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New Clinical Case Definition for ME/CFS: Fears It Will Be Labeled “Behavioral Health”

Discussion in 'General ME/CFS News' started by Nielk, Feb 9, 2015.

  1. Nielk

    Nielk

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    By Penny Swift

    http://theargusreport.com/new-clinical-case-definition-mecfs-fears-will-labeled-behavioral-health/

    continue here
    l.
     
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  2. SDSue

    SDSue Southeast

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    Well #%^& ! And I mean that.
     
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  3. FancyMyBlood

    FancyMyBlood Senior Member

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  4. alex3619

    alex3619 Senior Member

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    The process behind the lit reviews and framing the questions, and the bureaucratic support, were and are fundamentally flawed. What differs with the current IOM panel is we have a lot of people who know the science on there. So I have a wait and see attitude. What direction advocacy takes could get more focus in a day or two.
     
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  5. CBS

    CBS Senior Member

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    Let's hope that combining ME and CFS with Fibro is not the direction that this is headed. At the research end, we need far more focused and clear results that can then be generalized as additional research warrants.

    Combining ME and CFS with anything else (regardless of how worthy of funding and compassion) would be a disaster.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue I am with you and my hope that the US Govt is suddenly going to do something different re: this illness or funding it is slim to none. But I would love for them to prove me wrong.
     
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  7. Hope123

    Hope123 Senior Member

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    I think what she meant is that studies need to subset patients. I've had the experience multiple times of reading a ME/CFS or FM study and not knowing if the conclusions reached were erroneous/ less significant for CFS patients because the patients studied were more CFS-like or more FM-like, especially now since the new FM criteria has symptoms that overlap with Fukuda.

    Best thing is to have studies with three different groups: FM-only, CFS-only, FM+CFS; there are a few studies that do this but not enough. The same analogy can be applied to POTS: POTS-only, CFS-only, CFS+POTS. Doing this will allow people to figure the role co-moribidities play in severity of illness, symptoms, etc. and even treatment. For example, we know that patients with pneumonia and acute kidney problems do badly vs. those with only pneumonia; the former need to be hospitalized, the latter could be treated at a clinic.

    Of course, 140 characters on twitter will not allow one to say this.
     
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  8. Vic

    Vic

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    Actually that's exactly what CFS/FM/GWS needs. The attempt to split up these syndromes into groups and try to find biological markers with our medical system's ridiculous over-reliance on technology is the primary reason why research has gotten nowhere. The underlying cause to these syndromes, and others, is the same. It just manifests as different symptoms because each person's specific history of stress (in every health sense of the word) is different.

    There IS a psychological component to these syndromes that interacts with the primary physical cause, which is why it often looks psychological. But on the other hand, what have been considered psychological disorders, particularly much of anxiety, depression, and bipolar (probably others as well), actually also have their primary cause within the physical body that molds our mental states.

    Interested to see what they come up with, though it could still be crap.
     
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  9. Kati

    Kati Patient in training

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  10. Bob

    Bob

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    My interpretation is that she meant ME patients and FM patients should be included in the same studies as separate comparison arms. I don't think she's suggesting that they should be considered to be the same illness.
     
  11. beaker

    beaker ME/cfs 1986

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    Will the webinar be recorded ? My aide just changed time through agency and is coming at 11am tomorrow.( she has to got to CE at reg. time. ) drat.
     
  12. Kati

    Kati Patient in training

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    @beaker, I gather you are on east coast time? I believe it will be recorded. myself I have to get the alarm for 7:45 AM to be there.
     
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  13. CBS

    CBS Senior Member

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    @Bob - I appreciate your thoughts. I wish that I was confident in most of our "experts'" ability to handle even the increased complexity of adding an additional arm to a proper study. I do not doubt their commitment nor their intent.
     
    Last edited: Feb 9, 2015
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  14. Kati

    Kati Patient in training

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    Another Cindy Bateman tweet bits. I asked her yesterday if ME would be mainstreamed. She said

    "Yes I think so. I hope so."

    And then this:
    [​IMG] Lucinda Bateman (@LBatemanMD)
    2015-02-09, 8:57 PM
    @Katiissick @theIOM #mecfs The IOM report is thoughtful, evidence based, designed to engage PCPs and specialists in care. Challenge them!
     
    Last edited: Feb 10, 2015
  15. beaker

    beaker ME/cfs 1986

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    Yes East coaster. No way for me to change it. Don't want to skip hot shower ! She's only here an hour 2x a week. Not much but I take what I can get.
    Glad to know I can watch later. Plus, I'm sure peeps will be posting about it here.

    Good luck w/ your alarm ! If it makes you feel any better -- I'll have to set one to be up at 11am ;-)
     
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  16. Bob

    Bob

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  17. Forbin

    Forbin Senior Member

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    Perhaps the idea would be to create a class of illnesses with the basic idea being that, by grouping them together, you create sufficient critical mass to get better research funding.

    This would not mean that the illnesses were one in the same, just that the same research methods might be appropriate for all of them.

    You can see this kind of thing going on in Natelson's proteome study, which used a particular method to find potentially unique spinal fluid proteins in both ME and in Post Treatment Lyme Disease Syndrome. The results were different for ME and PTLDS, but they were found in the same study.

    This might not be without pitfalls, but it might get ME research out of the "ghetto" it's been in at the NIH.

    All speculation, though...
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    I completely disagree with that, that's no different to saying that everyone who has ME has FM or POTS, simply its not true.

    Many with ME dont have ANY psychological component at all. When I applied for disabilty I didnt back then and that was why they kept rejecting my claim as they deemed me psychologically healthy. I didnt have anxiety and I didnt have depression.

    You may have a psychological component in your case but you shouldnt assume everyone else who has this has. Its that kind of crappy belief in that past which has had me completely dismissed by some doctors as my mental health was good thou my ME was terrible.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    ummm "IOM report" is "evidenced based" .. oh really. As far as Im aware the severe ME group isnt used in studies so how can studies not including this group be "evidence based". There was no way they are going to come up with anything good enough for the severe ME group by studying studies of people minorly affected.

    Ive got no trust at all in this.. as far as Im concerned ME isnt going to go mainstream if they are still mixing it with CFS and if ME isnt clearly defined in the definition...

    Im struggling to believe at this point that this whole thing is going to go right (well in a way Im going to be happy with it). I hopefully I'll be proved wrong and get a nice surprise but seriously, I just cant believe it at this point. We've seen too much go on around the IOM which dont look good!

    and Ive seen how a lot of the ME/CFS specialists, water down ME. Im expecting Im about to see that.
     
    Last edited: Feb 10, 2015
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  20. Iquitos

    Iquitos Senior Member

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    I agree. The psychological SYMPTOMS we have are not "components." Like syphilis and rabies, the disease has some psychological symptoms, sometimes, but are not causal.

    Like taniaaust1, I have never had anxiety or depression. But I do have FM symptoms which I believe are caused by ME/CFS.
     
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