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CAA is Listening

Discussion in 'Action Alerts and Advocacy' started by jspotila, Feb 11, 2010.

  1. Navid

    Navid Senior Member

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    ooooh JustinReilly GO GO GO

    congrats JR...welcome to the club : )

    great posts!!!

    i want parvo, gerwyn, dr yes, justinreilly, teejkay, cbs, islandfinn, oerganix, george, kim and koan to lead the advocacy group that represents me, my illness and my quest for health....they are smart, well-spoken, great writers, diplomatic and tough/strong. you can LEAD us to the promised land!!!!!!!:victory::D
  2. starryeyes

    starryeyes Senior Member

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    You too lisag! :victory:
  3. Gerwyn

    Gerwyn Guest

    intertwining supposition,subjective terminology and opinion with some fact is not helpful in this arena.We are bedeviled enough by this approach allready.

    Based on my obsevations of the posts and direct conversations with members of the forum the following is the majority opinion;

    members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin

    They have also expressed the view that the use of CBT/GET as treatments are inappropiate anywhere in the world and potentially dangerous

    The Oxford criterea are incapable of distinguishing patients with ME/CFS from those with clinical depression

    The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby

    Whether these expressed views generalise to other members is a question that,at the moment, no one can answer Perhaps other members could record their views on this thread?

    The Oxford criterea are the diagnostic criterea used by this group of psychiatrists.

    They are not the official guielines of the UK or anywhere else in the world.

    If they are are adding in guesswork then that simply compounds the felony.

    Being able to pick out some patients with CFS would be about as much use as a chocolate teapot in preparinga cohort for a trial.

    Actively recruiting patients with depression would be somewhat problematic as well!

    The method of selection of the patients in the European studies is perfectly clear.They used the diagnostic criterea established by Sharpe et al (1991) clearly stated in the studies.

    By definition then they had no proven pathologies as they would be excluded.

    In contrast the patients in the WPI cohort had an number of documented medical conditions so clearly a different cohort.

    This folowing extract from your post is simply incorrect

    "However, who is going to test a patient to exclude all of that? One of our problems is that doctors don't have funds to test every CFS patient to exclude every possible condition, so they rely on clinical signs and symptoms. And that leads us to that enormous list because there are more diseases than symptoms. The body has a limited number of symptoms it can present, so symptoms overlap a lot."

    The reason they train doctors is to distiguish diseases whose "symptoms overlap a lot"

    You dont need to" test a patient to exclude all that" merely the ones that have clinical conditions "at presentation or diagnosed subsequently" using a physical examination , history and signs(Sharpe et al 1991)


    Ergo patients with known or" suspected" neuro immune or endocrine disorders are excluded simple enough
  4. oerganix

    oerganix Senior Member

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    Yes! This is why I was so disappointed to find the March 2010 issue coming out of CAA with propaganda from the UK psych-lobby, including statements like (you have CFS because) (paraphrasing) "you don't know what you want to do with your life"!!! (But talk therapy and exercise will fix you...IF you really want to be fixed.) Plus the utter crap on their Facebook page with the hypothetical "stages" of a CFS woman patient. It reads like some stupid "women's magazine" from the 50's. It is incredibly condescending and trivializing! I don't understand why, unless they want to be able to back all sides of any argument that comes out.

    IMO, we don't need this kind of ambivalence, especially not now. I understand that they don't want to "back" a losing horse (potentially XMRV/WI), but their response to this very real discovery has been just too much on the fence. The Dutch study would have been a great opportunity to publish the Canadian Criteria and do an article on why it should be used in all research on ME/CFS, and why the cohort criteria used in the Dutch study is such garbage. Even if XMRV doesn't turn out to be the boogieman, it does us, the patient community, absolutely no good to be ambiguous towards such totally refutable studies as the first UK one and the Dutch one.

    WE know how and why they were done and how and why they FAILED to find XMRV. Why not put that out there for those who don't know? Surely Dr Vernon knows the history of the fraud and propaganda efforts coming out of UK, and their Dutch clones, so WHY did she treat them AS IF they had some kind of par with the WPI/NCI/Cleveland Clinic study?

