CFIDS Association's position on the CDC...

Discussion in 'Fibromyalgia Main Forum' started by bjsmit1, Jul 1, 2009.

  1. bjsmit1

    bjsmit1 New Member

    I am writing this in response to those who have been critical of the CFIDS Association of America in the past (and present), for being too "cozy" with the CDC. Many have accused the CFIDS Association of not doing enough with regard to the CDC's many blunders with regard to CFS; the CAA has also been accused of being pro-CDC. I want to clear up any misunderstandings or confusion surrounding this subject.

    Approximately 10 years ago, Kim McCleary and the CFIDS Association were solely responsible for the investigation and discovery of $12.9 million that Congress had earmarked for CFS research. The CDC, however misappropriated these funds, and without the diligent efforts of McCleary and the CFIDS Association, this likely would never have been discovered. An audit by the GAO forced the CDC to “pay-back” the $12.9 million from 2000 through 2005, which produced higher quality research during that period.

    The boom in research during that period allowed for the CFS Computational Challenge (C^3), and culminated with 14 articles being published in the journal, Pharmacogenomics in early 2006. It should be noted that Dr. Suzanne Vernon, PhD (CAA’s Scientific Director), played a very key role in the research coming out of the CDC at that time. Coincidentally, since Vernon’s departure from the CDC, they have done no important CFS research, so you do the math. I think it is easy to see who was responsible for a significant amount of the meaningful outcomes that were produced…

    In November 2006, the CDC launched the CFS Public Awareness Campaign, and it appeared that they had learned their lesson. Unfortunately, we all know now that this is not the case. But at the time, it appeared that the CDC had finally gotten its act together. They are the largest and most resourceful entity in the world by far, extremely capable of performing the necessary research for CFS. I think some confuse the notion of attempting to get the CDC to increase the quality and quantity of work for the CFS patient population with being "cozy" with the CDC. This is not the case. The CAA was trying to leverage the most resourceful entity in the world to tackle CFS. If some other entity “XYZ” existed, and had the resources of the CDC, I’m sure the CAA would be knocking their door down for improved and increased research as well.

    Which brings me to my point. If none of what I have previously written does not convince those who discredit the CAA, I’m hoping this might help. At the CFSAC meeting in October 2008, Kim McCleary delivered an impassioned testimony about the gross mismanagement of the CFS Research Program at the CDC. McCleary described the pervasive lack of leadership by William Reeves of the CDC, as well as the blatant wasteful spending within Reeves’ CFS Research Program. McCleary described the lack of any meaningful research (both planned and performed) since the end of the “pay-back” period. In addition, McCleary questioned the close relationship between CDC’s CFS Research Program, and that of the Psychiatry Group at Emory University, which at the time, was chaired by Charles Nemeroff. Nemeroff had been receiving undisclosed payments of $1 million from pharmaceutical companies, and was under investigation. Finally, McCleary questioned the relationship between CDC’s CFS Program, and that of Abt Associates, who has been receiving multi-million dollar “sole-source” awards from the CDC since 1989, basically, “for paperwork”.

    The following url’s are videos of Kim McCleary’s CFSAC testimony, as well as a 3 part impromptu discussion that followed, until I was forced to stop recording…

    Kim McCleary's CFSAC Testimony (10/28/08):

    Part 1 of 3 -- Discussion Following McCleary's CFSAC Testimony:

    Part 2 of 3 -- Discussion Following McCleary's CFSAC Testimony:

    Part 3 of 3 -- Discussion Following McCleary's CFSAC Testimony:

    I hope some find this enlightening.

    Brian Smith

    [This Message was Edited on 07/01/2009]
  2. skeptik2

    skeptik2 Member

    I know you are saying the truth as you see it.

    It is not a matter of 'uncovering' the wrongdoing at the CDC.

    A national organization that receives patient's monies has the duty, the responsibility and the right to go above even the CFSAC, not just make speeches for years on end.

    The CAA has had ample years to do research that is meaningful and productive towards convincing the CDC that 'cfs' is really what it was first called by the CAA, which is CFIDS or Chronic Fatigue and Immune Dysfunction Syndrome.

    Where did the 'Immune Dysfunction" go, in the criteria the CDC uses to train physicians to diagnose this illness? Why did the CAA allow the CDC to 'displace' the definition of the real disease, which is M.E. or Myalgic Encephalomyelopathy.

    Why hasn't the CAA called for a Congressional Inquiry years ago? The malfeasance has been ongoing and going and going. Why haven't the previous researchers who know the wrong actions of the CDC raised their voices for the patients? Why hasn't the CAA helped them do so?

    Why did the CAA take $5 MILLION dollars from the CDC and help them spread 'awareness' of an illness the CDC says has 'no biological basis'? (See the CDC's website about 'cfs'.)

    The CDC may be 'the most important entity in the world' in some ways, but they made an egregarious mistake back in 1988 when they had a committee name this disease. They knew nothing about it, had done no studies, no research, and had no foundation upon which to base their senseless name. I don't care how 'powerful' they are; I intend to bring them down.

    I dedicate the rest of my life to this project. I will keep trying until I am successful. The CAA can do whatever they want with the CDC. I will not. They have been and are still being deceitful and willfully wrong about our real illness: M.E.

