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Article: Guilty!.... By Association? Taking Our Measure

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 25, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team Senior Member

  2. SpecialK82

    SpecialK82 Ohio, USA

    Ohio, USA
    Thank you for your research and setting the record straight Cort :thumbsup:

    Let's use our collective power and energy to fight through government bureaucracies and to educate the masses, there is plenty of work to go around, so more power to whomever would like to take this on.

    I dont care if the CAA, the WPI, the NIH or the Republic of China comes up with answers for us I just want to get well. And I will support anyone that is working towards that end.
  3. frenchtulip

    frenchtulip Senior Member

    Thank you, Cort. You are always the voice of reason and fairness. Your careful research is much appreciated!
  4. Cort

    Cort Phoenix Rising Founder

    At heart we all want the same thing. If someone makes a mistake, I say forget about it and move on...We're only human. Let's give each of us a break -recommit to the main goal - healthy, happy, active lives :)Retro eek::eek:) and move on...(to China if need be :cool::cool:)
  5. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Sorry to be a Debbie Downer here, but I really didn't like the 2009 paper mentioned. It conflated chronic fatigue, prolonged fatigue and "CFS" by saying they were all one phenotype with slight differences. It said that the Reeves criteria should be used and said Fukuda didn't need to be revised (i guess as resistance to CCC). It said depression was an integral part of ME, not a secondary affect. Pretty bad paper.

    I don't know enough about science to really look at her non-psyciatric papers.

    I still think that her failure to come out strongly against the Reeves Criteria (on which she has her name) is a really huge problem that really overshadows her other contributions.

  6. Cort

    Cort Phoenix Rising Founder

    That's fine Justin and I understand that. Again - my assertion is that you should look at a persons broad body of work...not a single paper and certainly not a single paper that was basically done by a large group ie the International Chronic Fatigue Syndrome Study Group - which she was a part of.

    Let me give you some quotes from the abstracts of her other studies. They will probably quiet your mind a bit.

    Demonstrating evidence for latent viral infection and possibly targeting parts of the immune system for therapy

    This study finds gene activity that could be causing the complement activation after exercise in CFS. With the spinal fluid study out recently this means we may evidence of complement activation in three areas; spinal fluid, genes and blood. Of course much more work has to be done.

    B-cell dysfunction (think EBV) and antibody mediated NK cell modulation of T-cells (antibodies are screwing up NK cells which are then screwing up T cells). CD 19 cells could be at the heart of CFS!

    This study suggests that temporarily reducing cortisol levels sharply could snap the HPA axis back into proper functioning.

    You realize I could go on and on with this -give you 10 or fifteen studies to the one you pointed out. Some studies did not have positive results but they were almost all - except for the one you picked out and the ED - 'good ' subjects. Throw in the work that she's done with the CAA and you have a slam dunk in my opinion.
  7. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    I don't really care about the papers she co-authored with Reeves when she was at the CDC. After all, she chose to leave the CDC and join the CFIDS association. That was then, this is now.

    But it's "now" I have a problem with. In this week's WSJ article about the study finding unique proteins in the spinal fluid of ME/CFS patients, Suzanne Vernon is quoted as saying “It’s difficult to have a diagnostic test based on spinal fluid. You can’t just go poking everyone in the spine.” That bugged the heck out of me. I know that lumbar punctures aren't something to take lightly, but they are used as a diagnostic tool for serious neurological diseases, such as multiple sclerosis. Why not for ME/CFS? I would welcome a biomarker we could use for a diagnostic test, and I was disappointed that Suzanne Vernon seemed to wet-blanket the idea. I wish she'd spoken of the importance of biomarkers, or pointed out that the study shows CNS involvement, or that "authorities" can quit saying there's no medical evidence of disease. Or SOMETHING supportive.
  8. Cort

    Cort Phoenix Rising Founder

    That was an unfortunate way to end that article but if you look at her analysis of that paper you'll see that she suggests that you could start looking for the counterparts of those proteins (I guess?) in the blood samples at the Biobank. I don't know how you do that but did she did make that suggestion - so I suppose she is thinking about and maybe even working on an easier blood test (?)
  9. Enid

    Enid Senior Member

    Thanks again Cort for another reasoned analysis - then/now.
  10. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    Cort, did you see what people wrote there about your statements on the good doctor's blog?

    I still want to know exactly how much money the CAA received from the government contracts and exactly what it was used for, including "administrative expenses".

    Why hasn't Susan Vernon spoken out strongly and publicly about what has always been going on behind the scenes at the CDC including the prejudicial attitudes towards us, right from the beginning of her very well paid employment at the CAA?

    Why hasn't she or anybody else at the CAA spoken out about what CBS wrote about in another thread -- that the government agencies are scared that XMRV will prove causative?

    Why is the CAA so incredibly slow in issuing an RFA after more than two years without one, while sitting on millions of dollars in earmarked research money?