    Justin said: Dr. Vernon Should be on Talk Shows Exposing CDC.
    I want Dr. Vernon on talk shows exposing CDC. She was an insider. Her name is on the "Reeves Criteria." I know she is a scientist. In the name of science ("knowing the truth") she should be out there exposing CDC's anti-science campaign against us for the past 25 years. Give her a raise for this. It is vitally important for us as a patient community and human beings deserving freedom from the abuse propagated by CDC. Her silence is deafening. "

    This is spot on. Her bio on CAA trumpets that she worked at CDC for XX-years, as if that were some kind of accomplishment, but we who have suffered through those useless, even harmful, years of malfeasance and medical abuse/neglect don't see that as an accomplishment at all. I think there may be others here, who like me, had hoped that she would be a whistleblower who would do something to ATONE for those years, for which she was paid well while we suffered the appalling consequences of what Reeves, with her help, did to us. This is why some of us question where her loyalty lies. Is it still with the CDC?
  5. flex

    flex *****

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    There is only one way to Settle this and that is for us to write to Dr Vernon. She is not giving us the service we want or the service we deserve. Like Gerwyn says she should be shouting from the rooftops about the flaws and misleading studies regardless of the WPI issue. We should write directly to her and not the CAA as they often state most of them are volunteers and snowed under. If she does not have the political understanding and cannot see the issues with the Oxford criteria and the fake European studies what is she doing representing us?

    The information is on a plate for her as stated by people like Gerwyn and many others here. Either she is with us or against us.

    Lisag has listed a whole host of intelligent people on this site, could one of them just send her as direct email and tell her what we want. It would only take an hour or two.


    I propose Gerwyn with Teekjay as the editor. Hope you guys don't mind me putting you forward. If we want the CAA to represent us then shouldn't we be part of it. Does it have a membership base?

    To me its really simple - if she is not going to represent us she should step down. We don't want another Charles Sheppard. We need a Malcolm Hooper type at the head of the CAA.

    This is like a lawyer presenting the opposition case. There is enough representation of flawed studies and theories by the people that run them. That is not her job. Imagine if you went to court and your lawyer didn't scrutinise the flaws in the prosecution evidence and then went on to say "Yeah, that evidence looks good to me".
  6. kurt

    kurt Senior Member

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    USA.Earth
    I hope CAA appreciates this free market research, the focus group of the forum...

    Although several of us may have different ways to say things I see most people here repeatedly making the same basic points.

    And for the record the idea that someone is 'for us or against us' is just not science, that is politics. We are discussing both science and also advocacy, and I am seeing the lines blurred until people are arguing about semantics. The science of CFS is complicated and I am sure Dr Vernon is 'for us' in terms of solving CFS. IF she were 'against us' she would not be working for CAA, an organization that promotes biological research into CFS and tries to reconcile the many different factions in the research and practitioner and patient communities.

    The points in agreement seem to be what I said before, then Gerwyn re-worded, I'll repeat Gerwyn's version with my added comments:

    1. members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin (and some members also believe that XMRV has not yet been sufficiently challenged to prove that it IS actually involved in CFS, a better study that either finds or does not find XMRV in a real CFS/ME cohort would help answer that question)

    2. They have also expressed the view that the use of CBT/GET as treatments are inappropiate anywhere in the world and potentially dangerous (for CFS and ME patients, although clearly they help psych patients and some others)

    3. The Oxford criterea are incapable of distinguishing patients with ME/CFS from those with clinical depression (and other fatigue-related conditions. additionally NONE of the current ME/CFS diagnostic criteria uses biological diagnostics such as low NK cytotoxicity, which have been known for years. We need biological diagnostic measures for the CFS criteria)

    4. The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby (with the primary problem being they are presented as or implied to be treatments when they are at best only coping strategies, and at worst, if mis-applied, very dangerous for CFS/ME patients)


    So in the sense of a 'focus group', is this generally the consensus opinion here? The 'message' to CAA and Dr Vernon, etc.
  7. Gerwyn

    Gerwyn Guest

  8. Gerwyn

    Gerwyn Guest

    MORE FROM KURT
    However, who is going to test a patient to exclude all of that? One of our problems is that doctors don't have funds to test every CFS patient to exclude every possible condition, so they rely on clinical signs and symptoms. And that leads us to that enormous list because there are more diseases than symptoms. The body has a limited number of symptoms it can present, so symptoms overlap a lot.