    If the CAA can see where the emails to the CDC end up, and then follow up on the actions that need to be taken to get Bill Reeves fired from the stupid, unproductive program that is now threatening to endanger our lives even further by adopting the UKs "NICE" guidelines of CBT and GET, all well and good. I shall be so glad when that is accomplished.

    I will not be satisfied until the disease M.E. is taken up and the over 5,000 studies that show serious abnormalities in patients are reviewed by the appropriate department at the NIH. That would be Neurology and/or Immunology.

    Just today BMC/Neurology published an article about 3 patients who received methrotrexate and all recovered to normal for different periods of time before relapsing. Their focus was on patient's B-cells, and I'm not medically sophisticated enough to explain it thoroughly. My point is: there is something very wrong with the immune system of patients with M.E.

    Why hasn't the CAA found and published these types of scientific articles over the past 15 years? Yes, I know they have funded some, but somehow, they always just miss hitting the nail on the head.

    I have a problem with .orgs that take money from patients for years and years and the patients rarely see the benefits; .orgs can be so self-perpetuating, I suppose because if cures were found, the unemployment rate would go even higher than it is now. (They would be out of business).

    There are other orgs who do not have paid employees; I think they are doing better research and using the patient's donations to better use; I may be wrong, and only time will tell, I suppose.

    I have met Kim McCleary. She is a wonderful, kind and empathetic person, and I hope Suzanne Vernon will be of magnificient help to the CAA. She is certainly one of the most brilliant researchers in the field. I judge results, and to date I have not really seen any, only a more and more demeaning and degrading load of crud coming out the the CDC, so the CAA's impact has not been fruitful to date, IMHO.

    I do not want people who believe in the CAA to change their minds, at all. I do want patients to have a choice in whatever actions they, with their limited energy, can do. If the letters to the CDC bring about serious and meaningful change, I will be very glad for every one of us.

    bjsmit1, you told me you had no 'interest' in your furthering the CAA's cause, but someone told me you were on their Board; is this true?

    Thank you for the great discussion...


  3. skeptik2

    skeptik2 Member

    Good for you!

    Yes, I get BMC reports regularly in various medical topics I think are related to M.E. (Note, 'cfs' is non-existent in my view; the true name for our disease is M.E.)

    I'll look at your thread, hope others do too; if you don't get a lot of responses, maybe make the title more provacative, like, "Methrotrexate for CFS?" LOL, gotta get their attention, they have so little energy.

  4. bjsmit1

    bjsmit1 New Member


    I don't have much time right now to answer all of your questions (doctor appointment...), but I will answer in more detail as soon as I can. In the meantime, I'll try to provide additional insight

    I am on the CAA's Board of Directors. I stated so in my 1st or 2nd post in this forum, because I wanted to provide full disclosure. I apologize for not adding it to all of my posts -- sometimes I don't even think about it. I definitely wasn't trying to hide it.

    With that being said, every post I make on message boards, etc. are done individually by me, independent of the CAA. I've said it before, but I guess its worth reiterating -- Any and all views I express are solely mine, and do not reflect those of the CFIDS Association. In fact if I wasn't involved with the CAA, I would most likely be making similar posts to the ones I have in the past.

    With regard to furthering any cause or agenda, I am referring to the collective cause of the entire CFS patient population. I'm not saying I disagree with the CAA's agenda, but again, if i were not involved with the CFIDS Association, I believe I still would have the same views.

    I apologize for such an incomplete answer. You obviously put a lot of thought and time into your post, so I don't want to insult you by providing a half-ass one right now. Like I said, I will address the rest of your questions/concerns when I have more time.

    Again, thank you for your enthusiasm and for stepping up to "do your part". I think anyone with CFS who is capable should try to give back, and I thank you for that.

    Thanks in advance for your patience, and I look forward to discussing this with you further.

    Brian Smith
  5. illroy

    illroy Member

    Thank you for your efforts in the battles against CFS. I wonder if you would answer some questions.

    How long have you been on the Board of Directors? Could you describe how it functions, such as meetings, attendance, frequency, etc.? What is the process for people going on and off the board? Also, what is your source(s) for the history of advocacy? Thanks.


  6. illroy

    illroy Member


    Also, how many members does the CAA have now?

  7. jasminetee

    jasminetee Member

    I agree with Skeptik2.

    I appreciate your right to your opinion Brian and personally I am encouraged by the CAA's new direction but I need to see results of the kind Skeptik2 is addressing.

  8. bjsmit1

    bjsmit1 New Member

    Hey guys,

    Sorry for the late response -- the 1 year anniversary of my father's death was a few days ago, and I've been dealing with some stuff...

    You should be able to get all the answers to your questions at the following url:

    You might have to click on some of the links, but everything about the CAA is easily found in about 5 minutes.

    Thanks for the discussion -- I'm glad we're able to have debates, even if we disagree, and not have it become petty or personal; unfortunately, I think it is kind of rare...

    Brian Smith
  9. Andrew111

    Andrew111 Member

    Hi Brian. Thanks for pointing these things out.

    Some of us didn't believe the CDC had mended their ways after the investigation. We thought they were just going through the motions, doing only enough to keep the heat off. And so we saw CAA's cooperative relationship with them as a loss of vision regarding what a patient advocacy group should be doing.

    But what's done is done, and I'm glad you are adjusting your strategy. I just hope you don't think strong language will turn them around. Sure, you need to go on record as Kim McCleary did. But the culture at CDC is one that doesn't respond to humanitarian or professionalism appeals when it comes to CFS/ME.