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Reeves questionnaires in clinical settings - CDC marketing them

Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Jul 27, 2010.

  1. Dolphin

    Dolphin Senior Member

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    I haven't read this thread through but just to say that if one follows a link in my sig, one can sign a petition against the empiric criteria. One can also make comments.

    If people want to highlight this themselves e.g. "like" it (if you are on Facebook), put it in your sig, mention it on Twitter, link to it from your blog/website/the odd time in forum posts, that'd be great.
  2. muffin

    muffin Senior Member

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    USA!
    Bets on ...Reeves is forced to retire from the CDC after Lo/Alter paper hits

    the fact that the CDC will "retire" Reeves when the FDA study comes out and the Media Campaign hits and hard questions get asked of the CDC and other health orgs?

    Watch. Reeves will be retired after the dust settles from the Lo/Alter paper and then our Media Blitz -

    Any takers?????
  3. Dolphin

    Dolphin Senior Member

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    I have no idea about Reeves personally.

    The SF-36 (aka RAND) questionnaires are very very widely used in research including CFS so I expect they will continue to be used.

    It's just that the CDC use them in a very odd way to diagnose/define CFS. And the CDC have studies in the pipeline (I think the XMRV study may be the only one published thus far that has used the registry patients??) so I expect there are probably 10+ papers using the empiric criteria already done. Of course, the data could be re-analysed by the CDC and/or the information released and others re-analyse it. Not sure how likely that is but I don't want the empiric criteria used in the future.
  4. xrayspex

    xrayspex Senior Member

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    thanks Dolphin, just did the petition and donate!

    I was affected by that da*mn study this summer when I went for a physical with a new female nurse practitioner and she saw the cfs dx on there and asked me if any sexual abuse in childhood or depression relate to my health issues; unreal--at same time I am immersed in reading about all this infectious basis research with CFS-- some 'state of the art' practitioner asks me about that crap because her reading material as a clinician has been different than mine as a patient, wth!? and irregardless if some of us have those issues or not they seem to make it their first line of inquiry, geezh, can we just get to the point where they give ya a blood test and ask questions like that later.....
  5. Dolphin

    Dolphin Senior Member

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    That's great you signed. Whether people want to support ipetitions.com is up to them.

    In the UK, the Netherlands and from what I can make out Belgium, what one is generally offered in the public (normal) health system are non-pharmacological interventions.

    Training courses in the UK are full of psychobabble.

    Of course, for most of the clinics in the UK, apart from a 10 minute appointment and some very basic testing to rule out some other conditions, the rest of the time there are no biomedical treatments or testing - just psychological interventions of one sort or another/rehab courses.

    XMRV may not work out for some of us so I think it is important to highlight how dodgy the cohorts were in all this CDC research which can have a high standing because of who they are and because they used population cohorts.
  6. xrayspex

    xrayspex Senior Member

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    absolutely, how crazy-making, to not feel well and then have some "authority" lecturing psychobabble, enough to make one cry or hit and then they will label ya nuts, argh!
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    All of these issues is behind our ad campaign. If you want to make a public statement about this situation, then go here and help us. http://www.causes.com/causes/511536

    Thanks to Mary for telling us that the information is getting to physicians.

    Tina
  8. xrayspex

    xrayspex Senior Member

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    money--done, comment-latah
    thx

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