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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. Cort

    Cort Phoenix Rising Founder

    Yes she does conduct research herself. Check out the page and a half of research I posted above. My question is why are you willing to give this quote from 2006 more weight than years of research and now years of public work with CAA?

    Here's a link to some of her public thoughts on research. Note that she highlights infections.

    Here are some of the papers she published in 2008.

    • Vollmer-Conna U, Piraino BF, Cameron B, Davenport T, Hickie I, Wakefield D, Lloyd AR; Dubbo Infection Outcomes Study Group (Dunckley H, Geczy A, Harris R, Khanna R, Marmion B, Rawlinson B, Reeves WC, Vernon S). Cytokine polymorphisms have a synergistic effect on severity of the acute sickness response to infection. Clin Infect Dis. 2008 Dec 1;47(11):1418-25.
    • Bolshin C, Aspler AL, Vernon SD, Broderick G. Evidence of inflammatory immune signaling in chronic fatigue syndrome. Behav Brain Funct. 2008 Sep 26;4:44.
    • Fuite J, Vernon SD, Broderick G. Neuroendocrine and immune network re-modeling in chronic fatigue syndrome: An exploratory analysis. Genomics. 2008 Sep 30. [Epub ahead of print].
    • Presson A, Sobel E, Papp J, Whistler T, Rajeevan MS, Reeves WC, Vernon SD, Horvath S. A systems genetic analysis implicates FOXN1 in chronic fatigue syndrome. BMC Syst Biol. 2008 Nov 6;2(1):95. [Epub ahead of print]
    • Sorensen B, Jones JF, Vernon SD, Rajeevan M. Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome. Mol Med. 2008 Nov 16. [Epub ahead of print]

    But, but, but....haven't I presented both hers and the CAA's position two times in this thread? Here it is from the FAQ section

    Her position as a co-author/collaborator in those studies will give her arguments even more weight than other critics. In particular, she could disavow any connection between psychological abuse and CFS that was suggested by such CDC research. Surely you agree with me here, at least... Wouldn't it be great if she did this?

    Of course. My recollection is that the CAA came down hard on the sexual abuse studies.

    She has...She's pointed out questionable cohorts throughout - that's been one of her main points.

    I think you're right - the FAQ's page came out in response to patient queries about various topics and they clarified issues - or least put them out in front for everyone to see. I kind of think that the fact that they've never funded a study using the ED says something and that they focused on the Canadian Criteria for their latest study says something as well. I also think it says something that they hosted an entire webinar on Definitions lead by Lenny Jason - the most virulent critic of the ED there is. Would they have done that if Dr. Vernon was a secret ED admirer as you worry about? My guess is no....If you look at the pattern - public statements, unwillingess to use the ED, hosting a webinar put on the by the chief critic of the ED, I think you have a pretty clear indication of where the CAA stands.

    I think the same is true regarding research. It may be that Dr. Vernon believes that certain aspects of the stress response are involved. I absolutely believe that. I think the weight of evidence suggests abnormal sympathetic/parasympathetic nervous system and HPA axis dysfunction is pretty darn strong. I think abnormal autonomic nervous system activity could account for alot of symptoms in CFS.....and I think alot of researchers agree with that. Do I think HPA axis problems CAUSE CFS - no, I don't think at all - I think the evidence is way too weak. Do I think infections cause CFS? Absolutely I do...I think or a substantial number of patients they are a primary cause of CFS.

    If you look at Dr. Vernon's take on CFS research I think you'll find that the CAA is primarily interested in post-exertional malaise, pathogens (XMRV, EBV, gut flora), the vascular system. receptor functioning and the brain.

    If you think Dr. Vernon is going to throw allostatic stress in there - a research focus, I remind you, that no one except the CDC has picked up....I encourage you to ask her. I know the topic is important to you but its possible that she might not think the topic is an important one given that in the research field its basically a dead topic now. The same is true to some exent with the Empirical Definition -no one except the CDC has used it...not one other group. Neither of those two have caught hold to any degree.

    It's fine if he was...but if that did happen then it was the CAA that brought him in wasn't it? And Suzanne Vernon does have ultimate responsibility for the Biobank does she not? So if her Biobank has a good selection criteria I think its only fair to give her credit for that (rather than implying that, well, it was just Lenny Jason anyway).

    I see your point but I think you're reaching a bit..The sentence simply stated the symptoms were psychiatrically unexplained -which means to me - that they couldn't be explained psychiatrically. If he was trying to make a different I think he probably lost a substantial number of people.

    Of course she did. She and other members referred to him as the Dictator. The CAA went after the CDC with a vengeance after Dr. Vernon joined them. Its all there. I do agree that what the CAA is missing if evocative advocacy - evocative presentation. They're very poor at rallying the patients or driving a cause. They're very tentative in the advocacy area and as I pointed out in my summary - they've made mistakes.

