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The CAA Pamphlet to Educate Doctors

Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.

  1. starryeyes

    starryeyes Senior Member

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    lol that makes me laugh.

    Oh then from now on I'm writing that “exerting myself in any way causes a worsening of my symptoms”. Thank you Kim. This explanation doesn't need an acronym. I want CFS treated and written about like all other illnesses are.
  2. jspotila

    jspotila Senior Member

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    I've captured the request and passed it on. We've discussed a LOT of different documents in this (and other) threads, so what I am capturing is the request to review materials posted on the website and remove outdated/inaccurate information, and create new materials when necessary. Hopefully, this conveys the combined requests here.
  3. starryeyes

    starryeyes Senior Member

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    That's awesome jspotila! Thank you so much. :)
  4. The Phantom

    The Phantom Member

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    That's great news! Making sure the infomation on the website is accurate will help a lot of people. Thanks!
  5. fresh_eyes

    fresh_eyes happy to be here

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    That's great to hear, Jennie - thank you.
  6. Samuel

    Samuel Bedbound with NO DOCTOR

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    Well put, Koan.
  7. Koan

    Koan Be the change.

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    Why, thank you Samuel!

    How is the viewing problem?

    Any solutions?!!!
  8. Samuel

    Samuel Bedbound with NO DOCTOR

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    Replying to my own post here. I just realized that some people might think I was talking about advocates. I was not.
    I am talking about readers of the pamphlets -- or of ANY advocacy materials.
  9. Koan

    Koan Be the change.

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    In my opinion, this pamphlet is a total nightmare despite the fact that this or that piece of information may be accurate. I hadn't read it before tonight but a lot of strong feelings people have about the CAA make a great deal of sense to me now. (Thanks for talking to yourself Samuel!)

    I find it hard to believe that this is what the CAA came up with in 2009. I think it is frightening.
  10. starryeyes

    starryeyes Senior Member

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    I'm glad to see you feel that way too Koan. I'm not happy with it at all. I was hoping they would have changed it by now.
  11. Andrew

    Andrew Senior Member

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    The CAA has been advised about the Peter White section of their pamphlet and given detailed information about how the Oxford criteria is wrong. They have been advised about the problems patients face when exercise is not taught with clear instructions about energy management and relapse prevention. But the pamphlet is still sitting on their web site as it always has been. They could, at least, remove it until they decide how to revise it. There are doctors who actually read this stuff. I have one. And I'm tired of having to deal with him trying to act on the bad advice from CAA.

    The saying for doctors is "First, do no harm." I wish the CAA would practice it. Because I don't care how many whiz bang researcher conferences they have if they are still doing us harm.
  12. anne

    anne Guest

    It's still there?????
  13. Andrew

    Andrew Senior Member

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  14. Koan

    Koan Be the change.

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    I truly do find this shocking.

    The over-emphasis on the psychological aspects of ME/CFS - little different in this illness than in any other illness - is totally inexplicable. Why go on and on for page upon page about CBT and excercise?!

    The meta message is that psychological factors are the most noteworthy aspects of ME/CFS and that CBT and GET are the most appropriate treatments. This is, I believe, the inescapable conclusion which will be drawn by any, physician or lay person, reading this pamphlet. The odd accurate statement about biological issues, here and there, does little to address the enormous weight given to the our supposedly faulty attitude.

    I am completely at a loss. I cannot understand how this can be acceptable to anyone who has even basic understand of this illness let alone the organization so many of you support with your rapidly disappearing resources. It is, I think, scandalous.
  15. Chris

    Chris Senior Member

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    Belated coming to this thread

    Hi, all; have just read through this thread (when I first looked at it as it began I did not know what CAA stood for...), and agree with most of the negative commentary--it is appalling that this is part of what our docs read when they go to the web for info on CFS. And thanks to all for some great commentary on exericise and PEM-PEE stuff. A couple of things strike me: one is the date--2005-6; it reads like something from prehistory--there is one side ref to Cheney, but nothing about hearts and cardiac function, nothing about mitochondrial dysfunction, nothing about viruses--let alone retroviruses. The world has changed! This document must be replaced!

    I think many of the statements from named docs are honest, but we all know that more work has been done on things like exercise since; but does anyone know anything about Marcia Harmon, who put the thing together? Her biases are evident not only in the side piece intruding Peter White into the discussion, but also in her reference to Stephen Straus and his 2004 JAMA article. Straus is the guy who wrote a piece that resulted in a press release that said "LIFETIME HISTORY OF PSYCHIATRIC ILLNESS IN PEOPLE WITH CHRONIC FATIGUE SYNDROME" and resulted in headlines like this in the Washington Post: "Chronic Fatigue linked to psychiatric troubles." (Osler's Web, p. 315).

    Does anyone know whether she is still Director of Communications at CAA?

    It is also worth checking out the CFS piece on UpToDate, a commercial outfit that produces info designed to bring docs up to date--I was given a copy by my doc--it claims to have been updated in Jan 2009, but is pretty appalling --I have mislaid my copy at the moment, but includes statements that the discussion whether CFS is psychogenic or biogenic is still unresolved, that it does not kill, and that there is no point in doing immune testing because the results would only include false positives (it being assumed nothing serious is wrong, so they would have to be false). I will post more if and when I find it again.

    I am writing a letter to the Vancouver Island Health Authority because they control health services where I live, and my doc downloaded the document from their website, but writing not only to CAA but also to health authorities who maintain websites designed to help keep GPs up to speed might be something to think about some more--probably some of you are already doing that and are way ahead of me--I have only just started thinking about advocacy issues--a bit late, I admit.
    Best, Chris
  16. jspotila

    jspotila Senior Member

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    Clarifications, Answers

    As I posted earlier in this thread, I have captured and passed on the request "to review materials posted on the website and remove outdated/inaccurate information, and create new materials when necessary." Your request is still pending, but I'm afraid I can't give you a timeline about when this will happen.

    Koan said:
    The Association did not write that article in 2009. It was written in 2006, and published as part of the special research issue of the Chronicle that year.

    Andrew said:
    Indeed, and there are many articles on the Association's website which address the importance of energy management, preventing relapse, etc. In fact, on page 5 of the article at issue in this thread:
    Chris asked:
    Marcia left the Association in December 2008.
  17. Andrew

    Andrew Senior Member

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    This is a pamphlet being offered to doctors to give them an overview of how to deal with patients. We cannot assume a doctor is going to ignore the pamphlet and search the web site instead.

    With regard to page 5, as I pointed out earlier in the discussion, the problem is not the absence of mentioning post-exertion malaise. The problem is it's only mentioned in passing. On page 5 it mentions that exercise doesn't work the same for CFS, and then goes on to offer a plan. But the exercise plan is standard advice for healthy people who are out of shape, with no adjustments made for CFS.
  18. jspotila

    jspotila Senior Member

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    The future of the entire Spark! website is on hold right now. The website was part of the public awareness campaign funded by CDC, but that campaign is winding down. As the contract is wrapped up and comes to an end, the Association will be making decisions on what to do with the Spark! website: keep it with changes, migrate content to the regular website, or shut it down - or somewhere in between. I will keep all of you posted as this unfolds.
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    This is the year folks. Everything is changing.

    XMRV
    More studies will come out
    CAA former campaign expires
    CDC changes over CFS.

    Hold on folks, going to be a memorable ride.

    Tina
  20. jspotila

    jspotila Senior Member

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    I agree that 2010 will be a memorable year! Just to clarify, though, the CDC declined to obligate any additional money to the awareness campaign some time ago (don't have specific date at hand) so the end of that campaign was scheduled to happen well before the October Science article.

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