CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

I know this for a fact, but can’t disclose my source:

The CFIDS Association of America (“CAA”) has contacted at least some, maybe all, of the 35 signatories of the letter addressed to the HHS regarding the adoption of the CCC asking them to withdraw their endorsement of the Canadian Consensus Criteria (“CCC”). Also, Suzanne Vernon/the CAA is a beneficiary of the IOM contract. The CAA sent their requests yesterday and asked the signatories to comply by noon today.

This is puzzling not only because it is directly and brazenly adverse to the patients’ interest, but also because the CAA claims to be purely a research organization now and not an advocacy group anymore. Yeah, right. And the deadline: I mean, really?!

Ms. Vernon’s involvement with the IOM contract is a blatant conflict of interest in asking the signatories to reverse course.

I have to say: It would be hard for me to be more disgusted at this point.

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30 Responses to CFIDS Association Asking Signatories to Withdraw Endorsement of CCC

  1. Oh my God!

    Very few of the underhanded tricks and abuses of patients surprise me anymore, but I have to say that, if this is true, and I believe you that it is true, that I am floored by this completely scummy action by CAA. They’ve done some really bad stuff in the past, but I was hoping they were gradually getting better; and yesterday, on Jennie Spotila’s blog I even gave them credit for the progress I thought they had made in the past year. They have absolutely no shame or conscience.

  2. Laurel says:

    The CAA was teetering on the brink, but now they are dead to me. It’s completely outrageous!

  3. oerganix says:

    It’s not really puzzling. Vernon was a Bill Reeves sidekick for decades. IF the CAA were really on the patients’ side, she would be considered a Trojan Horse in that organization.

    But since they ran out the original founder, they have NOT been on the side of patients, so this development is no surprise.

    I hope you’ll be able to share your source, but thanks for the info just the same. Appreciate it!

    • To make that clearer for those who don’t know, Suzanne Vernon worked FOR Reeves at CDC for years before joining the CFIDS Assoc. of America with a six-digit salary. She is a co-author on the infamous Wichita population studies where Reeves claimed his new questionnaires “operationalized” – I.e., made easy to use – the Fukuda (1994) definition, when they actually fell much closer to the British Oxford (psychiatric) definition.

      You should also be aware of the role James Jones plays as CDC’s actual “expert” on “CFS” – not Unger. He has been in charge of physician education on CFS for about a decade now at CDC. If anyone here lived in Denver in the 1990s, you might recognize him as the pediatrician who was best buddies with Steve Straus – went along with CEBV when THAT was Straus’s conclusion – switched to “all in their heads” when Straus did – except that Jones, unlike Straus, was actually practicing medicine in Denver and did incalculable harm to children and young people afflicted with this disease.

      I had hopes for new leadership at the CAA, but I see their policy of “compromising” with people who will never compromise on any important issue remains firmly in place. Too bad.

  4. Sasha says:

    Hi Jeanette – we’re having some discussion on Phoenix Rising about Jennie Spotila’s info about the letter not asking experts to change their position, but rather to state whether they still endorse the CCC following the latest HHS email about the IOM. Don’t know if you would like to chip in there/clarify here.

    Thanks for the heads-up on email, either way – it’s good to keep up with this stuff. Developments are happening very fast.

    • hi sasha,

      my response to jennie’s point that asking IF they changed their mind is different than asking them TO change their mind was this:

      I respectfully disagree, Jennie. Technically it’s different. Yes. But it’s not different in spirit. Why would anybody think that the signatories changed their mind just days after the letter without any change in circumstances? Makes no sense. It’s pressure being applied hoping somebody will flinch and it will all unravel from there. And that’s exactly how it is perceived by the signatories, which is probably why it was reported to me the way it was.

      Being lawyers, we can argue about words. But I believe the substance of their “outreach” is quite clear.

  5. Sasha says:

    Thanks, Jeanette – although personally I think the difference is more than technical, I agree that it’s a very volatile and fast-moving situation on an extremely important issue. Thanks for your vigilance on this.