    The big problem I see with 'who to include' in a CFS study is not really which selection criteria to use, because any of them will pick up some CFS patients, along with many other problems. Rather the problem is that NONE of the selection criteria uses a concrete biomarker. They are still shooting in the dark.

    NOW MINE BEFORE IT WAS MANIPULATED

    intertwining supposition,subjective terminology and opinion with some fact is not helpful in this arena.We are bedeviled enough by this approach allready.

    Based on my obsevations of the posts and direct conversations with members of the forum the following is the majority opinion;

    members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin

    They have also expressed the view that the use of CBT/GET as treatments are inappropiate anywhere in the world and potentially dangerous

    The Oxford criterea are incapable of distinguishing patients with ME/CFS from those with clinical depression

    The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby

    Whether these expressed views generalise to other members is a question that,at the moment, no one can answer Perhaps other members could record their views on this thread?

    The Oxford criterea are the diagnostic criterea used by this group of psychiatrists.

    They are not the official guielines of the UK or anywhere else in the world.

    If they are are adding in guesswork then that simply compounds the felony.

    Being able to pick out some patients with CFS would be about as much use as a chocolate teapot in preparinga cohort for a trial.

    Actively recruiting patients with depression would be somewhat problematic as well!

    The method of selection of the patients in the European studies is perfectly clear.They used the diagnostic criterea established by Sharpe et al (1991) clearly stated in the studies.

    By definition then they had no proven pathologies as they would be excluded.

    In contrast the patients in the WPI cohort had an number of documented medical conditions so clearly a different cohort.

    This folowing extract from your post is simply incorrect

    "However, who is going to test a patient to exclude all of that? One of our problems is that doctors don't have funds to test every CFS patient to exclude every possible condition, so they rely on clinical signs and symptoms. And that leads us to that enormous list because there are more diseases than symptoms. The body has a limited number of symptoms it can present, so symptoms overlap a lot."

    The reason they train doctors is to distiguish diseases whose "symptoms overlap a lot"

    You dont need to" test a patient to exclude all that" merely the ones that have clinical conditions "at presentation or diagnosed subsequently" using a physical examination , history and signs(Sharpe et al 1991)


    Ergo patients with known or" suspected" neuro immune or endocrine disorders are excluded simple enough


    KURT STATED A POSITION I STATED MINE i AM HAPPY TO ASK FORUM MEMBERS TO VOTE ON WHICH THEY BELIEVE TO MOST ACCURATELY REPRESENT THEIR VIEWS.BUT THE VOTE MUST BE RELATED TO THE ORIGINAL POSTS AND NOT ONE WHERE MY WORK WAS ADDED TO AND ITS MEANING ENTIRELY CHANGED AND MISREPRESENTED .I THINK MOST OF US HAVE HAD ENOUGH OF PEOPLE USING THESE TACTICS TO FURTHER THEIR POSITIONS
  9. Kati

    Kati Patient in training

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    Very good point Gerwyn. I'd be very curious to see which biomarker could be used?
  10. starryeyes

    starryeyes Senior Member

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    Thanks Flex, I'd be honored to edit it. Someone else needs to write a rough draft. :)

    teej
  11. Gerwyn

    Gerwyn Guest

    NOW MINE BEFORE IT WAS MANIPULATED intertwining supposition,subjective terminology and opinion with some fact is not helpful in this arena.We are bedeviled enough by this approach allready.