    Since most of the their positions are the same as the patients at large (no ED, no more CBT, focus on pathophysiological research, more research funding., more focus on pathogens) if they could just let their hair down I think they would do themselves and everyone else a big favor. Here's them on the CDC.

    Here's testimony

    A summary

    Here's Kim McCleary on the CDC program

    I hope some of the above will help.
  2. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    I support the excellent points made by Justin and Dr. Yes in this thread. Id like to make two more.

    1. Cort, thanks for pointing out the ways in which the CAA has distanced itself from the Empirical Definition. I wish the CAA would go a step further and end two troubling practices: distributing educational materials that endorse that definition and legitimizing it in comments to the media.

    If Dr. Vernon has truly reversed her position on the criteria she co-authored, why does she tolerate the Association distributing pamphlets like this one? The Patient Brochure says, "More than 4 million people in the United States have chronic fatigue syndrome (CFS)..." The figure 4 million can only be obtained by applying the Reeves-Vernon-Unger Criteria (Empirical Definition).

    Furthermore, what was Dr. Vernons reaction to Kim McClearys remarks to the media about the PACE study? CNN reported on 2/18, McCleary said national estimates put the number of Americans with CFS at 1 million to 4 million. Again, McClearys statement implies that the Reeves-Vernon-Unger Criteria are a valid means of determining who has CFS, which they are not.

    Did Dr. Vernon support McCleary stating that 4 million Americans have CFS, a figure that folds in large numbers of depressed people who dont suffer from any medical disease? If so, how can Vernon argue that she no longer endorses the ideology that gave rise to the paper she co-wrote with Reeves?

    2. Cort, youve said a couple times that the CAA Biobank selects patients based on the Canadian Consensus Criteria. This is not the case.

    In June, jspotila wrote,


    In other words, the patients may fit a less restrictive definitionFukuda with mandatory PEM and cognitive problems. This is significant because Fukuda, unlike both the CCC and Holmes Criteria, does not mandate a ≥50% loss of premorbid activity level for a diagnosis of CFS. Fukuda requires only a "substantial reduction" in previous level of activity; it clearly includes patients who have maintained more than half their functioning.

    The distinction is crucial. Both papers that have associated HMRV with ME/CFS have studied patients below the 50% line; Lombardi et al. used the CCC and Lo et al. used Holmes. Any cohort supplied by the CAA Biobank for an HMRV study will not be a replication of the Lombardi and Lo cohortsi.e., patients at the bottom of the disability spectrum.

    This is unfortunate, because Dr. Mikovits speculated in Santa Rosa that the Science study detected HMRV in blood because were looking in the original paper, at the sickest of the sick, and those who have been sick anywhere from 10 30 years, so that presumably they have higher viral loads in their entire body, and thats why we could see it in their lymphocytes.

    The point is, Vernon and the CAA have not fully embraced the CCC, which are sufficient but not necessary for inclusion in their Biobank. It's high time for her to issue a statement strongly endorsing the CCC for all Association activities--research, education, advocacy, etc.

    Given Dr. Vernons recent connection with the CDC and the case definition that redefined CFS as a benign condition of unwellness, its absolutely appropriate to question her current ideology. Now that 96% of patients in the PR poll favor a change of direction and/or leadership at CAA, Dr. Vernon may finally be forced to account for her past actions and comments.
  3. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Dr. Yes, I found your comments here to be very well argued and persuasive. I too would like to hear directly from Dr. Vernon, more public expansion on her views on this topic. And of course I would like her and CAA in general to make more pointed and well publicized criticisms of CDC's and NIH's crimes against science and patients. I am going to ask for response from Dr. Vernon on the CAA is listening thread.

    Rebecca, I agree with you.

    Cort, I agree with your point about Dr. Reeves' use of 'psychiatrically unexplained' in that quote. I don't think it was incorrect or pernicious.

    We've all heard many times your defenses of CAA and reviewed your evidence. Obviously, everyone should speak their heart and do what they feel is right. fwiw, I feel more good would come out of your devoting more time to other advocacy; we could really use your intelligence and tenacity as an advocate focused on our worst persecutors- CDC, NIH, etc. I know that's something we can all rally around.

    Looking at the big picture, it is very clear CAA has overall failed. There is more than enough evidence to support that firm conclusion at this late date. No amount of gut dysbiosis studies or tepid criticism of CDC alters this conclusion. They've got to turn around or pack it in. Period.
  4. BobM


    Reno, NV
    Divided and Conquered( The NIH is Watching)

