who can forget the CAA promoting exercise as delivering “striking improvements” in people with “CFS”?

  2. Thanks for adding these examples, Patricia. The youtube video link doesn’t seem to work. Could you double-check that, please.

    • Teri says:

      Power, then Greed always corupt. Wreaks of cronism. We are going to have to organize, somehow. If we wait, and they come out with GET, AND CBT, we are going to be behind. Somebody with true knowledge has got to be apart of the IOM team, is it possible that is what shes doing there?

    • It appears that video is no longer available. I will find the link to where it was discussed on mecfsforums and post that, along with other examples.

    • Suzanne Vernon of CFIDS ASS laughs at patient “deaths” 4/18/2013,15912.msg149056.html#msg149056
      2/23/11–Suzanne Vernon, CAA Research Director, to the Wall Street Journal:

      Quote from Suzanne Vernon:
      “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”
      March, 2010: Suzanne Vernon in response to the negative XMRV studies, in her article,
      “Playing a Weak Hand Well”:

      Quote from Suzanne Vernon:
      “The PLoS ONE paper by Erlwein, et al, the Retrovirology paper by Groom, et al, and now the van Kuppeveld, et al, paper in BMJ all studied well-characterized patient cohorts that met accepted and widely used CFS case definition criteria.”
      (These papers used the “CDC” criteria, probably the Reeves definition, to choose their subjects, and did not find a retrovirus.)

      Link to thread on mecfsforums about the CAA

  3. PS: The author has been identified now in the CAA blog post. It is indeed Suzanne Vernon.

  4. Alex Young says:

    The CAA claim makes no sense. The stated aim is to improve research? How can a clinical definition do that? What it might do though is pave the way for broad clinical trials on broad patient groups, but not basic research on strictly defined patients. What might they be wanting to trial in a broad group? The only things I can think of are psychotherapies or psychotherapeutic agents.

  5. floydguy says:

    Thanks for the writeup. What really struck me is Vernon’s pitch that we “need to be at the table” with the government. It’s clear that it’s Vernon who “needs to be at the table” with the Feds. It might work out well for Vernon’s future and bank account but it really has had dismal results for patients over the last 30 years.

    Is there anyone out there who still believes the CAA is working in the best interests of the patient community?

  6. pat fero says:

    The CFSSEP is a not a standing group. Dr. Vernon may have been selected to be on a review panel just as Dr. Klimas or Dr. Jason or any other researcher we know. This would be more clear to us IF the review group members were listed on the Center for Scientific Review site as they used to be. The panels members are selected by the grant topics that come in for review. Because the panel is multidisciplinary and reviews grants for other “like” illnesses, the composition of members may be experts, but few with expertise in ME. IT IS A problem and not transparent at all. Lists were taken down when patients objected to a doctor from UK who had a past history of disbelieve in XMRV was selected for a panel that must have had several applications on XMRV research. Patients sought the reviewer out, sent many emails to her and to the Scientific Review Officer for the group. I am not saying it is our fault that the panel members selected each grant round are kept secret, but that is my recollection of what happened.

  7. oerganix says:

    Right on, Jeannette!

    The CAA/Suzanne Vernon do the “CAA cha-cha” — one step forward and two steps back. Usually, as in this big step back, the steps back are a lot bigger than the steps forward.

    The occasional step forward is only done to that when the steps backward are pointed out, they can try to divert attention by claiming good works in the tiny step forward.

    Even after she retired from CDC with her big pension, Vernon was still putting her name on Bill Reeve’s phony research. If we hadn’t already known that Kim McCleary was a government frontwoman, we’d have thought Vernon was a Trojan horse. But CAA knew exactly what they were doing when they hired her to be their very expensive “scientific advisor.”

    “Maintain status quo” (job security) should be their motto. Or “take us back to the good ‘ole days” when patients were more easily fooled into thinking the CAA was for us.

    Could you post the url for Patricia’s petition one more time? We need a lot more patients to sign.

  8. Laurel says:

    Very well said, Jeannette. Your grasp of the facts and skill in articulating the issues continues to amaze me. Thanks for being the voice of many who are too brainfogged to write anything!

  9. In the interest of fairness, three clarifications:

    1. Vernon is on the GWI (now CMI) committee. There is no way of knowing that she’ll be on the “ME/CFS” committee for sure. But if she wasn’t angling for it, one would think that she would have said so by now.

    2. The Special Emphasis Panel (SEP) meets several times a year and there are different reviewers each time. The committee doesn’t have permanent members. Suzanne Vernon has, to my knowledge, sat on the SEP several times in the past. So, when a grant application gets submitted, the submitting researcher may not know whether Vernon will be on the panel reviewing his or her particular grant. But the fact that there is even a chance for that means that I wouldn’t change my take on things as stated in my post one bit. And let’s remember that the bulk of her CDC research has been with Bill Reeves into the psycho-social aspects of the disease. How likely is somebody like that to approve bio-medical research?

    3. To be absolutely clear, I am not saying that Suzanne Vernon’s serving on the committee would be a conflict of interest (although I doubt she’d be the most qualified). I am saying that her so strongly supporting that there will be a committee is a conflict of interest. Of course, I would not consider it a conflict if our true experts were serving on such a committee, which hopefully will never come into existence

  10. Excellent essay, Jeannette. If anyone wants to read about one of the more important (and utterly deceptive) research projects Suzanne Vernon co-authored while at CDC, I discussed it here:

    This was the article that supposedly proved Bill Reeves’ new set of questionnaires (his “empirical definition”) could be used to identify patients who met the 1994 Fukuda definition. However, at most only ten patients in the group identified by the questionnaires met the Fukuda definition. The article should be recalled – the abstract and introduction inaccurately portray the results of the research.