    • I do believe in the notion that language matters and that its interpretation needs to done carefully. But this has to be seen in the context of a lot of events and actions taken or not taken by the CAA over the years. There is a whole lot of context here and that changes what the plain words say.

      The CAA is a quite powerful organization with its government ties and government money. Being pressured by it, regardless of how the pressure is worded, is intended to have an effect. Nobody will convince me otherwise. I grew up in East Germany. I am very familiar with subtle pressure and how powerful it is.

  6. Donna Richburg says:

    One word: Disgusting.

  7. JohnnyD says:

    It seems to me the 35 experts were unequivocal in their adoption of the CCC and calling on HHS to retract the contract. A more appropriate question would have been asking the same question of HHS. Have _they_ had a change in heart. After all, it is the patients plus the experts that are now in open revolt. An unprecedented situation. IMO.

    • i totally agree, johnny: they should have asked HHS if they changed their mind in light of the expert letter.

      • The argument that the CAA wanted to check with the experts whether they still stand by their open letter since it “crossed” with the HHS IOM announcement is disingenuous because, if memory serves (a big if), the open letter came out after the HHS announcement. The experts would have had several hours to change their minds had they wanted to or to at least decide to talk it over again before releasing it. Instead, the open letter was published despite the HHS announcement.

        Everybody, ask yourself: As JohnnyD said, wouldn’t it have been a lot more appropriate for the CAA to confirm with HHS whether THEY stand by their IOM contract in light of the experts agreeing on a definition and begging HHS not to go forward with the IOM contract? That would just be logical. And more importantly, that is what every patient advocacy group who at least wants to try to avoid being viewed as co-opted would have done. And ideally, a patient advocacy group would be concerned with more than just appearances. It would actually advocate for patients. There is no way the CAA can legitimately claim to have done that here.

  8. Jeannette, thank you for your courage in revealing this. I know you are most likely experiencing a lot of pressure by the CAA and their friends to keep silent or to withdraw your article. The CAA and other “patient organizations”(See,17814.0.html ) have now made it abundantly clear that they are obstacles to M.E. patients getting real research and effective treatment. What will patients do about this? Will they continue to close their eyes and hope for the best, since this has worked so well (NOT) for the past 25 years)? Or will patients realize that if they want progress with the disease they must speak up for themselves?
    – Patricia Carter

  9. Anonymous says:

    Great point. I just posted on the CAA, “Jennie Spotila has confirmed seeing the letter where you asked our experts if they still had the same position to adopt the CCC and not give IOM the contract. A good point around the web is that it would have been more appropriate for you to have instead sent a letter to HHS asking them if they still wanted to award the contract to HHS when 35 of our experts said not to and to adopt the CCC. I hope you will change your position and add your voice to those of our experts, rather than working against them.”

  10. leelaplay says:

    Great point. I just posted on the CAA, “Jennie Spotila has confirmed seeing the letter where you asked our experts if they still had the same position to adopt the CCC and not give IOM the contract. A good point around the web is that it would have been more appropriate for you to have instead sent a letter to HHS asking them if they still wanted to award the contract to IOM when 35 of our experts said not to and to adopt the CCC. I hope you will change your position and add your voice to those of our experts, rather than working against them.”

  11. Otis says:

    Thanks for the info!

    On the 23th, the IOM contract was announced.

    That same day the CAA that wrote a fairly long and definitely convoluted blog post that boiled down to it supporting the IOM contract and a rather open-ended process that sounds like CDC sound bites. They say “The CFIDS Association believes that any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria.” So before the letter from our 35 heroes was made public the CCC was being judged as not good sufficient by the CAA.

    Later on the 23rd the letter is made public.

    And now we are hearing that the 35 that were willing to take a stand for us are getting bothered by the CAA. I believe our heroes took a stand for the long haul. I’m sure they considered getting pressure from Sebelius herself so I don’t think they are going to back down from a passive-aggressive crap from the CAA. However, a good number of the signatories have received CAA funding and I’m sure there was a veiled threat of “no more money for you EVER if you don’t change your mind”. I have faith that won’t matter either because I truly believe that letter was about what doing right vs. doing wrong and the right way of doing things vs. the wrong way of doing things.