    Based on my obsevations of the posts and direct conversations with members of the forum the following is the majority opinion;



    I WILL LEAVE IT TO OTHERS TO JUDGE WHETHER IN ANY WAY MY POST MAKES THE SAME POINTS AS KURT---ANY COMMENTS WELCOME
  12. starryeyes

    starryeyes Senior Member

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    I've got to read and try to comprehend what you are saying here Gerwyn and Kurt. Need more fuel first. I'll be back.
  13. oerganix

    oerganix Senior Member

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    Why not ask the clinicians who are treating CFS/ME what biomarkers they consider most important? Ask Peterson, Cheney, Klimas etc. which tests they prescribe and which ones tilt the evidence toward a diagnosis of CFS. I should think PEM would be a place to start, probably brain scans....maybe the Drs Light evidence of how different the response to exercize is - this should weed out the 'merely' depressed. I wouldn't have a problem with a "menu" of biomarkers, from which a subject would need to have a minimum number.
  14. flex

    flex *****

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    Kurt,

    Wessely is against us, Malcolm Hooper is for us, Dr Vernon is ........? Having someone at the helm of the CAA who seems naive to the politics or is sitting on the fence will make no amount of scientific expertise over ride the necessary politics. You seem to think the two can be divorced. Saying that we cant call her on the political issues because she is a scientist is like saying we cant call Obama on the war because he is just good a public speaker. On top of that as Gerwyn has said the Oxford criteria has no official status in the UK or anywhere else. Why therefore is Dr. Vernon so unaware of this and why is she justifying its use.

    There is no science in the European studies and she should be addressing this issue. She wants to challenge the WPI cohorts but not the European ones. Come on really!!! Why is that OK?

    Saying we should use the Oxford criteria "cos that's all we got" is like a builder using asbestos tiles "cos that's all he got". There is no excuse for using Oxford or Reeves or any other watered down criteria.

    Secondly there is no excuse for defending its use and that is what Dr. Vernon did.

    Saying that someone is good for us because they work for "our" organisation is over simplifying things. Lots of people voted for the Labour party in England but didn't value Tony Blair's approach to many issues.
  15. kurt

    kurt Senior Member

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    That was my point, not Gerwyns. He was quoting.
  16. kurt

    kurt Senior Member

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    Gerwyn, why are you shouting?

    I think I made it perfectly clear I was adding comments to your points. You were responding to what I said earlier, which was an effort to find some summary statements. I am trying to find some consensus opinion. That was not a 'tactic' and not a 'manipulation'.

    Everyone here is entitled to their own view, if no common ground can be found because of some detail in emphasis or wording, then that is just the way things go.
  17. Gerwyn

    Gerwyn Guest

    I was not shouting merely emphasising your deliberate misrepresentation of my work without my permission. Now are you willing to put your money where your mouth is and have the originl posts voted on as to which represents the majority view.or are you once again going to hide in a maze of subjective terminology with multiple meanings as appears to be your forte.?

    If you are prepared to make a post at least have the conviction to back it up.Your post and mine made completely different points

    .Of course you may have genuine difficulty in expressing yourself and understanding anothers posts.

    That would of couse explain the lack of clarity ambiguity and excessive subjectivity contained therein.

    This would also explain The constant need to "clarify" your position.If this is so then of course I apologise
  18. starryeyes

    starryeyes Senior Member

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    I took out what I thought was clear and appropriate as brainstorming for a letter to Dr. Vernon from what both Gerwyn and Kurt have proposed. I colored Kurt's comments so we can more easily see his points and Gerwyn's complaints about them:

    Gerwyn wrote:

    Based on my obsevations of the posts and direct conversations with members of the forum the following is the majority opinion;

    Members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin.
    They have also expressed the view that the use of CBT/GET as treatments are inappropriate anywhere in the world and potentially dangerous.

    The Oxford criteria are incapable of distinguishing patients with ME/CFS from those with clinical depression.

    The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby.
    The Oxford criterea are the diagnostic criterea used by this group of psychiatrists.

    They are not the official guielines of the UK or anywhere else in the world.
    Actively recruiting patients with depression would be somewhat problematic as well!
    By definition then they had no proven pathologies as they would be excluded.

    In contrast the patients in the WPI cohort had an number of documented medical conditions so clearly a different cohort.