    Cort, This is unbelievable as in a few weeks the SoK meeting will take place and then CFSAC will follow. Some of the ME/CFS patient population will be walking through the doors saying " We are more concerned about who is Top Dog " rather than what is the NIH doing to help ME/CFS patients, then we can go to CFSAC and say " Hey you guys have been giving up so much of your time(Years) to help us patients that we would like to tell you thanks by making public statements like you are not worthy...Gee I can't wait for the Bloggers sitting at home to come up with some more Bright Ideas to move ME/CFS research forward. For those who do not like any one support group or association, do not join it or support it, then they will not be speaking on your behalf and please stop your whining that these groups who have fought for you have not done enough. They work and support THOUSANDS of patients with no financial support from those patients. You can form your own group and support it, then do what you believe to be so easy...You have no idea what these organizations have done for the masses. I will be at the SoK waiting to hear some of these great thoughts, so please bring them with you. As for P.A.N.D.O.R.A., the Wisconsin Association and the CFIDS AA I will continue to support them, Verbally and Financially.
  5. Cort

    Cort Phoenix Rising Founder

    I think what you have here is a difference in strategy. If I was the CAA and I was trying to get media or federal to this disorder then I probably would use the 1-4 million figure because the media and congressman will perceive CFS to be a more significant if they hear that. Neither of those groups are generally know or care about which definitions (except for David Tuller!) are being used. They don't know about the controversy in the research community and they don't really need to know. Neither the media or congressman are going to solve that question.

    The reason to use the figure is to shock them into supporting more funding for CFS. I support talking to different 'stakeholders' in the language that is appropriate to them. I think it's appropriate to accentuate the costs of this disorder with the media and Congressmen and Senators.

    Remember that she didn't say 4 million people have CFS; she said or the ad said 1-4 million

    You have to remember that is no research definition for the CCC; so endorsing that for research would simply not work. (What would you use?) First the CCC needs to be put into a format that works for research which means that it must be shorter. As I remember the BioBank study focused on people with immune dysfunction, increased pathogen levels and acute onset - a cohort that I think we can both agree looked nothing like the ED. Can we agree on that?

    I think that's a great idea..Let's look at her past actions. Did you read any of the article? Did you see the research she was engaged in at the CDC? Did you check out the research she's done after her time at the CDC or the research she's overseen at the CAA? Yes, she was a co-author on the ED AND she's co-authored many, many other papers. I think you'd probably be happy with what she's focusing on.

    And she's said she does not believe the ED should be used for research and the CAA has said they don't believe it should be used for research. Its up there in black and white at least two times. So you have that too - the both the CAA and Suzanne Vernon saying ED should not be used for research and the CDC should abandon it.
  6. Cort

    Cort Phoenix Rising Founder

    Regarding the Canadian Consensus Criteria.

    Do they support using it? Yes - see the first sentence in the Questions below:

    Then they note that much of the research world doesn't know about it because it was published in one of the few scientific journals that is not published in Pubmed - which is where researchers got to get their information on CFS and other disorders.

    They note the difficulties in providing objective data to help in using it as diagnostic tool then note they've provided Dr. Jason a platform to voice his concerns about it and worked with him to produce the questionnaires used to characterize patient for the Biobank - and thus should be able to assess which patients meet it or not (and see how they fare in the Biobank Studies - an important consideration).

    Of course Dr. Jason is the foremost critic of the ED and having him help design the questionnaires for BioBank will hopefully relieve your worries about having the depressed subset of patients that can the ED allows show up in the CAA's Biobank studies. What more could you want? Furthermore they state they are using him and his questionnaires to produce a better definition for CFS!

    They note that they assess participants to the Bio Bank based on their ability to meet the Fukuda or the CCD. (They almost have to do this since not all physicians diagnose patients using the CCD - many probably use Fukuda) and that they require that post-exertional malaise be present - which is the key aspect of the CCC and they are the first research group to my knowledge to do this.

    Everyone in every one of the CAA's studies will have to experience post-exertional malaise - which will automatically flush many people out who are just depressed.

    This program is a potential Empirical Definition killer. I hope you are relieved about the ED worming its way into the CAA Biobank... I get that you want more..and in some areas I do too.. I think the CCD should be promoted as the Clinical Definition for CFS (note these FAQ's cover research). On the other hand the CAA has and is doing more than any other organization to support it.

  7. Cort

    Cort Phoenix Rising Founder

    We are seeing so much activity with new groups and new idea springing up. They are filling some of the holes that the CAA has left open in the advocacy arena. Its all good. Everybody has their place. I agree - we need all these groups to be strong - so that they can work in their own way.....

    Justin I agree too much time is spent on my part and everyone's part focusing on whether the CAA is doing the right or wrong thing in the right or wrong way. It's taken up an incredible amount of time on my part - and its time to move onto the real matters at hand! Thanks
  8. BobM


    Reno, NV
    More Advocacy is Great, but

    More Advocacy is Great, but not by tearing others down. Stand up, voice your thoughts and opinions and Act, but we will never move forward spending time and precious energy attacking each other. The targets should be Federal Health Agencies and our elected Gov't officials. I await the SoK to see what they are bringing New to the table to prove to patients they are dedicated to finding the cause or causes of ME/CFS along with potential treatments. Thanks for your continued efforts Cort. Time to Donate to your cause.

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