  12. Nikki says:

    Do we suffers of this disease not deserve any opinion or voice!xx

  13. Kathy D. says:

    Here, I skip a few days of checking in and all hell breaks loose. To me, the CAA lost its principles a long time ago. To pressure the 35 signatories goes over the edge, and is totally inappropriate. To disagree is one thing; the CAA has the right to do that. But to pressure the others in such a heavy handed fashion is not right. And, true, the threat of withdrawing funding is hanging over the heads of anyone who has received their money.
    I hope everyone can stand up to this pressure.
    And, the part about Suzanne Vernon benefiting from the IOM contract! Conflict of interest! So blatant it’s astounding.
    Wonder what will happen next. This would be comical if it weren’t our health and that of millions of people that’s involved — research, treatment, etc.

  14. Rachel says:

    This is not surprising. The CFIDS association gets a lot of it’s funding from the government. It has been acting against patients interests for years.

    I am a member of the CFIDs Foundation which is another ME/CFS group which has been speaking against the CFIDS association for years.
    I am so glad you have spoken up too Jeanette.

    There are more bad things they have done in the past but I’m too tired to make a list and there’s no point really. This one action is bad enough.

  15. Gretchen Thompson says:

    Beyond disgusted! Could someone tell me what is Vernon’s salary?? She seems like a blood sucker, probably making a huge salary from the suffering of all of us with ME/CFS. I feel that we are left out, all alone with this horrible disease, just struggling by as best we can. How can we get attention like the sufferers with HIV/AIDS? Until that happens, I have completely given up all hope of getting help from our medical healthcare industry. I only wish we were strong enough to have a march on Washington…….perhaps on crutches and in wheelchairs. That is our only chance of getting help from our government. All else is just a waste of our time and energy. Going to those meetings in Washington have not accomplished anything. They do not want to spend any money on research to help us and have done everything possible throughout the years to see that there is no funding for this disease. Who is ready for a march on Washington?

  16. Gretchen Thompson says:

    Right! I agree that biomarkers and definition are crucial. How can it be that we do not have a suitable, respectable name after all these years? The ignominy of CFS is disgraceful and has left us with an utter lack of any kind of respect from the medical industrial complex.

    I was nearly killed by GET & CBT…..I do not believe I would be as incapacitated today were I not so abused at the beginning by these “treatments” which left me bed bound for months. The most important thing I tell anyone at the start of this illness is to immediately stop pushing yourself. The only hope of recovery lies in stopping the push, crash cycle. But, we are made to feel lazy and unwilling to accept treatment. Why are they not accepting the two day exercise test as a diagnosis?…this is definitive! Why is Vernon not fighting for this? Too busy cashing those six figure checks and schmoozing at funded conferences that accomplish nothing. I lived in D.C. & my daughter is a physician from Georgetown, so I know how this whole system works. It is not a pretty picture and is very hard for a conscientious doctor to contend with.

    You might tell from my tone that I am bitter and disgusted. I sincerely believe that a march on Washington would get more attention. I am serious. Nothing else has really helped us after all these years. We need to Act Up for ourselves. We need to rock the boat to get attention. I am ready to start strategizing a plan of action. First, we need to get press attention in a big way.

    We need to start fighting for ourselves right now, especially while medical care is all the big news.
    Who is willing to help in this effort? I truly believe it is our only real hope.

  17. Thanks to floydguy for elsewhere noting that Vernon and Fred Friedberg are on the IOM’s committee to define “Chronic Multisystem Illness” aka GWI.

  18. Kathy D. says:

    I am for a March on Washington and whatever tactics ACT-UP used to get HIV/AIDS research and treatment going at full throttle. However, I wouldn’t be able to go anywhere, the problem with this darned disease.
    However, some people could go to Washington. Maybe others could go to their local Congress members’ offices. Sit-ins would help if we could do them, press conferences, same thing.
    But can’t someone get a petition campaign going online with links to all of the right offices and departments. I have a feeling that online petitions have been done, but maybe we could do it again somehow.
    I get email petitions to sign all of the time on various issues, can’t we do it, too?

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