    Kurt Added in parentheses:

    The points in agreement seem to be what I said before, then Gerwyn re-worded, I'll repeat Gerwyn's version with my added comments:

    1. Members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin (and some members also believe that XMRV has not yet been sufficiently challenged to prove that it IS actually involved in CFS, a better study that either finds or does not find XMRV in a real CFS/ME cohort would help answer that question)

    2. They have also expressed the view that the use of CBT/GET as treatments are inappropriate anywhere in the world and potentially dangerous (for CFS and ME patients, although clearly they help psych patients and some others).

    3. The Oxford criteria are incapable of distinguishing patients with ME/CFS from those with clinical depression (and other fatigue-related conditions. additionally NONE of the current ME/CFS diagnostic criteria uses biological diagnostics such as low NK cytotoxicity, which have been known for years. We need biological diagnostic measures for the CFS criteria).

    4. The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby (with the primary problem being they are presented as or implied to be treatments when they are at best only coping strategies, and at worst, if misapplied, very dangerous for CFS/ME patients).


    So in the sense of a 'focus group', is this generally the consensus opinion here? The 'message' to CAA and Dr Vernon, etc.
  19. starryeyes

    starryeyes Senior Member

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    Now I'm going to add my comments in green.
    IMO:

    Kurt Added in parentheses:

    The points in agreement seem to be what I said before, then Gerwyn re-worded, I'll repeat Gerwyn's version with my added comments:

    1. Members suspect that there is something very wrong with the European studies carried out by a group of psychiatrists with a vested financial and egotistical interest in propagating their stance that ME/CFS is of psychological origin. (and some members also believe that XMRV has not yet been sufficiently challenged to prove that it IS actually involved in CFS, a better study that either finds or does not find XMRV in a real CFS/ME cohort would help answer that question)

    I don't agree with adding Kurt's comments here. I think we want to stick to the facts about why we're unhappy with Dr. Vernon and the CAA and make it as simple and to the point as possible. Let's focus on what she can do for us right now.

    2. They have also expressed the view that the use of CBT/GET as treatments are inappropriate anywhere in the world and potentially dangerous. (for CFS and ME patients, although clearly they help psych patients and some others).

    Originally, I thought this was okay. Looking at it again, I don't like the additions. I think it muddies the water. We want to be clear and concise.

    3. The Oxford criteria are incapable of distinguishing patients with ME/CFS from those with clinical depression. (and other fatigue-related conditions. additionally NONE of the current ME/CFS diagnostic criteria uses biological diagnostics such as low NK cytotoxicity, which have been known for years. We need biological diagnostic measures for the CFS criteria).

    I'm not sure about Kurts's addition here as it is written. I don't think we should emphasize this point and say "NONE". The WPI used the Canadian Definition as well as Fukuda to define their cohort. Yes it would be great if we had a biomarker but is that a point we need to drill home to Dr. Vernon? Consider that the CAA is funding research right now to find a biomarker. They're to be praised for this.

    4. The literature produced by the CAA regarding CBT and GET is wholly misleading and playing straight into the hands of the psychiatric lobby. (with the primary problem being they are presented as or implied to be treatments when they are at best only coping strategies, and at worst, if misapplied, very dangerous for CFS/ME patients).

    I have to say, again, I think we want to keep this simple. Adding on to what Gerwyn wrote here detracts from what he has clearly stated.



    So in the sense of a 'focus group', is this generally the consensus opinion here? The 'message' to CAA and Dr Vernon, etc.


    and I think these are good points by Gerwyn:

    The Oxford criterea are the diagnostic criterea used by this group of psychiatrists.

    They are not the official guielines of the UK or anywhere else in the world.
    Actively recruiting patients with depression would be somewhat problematic as well!
    By definition then they had no proven pathologies as they would be excluded.

    In contrast the patients in the WPI cohort had a number of documented medical conditions so clearly a different cohort.

    Well, I re-edited what I wrote initially here. I realize what Gerwyn is saying. I vote that we keep it simple and to the point. I want to make a strong, clear message. Comments?
  20. fingers

    fingers Senior Member

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    Not many responses so far

    Well done Tee, and it only took you an hour to refuel and respond. Woeful response to your efforts, so I thought I'd have a crack.
    F

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