The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

New info on CFS, looks good

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Nov 18, 2011.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I don't know anything about this website. I was looking at info about mitral valve prolapse. And what do I see? I see a little rotating ad spot with one of them has "RISK" and Chronic Fatigue Syndrome with new information. So I clicked on it. I went through all of the slides. Pretty good. They used the 1994 Fukuda criteria for symptoms, but that is to be expected.

    But, the pictures seemed to accurately reflect our situation. Also, no CBT or GET under treatments. Some other info came from CDC. But they seemed to pick the better information. It says this is info from doctors. I with there was a place to leave comments. I would tell them what a good job they did.

    http://www.medicinenet.com/chronic_fatigue_syndrome_pictures_slideshow/article.htm

    Are we winning the war?

    Tina
     
  2. livingwithcfids

    livingwithcfids

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    Thanks

    Thanks for posting this, I've never seen it before. I hate to burst the bubble, but most of the information in the slides has been known in the CFS community for years. This slide presentation appears to be more geared toward the general public as an introduction to the illness.

    Slide 1: "In some cases, CFS can persist for years." This is a bizarre statement considering that the criteria to be dx with CFIDS is at least 6 months of severe fatigue, among other symptoms. I would argue in the vast majority of cases, CFS persists for years. (unfortunate, but true)

    Slide 12: "Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up."
    I'm wondering if they included patients with major depressive disorder because that is such a large variation in improvement rates.
     
  3. taniaaust1

    taniaaust1

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    I personally was impressed with that sideshow. It was far better then most of the online stuff we generally see at medical info sites.

    Im extremely impressed with slide 5 which lists ME as a separate condition to CFS. All of us who have ME should be happy to see a distinction made here.

    I was impressed with slide 12s info which I think does help get throu to general public about the serious of things and for once accurate info based on studies being told.. and shows most of us (who unfortunately do carry the CFS diagnoses currently) dont just get better but remain sick. (yes of cause the recovery rate listed there thou is for CFS not for ME but it was CFS they were talking about there and not ME).
     
  4. biophile

    biophile Places I'd rather be.

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  5. taniaaust1

    taniaaust1

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    It is known to the ME/CFS community but one rarely sees such info on sites giving out medical info.

    Yes.. slide 12 is talking about CFS study so yes would not just include the ME patient group but ones with all kinds of other ilnesses which come under the CFS banner.

    (the CFS info slideshow 5 lists ME as being a different illness to CFS).

    "In some cases, CFS can persist for years".. there is nothing untrue about that statement. (once again they are talking about CFS and not ME which they did point out was a different illness to CFS)
     
  6. justinreilly

    justinreilly Senior Member

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    Not impressed. Just looks like regurgitation of CDC nonsense.
     
    livingwithcfids likes this.
  7. Desdinova

    Desdinova Senior Member

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    Interesting a little puzzled by why Web MD has another site by another name? It seems a little redundant. But not mentioning Antidepressants, CBT and GET was a nice touch.
     
  8. livingwithcfids

    livingwithcfids

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    No one can definitively say M.E is not the same illness as CFS as there are no lab tests to distinguish either. IMO, CFS is a poor term for describing M.E. The CDC is to blame here. Same illness, different names.


     
  9. Gamboa

    Gamboa Senior Member

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    I thought it was generally quite good. Thanks for posting this, Tina.

    Gamboa
     
  10. Snow Leopard

    Snow Leopard Hibernating

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    Sounds like a circular argument to me.

    I personally think the advice is average at best. "There are no physical signs that identify CFS, and there are no diagnostic laboratory tests for CFS."
    That is a really bad way to put it because it sounds like there are no medical abnormalities. There are (as we know from all the research), but they aren't specific. A better way would be that there are medical abnormalities found in blood tests, but none are specific enough to be used for diagnosis of CFS.
    We haven't yet discovered specific biomarkers for many types of cancer yet either (biomarkers that would lead to clinical blood tests), but most people might not realise that.
     

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