    Why are so many vital questions continuously unanswered?
  11. moigo


    If Dr. Vernon now regards her endorsement of the "Empirical Definition" as a "mistake" she should say as much and push for an accurate case definition. We live with this "mistake".:( "Forget about it and move on"? To borrow a Utah Phillips line, "The past didn't go anywhere."
  12. Sean

    Sean Senior Member

    I would be sceptical of any ME/CFS paper that has Ian Hickie as an author, let alone the lead author. His views are not fundamentally different from Wessely, et al, and he is one of he most influential psychs in Australia, who has his name on some of the main papers in the MF/CFS world, including definition papers. But he has managed to keep a relatively low profile in the debate, though most longer term Australian patients will know of him. I strongly suspect he was the 'intellectual' driving force behind the appallingly biased first draft of the Australian Clinical Guidelines (1997?), which was basically a straight lift from the Wessely school, and which was seriously toned down and modified for the final and much more reasonable version (2003?) after loud and pointed objections.

    In fairness to Hickie, he was a major force behind the national Beyond Blue project here for increasing the awareness of and support for depressive illnesses, which is a good thing, if handled properly.
  13. Bob


    England (south coast)
    I'm not defending anyone here... I live in the UK, and so I don't have much of an insight into the CAA... But journalists often take a quote out of context, so it might be helpful to get a statement from Vernon on her opinion of the study. I'm only saying that because I know what the media are like, and often go out of their way to print something controversial, rather than representing the truth.

    I think I read that the authors of the protein study have no intention of suggesting that everyone with ME should have a lumbar puncture, but they are going to use their initial findings of proteins in the spinal fluid to look for the same proteins in the blood of ME & Lupus patients. If any of those spinal fluid proteins are floating around in our blood, then they can use those as a very convenient biological marker. They say that's the next step of their research.
  14. Cort

    Cort Phoenix Rising Founder

    Actually it did. The CAA has repeatedly disavowed us of the ED.

  15. Cort

    Cort Phoenix Rising Founder

    Dr. Vernon said as much.

  16. Cort

    Cort Phoenix Rising Founder

    This particular article was supposed to answer any questions other than whether Dr. Vernon is being of service to the ME/CFS Community...

    I can't answer for her but I think Dr. Vernon's work over the past few years speaks for itself. I'm more interested in the studies she's funding, the research she's doing. the researchers she's brought into this field and the Research Network and BioBank she's put together than in her making personal attacks on her colleagues - something that would probably viewed with dismay by many in the research community - thus undercutting her support.

    Working in a professional manner that wins the trust of her peers in the research community is important. She been able to bring many new researchers to the field at the Banbury Conference (35% of whom had never studied CFS), in the studies the CAA is funding and in the grants she applied for ( seven institutions participated in the autoimmune grants). She's shown her ability to make connections outside the field.

    This probably also shows up in the CAA's stellar list of candidates for the CFSAC community including Dr. Lipkin, Dr. Singh and Dr Holmberg and a few others.

    Acting like that may not be as catchy or compelling to the CFS community but I think its what we need and its effective.
  17. leaves

    leaves Senior Member

    I know you do, and that's fine. But this is not Corts Assiciation of America. It's a patients organization. And at this point the big majority of the patients is unsatisfied with the direction and leadership of the CAA.
  18. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    I also tend to take the "What have you done for me lately?" approach.

    It's not Suzanne Vernon I have a big problem with. Her comment in the WSJ blog I thought came off sounding dopey - although I said at the time (and I'll say it again) I get what she was trying to say - that everyone would prefer a less-invasive test to be available for routine diagnostics, and hopefully we can get one. But the words in which it was expressed were kind of condescending. Her comments in other articles about the Schutzer study were better.

    If it turns out we can't get a reliable blood test for ME/CFS in the near future, and we have to undergo lumbar puncture for confirmation of diagnosis for a while - or for all time - so be it. It's still about a billion times better than having no accepted diagnostic test.

    It's Kim McCleary and her comments to the press about PACE that I consider beyond the pale, and to be in direct contravention to patients' interests.
  19. jspotila

    jspotila Senior Member

    Suzanne was absolutely instrumental in work such as the Light study and Broderick's systems modeling (which is now funding at $4.5 million by the NIH/DoD). Her contributions to the CFS field are extraordinary, not only in terms of the Association's research program but in serving as a resource to other researchers. We have asked her to be an ambassador to researchers one or two steps removed from CFS research, people who might be interested but have yet to get involved. She has shared her expertise with NIH, the XMRV task force, and a number of research groups. And she has always conducted herself with professionalism and drive. As far as the WSJ quote goes, that was one quote from a 30 minute interview and certainly Suzanne did not choose the quote that was used. This is common practice, as we all know.

    It helps to remember to look at a person's body of work, instead of painting with broad brush strokes and making assumptions based on one or two pieces of evidence. Certainly Dr. Mikovits has given her share of interviews, and there have been numerous threads here where the majority have urged that readers not look at quotes out of context. This is only fair. Cort rightly points to the work of Drs. Jason, Klimas and Friedberg - and no one here should question their dedication to helping people with CFS, despite the stress-related aspects of some of their studies. It's easy to make a snap judgment in the moment. It is more difficult to look at the body of evidence, and not let preconceptions color our evalutions.
  20. garcia

    garcia Aristocrat Extraordinaire

    I agree. I see this article as a diversion.

    The issue is the CAA and how it has failed and is continuing to fail patients. No amount of PR or Spin will cover up that fact.

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