    If Vernon truly represented the best interests of patients, she would have disavowed this article after she joined CAA. It’s not too late to do it now …

  11. PANDORA AND CAA ARE RECRUITING PEOPLE TO SERVE ON THE IOM COMMITTEE. Someone has just pointed out to me that while M.E. patients are busy signing the petition to HHS to Stop the IOM and Accept the CCC, some “advocates” are already suggesting who should be on the IOM committee. My informant asks not to be named, but (s)he has seen the form and the names have to be in by October 11. Patients need to be aware of what our so-called “advocacy” organizations are doing. They are double-crossing patients behind our backs! We must move very quickly if we want to fight this!

  12. I also just received this message from Tink B. She has given me permission to post it. ” I received an email from one of the advocates asking for my input on who should be on the IOM committee. I was shocked. Thought it was counter productive and was wondering is the rest of the patients were aware of it. It was obvious she wasn’t the only one who received the IOM letter, it was included in the email to me. Made me really wonder what the stand of the patients advocates really is. Are they with the CAA on this? Are they working behind the scenes and secretly behind our back on this while were are busy gathering signatures to stop the whole IOM thing?

    The letter was short notice, input needed to be given before Oct. 11. “

  13. I made this comment, awaiting approval, on Vernon’s post:
    “I generally agree with Carrie. You say that we need to support the IOM contract in order to have a seat at the table and have increased research funding. That doesn’t make any sense especially based on the history of HHS and this disease.

    Ian Lipkin pointed out that AIDS patients didn’t get any funding for research from NIH until they created a big scene and that’s why we haven’t gotten factual information and funding from HHS. We need to keep ratcheting up the pressure and complaints, not eliminate them.

    Unfortunately we are so sick that we can not do street theater and stage big protests like the AIDS patients. That’s why we need our healthy professionals like you to stand up loudly to HHS, but since you worked with Reeves on his victimization of patients and fake science, I guess I can’t hope to much. But Id really really like to be proved wrong.”

  14. Carrie says:

    Thank you for your coverage of this matter, Jeannette. You’ve articulately stated everything that has been on my mind in recent weeks.

    I stopped supporting the CFIDS Association of America years ago in part because their continuous campaigns to bleed money from disadvantaged CFS patients were outrageous given the CEO’s salary and the undeniable fact that the CFIDS Association of America was consistently selling us out.

    Maybe it’s time for a new national organization to take the place of the CFIDS Association of America—an organization that will serve our needs and speak up for us when we are getting shafted, an organization of watchdogs, not lapdogs, an organization that will unite the patient community instead of disenfranchising us, an organization that exists for the patient community and not for the sake of the organization.

    I’ve not seen one patient voice support online for the IOM contract. Not one. It seems we all understand this contract will be the death of government-funded CFS research or even any recognition of CFS beyond mental health definitions. Why does our so-called national organization not understand this?

    Suzanne Vernon wants us to sit down and go with the status quo. I hope patients will instead REVOLT! This may be our last chance before we are relegated so far out of the research community that we will never have a chance of getting a treatment or cure.

    • Julia Hugo Rachel says:

      I believe you are on point with your idea “Maybe it’s time for a new national organization to take the place of the CFIDS Association of America—an organization that will serve our needs and speak up for us when we are getting shafted, an organization of watchdogs, not lapdogs, an organization that will unite the patient community instead of disenfranchising us, an organization that exists for the patient community and not for the sake of the organization.” So far, an organization such as this has not been in force. We do not need to concern ourselves with “taking the place of the CFIDS/CAA organization”. What we need to focus on is an organization that will benefit patients and tackle all of the talking points you described above. Look for a national political campaign beginning in 2014 that will accomplish the needs you have stated. It is time for patients to be accommodated; instead of wildly abused, tapped out financially and continually herded through a tunnel of subterfuge. Patients have more power than they give themselves credit for. If an organization or center is not providing positive results; stop donating to and supporting that group.

  15. Anonymous says:

    Vernon will be speaking next month in my area

  16. Kathy D. says:

    Right on, Jeannette! How you can write such an incisive, pointed elucidation and critique of what the CFIDS Association and Suzanne Vernon are doing — with ME/CFS — is beyond my muddled brain.
    However, I cheer you on.
    I didn’t know this is what was recommended for GWI; this is outrageous — antidepressants, CBT, GET. Those poor veterans, and for the diagnosis to be used to be denied them VA benefits.
    That’s what I worry about with ME/CFS, that all this psychobabble will be used by the government and insurance companies to deny sufferers benefits. And don’t they want to do this now, when many in the government seek to cut back so-called entitlements, like disability coverage and health insurance, Medicare and Medicaid, while private insurers cut back coverage.
    We do need an organization that speaks and advocates for us, demanding research into causes, biomarkers and coming up with treatments. Many of us are too sick to go to D.C. and speak, lobby, sit-in, protest in and out of Congress. So, we need a plan and an alternative way of protesting. Can we email or Tweet en masse?
    Can folks access list-serves and send out that petition? If we could get thousands of signatures sent to D.C. and our local politicians, it would help.

  17. Ecoclimber says:

    Unfortunatley, the only way that anyone can stop this now is to seek an injunction against DHHS from carrying out the IOM contract.

  18. Julia Hugo Rachel says:

    Suzanne Vernon is dangerously close to crossing the lines on limitations of lobbying in a 501C3. At the very least, her smug letter is utterly unethical. The fact that she was Bill Reeves sidekick makes her ethos questionable at best. Ms. Vernon may have tightened her own noose with this behavior.

  19. Pingback: How Do You Win A Rigged Game? – Paradigm Change

  20. Amazingly strong blog post, Jeanette. Thank you.

  21. Pingback: Opening Pandora’s Box: PANDORA Cozies up to IOM | Thoughts About M.E.

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