Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Discussion of full IOM report

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Simon, Feb 12, 2015.

  1. Simon

    Simon

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    It's a bit daunting at 300 pages, but they are small pages and it's remarkably readable.

    Dowload here (free registration required, or read online without registration)

    From what I've read so far, it's a cracker - congratulations to the IOM team for such thorough work. I'm sure this report will be much-quoted.

    Here's a starter from me:

    Review of the Evidence on Major ME/CFS symptoms (p71-)

    LIMITATIONS OF THE RESEARCH BASE

    - Unrepresentative samples: mostly well-educated white middle-aged women from tertiary clinics (tho middle-aged women might be representative according a recent large Norwegian study)

    - criteria problems - mostly Fukuda as most research uses this
    Internal validy
    -
    Reliability
    Much more to come in due course.
     
    Last edited: Feb 12, 2015
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  2. Simon

    Simon

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    love this bit too, on how fatigue in ME/CFS/SEID isn't just generic fatigue and is much worse than in other fatiguing illnesses

    FATIGUE AND ITS IMPACT ON FUNCTION

    The Gambert reference is great, distinguishing between physiologic normal fatigue in healthy people, and organic fatigue assoicated with a medical problem
    Back to the report:
    Thank you...

    Impact of Fatigue on Function

    Looking just at the SF36 "vitality measure", Table 4-1 demonstrates the profoundly low scores for ME/CFS compared with the other conditions
    [data: Healthy score 60-70, other fatiguing conditions typically 40-50, mecfs 15-25]

    Summary
    This, of course, is different from the view of some doctors, highlilghted in this thread (comments from docs on IOM report)

    wow, that's only 7 pages worth so far, I'm hoping the rest will be a good deal less quotable
     
    Last edited: Jul 28, 2015
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  3. MikeJackmin

    MikeJackmin Senior Member

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    I think we got really lucky here. This could so easily have been so much worse.
     
  4. Bob

    Bob

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    I posted this elsewhere, but I think it's worth posting here as well...

    Page 86 of full report, acknowledges that PEM may be a hidden feature of the illness in patients who manage their activity levels.

     
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  5. Simon

    Simon

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    Thanks, Bob, you're ahead of me. I'm delighted they recognise implicitly that many patients pace with the main aim of reducing frequency and severity of symptoms, esp PEM, so questions need to probe this to get true picture

    Elsewhere I posted this from the brief report
     
    Last edited: Jul 28, 2015
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I just tried to read the report online but the writing was too small and fuzzy.

    Are there qualifications for the key symptom of unrefreshing sleep? Some of us have found solutions to this, and now sleep quite well, but we still have ME/SEID. I also believe that I read here that some people don't have that symptom. Does that definitely mean they don't have ME? (It's still ME in the UK, so I don't want to switch yet!)

    It seems to be quite common to start with hypersomnia and later switch to insomnia/hyposomnia. Is there any reference to that?
     
  7. SOC

    SOC

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    I think the emphasis here is on unrefreshing. The point is not whether we sleep well or not. The point is that sleep does not relieve the fatigue/exhaustion, as it does with healthy people. Sleep does not refresh us. Our lack of energy is much more complex than a simple need for a good night's sleep. I think that's the point they're trying to make.
     
  8. lansbergen

    lansbergen Senior Member

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    Not sleeping well does not help and one needs good sleep to heal.

    Sleeping like a baby helps reduce exhaustion but that did not happen untill I had improved enough.
     
  9. alex3619

    alex3619 Senior Member

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    I find enough rest or adequate sleep take the edge off because my instant energy recharges. The deep (aerobic) energy that lies beyond that is unaffected though.
     
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  10. Soundthealarm21

    Soundthealarm21 Senior Member

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    That was like reading poetry. It's definitely the case for me as I move around so little that I never let myself get into a PEM state, not anymore anyways.
     
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  11. Esther12

    Esther12 Senior Member

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    Do they really need to emphasise the fact that sleep is not curative in this way? Having a nice relaxing bath can cure many people's fatigue... not with CFS though. That doesn't mean that a key part of the criteria should be 'bathing is unrefreshing'.
     
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  12. Soundthealarm21

    Soundthealarm21 Senior Member

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    I think when discussing criteria for an illness it needs to be spelled out in black and white to make it as simple and easy to understand as possible. It might be a no brainer to us, but to a new sufferer or someone that thinks they have this illness (but actually don't) it would be helpful to have that clearly stated.
     
  13. Ecoclimber

    Ecoclimber Senior Member

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    So I would assume the comment above applies to the PACETrial Study as well, Right? ;)
     
    Last edited: Feb 12, 2015
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  14. SOC

    SOC

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    Exactly! Not only new sufferers or people who think they have this illness (but don't), but the PCPs for which these criteria are designed need to be told that sleep does not relieve our energy levels. To us, it's glaringly obvious. The average PCP who knows nothing about this illness needs to be told this is a critical feature of PEM because our level of unrelievable exhaustion is completely unfathomable to them.
     
  15. Esther12

    Esther12 Senior Member

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    I do have a concern that some of the biopsychosocial lot have been emphasising sleep problems recently though. Anything that could favour their approaches is probably a bad thing imo.
     
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  16. Bob

    Bob

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    Accessing the full report.

    It's easy to download the full report and you don't need to register.. you can download as a guest. Click on the following links: "I don't have an account" then "download as a guest", at the bottom-right of this webpage:
    https://www.nap.edu/login.php?record_id=19012&page=http://www.nap.edu/download.php?record_id=19012

    Alternatively the full report has been uploaded to Phoenix Rising:
    http://forums.phoenixrising.me/inde...et-whats-in-the-iom-report.35465/#post-556850
     
    Last edited: Feb 12, 2015
  17. Sean

    Sean Senior Member

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    We have to accept that no matter what approach and name is used, or findings come from research, the Wessely school of psychs will always try to spin it in their favour. But that is no excuse for us not to keep moving forward.

    There will be no single decisive moment when they suddenly stop having any serious influence, but that influence is diminishing bit by bit, day by day. The tide has turned against them, and all their spin and hot air and bogus hand-wringing 'concern' for our welfare can't change that.
     
    Last edited: Feb 12, 2015
  18. Bob

    Bob

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    I've only read a fraction of the full report, and I haven't read much about sleep yet, but it does distinguish between unrefreshing sleep and disturbed sleep... It says that disturbed sleep is not a factor for a diagnosis...

    So a good sleep pattern, and sleeping well, wouldn't exclude you from a SEID diagnosis.
    (Whereas sleeping soundly would exclude you from a CCC diagnosis.)

    Unrefreshing sleep means that you have limited energy when you go to sleep and limited energy when you wake up. i.e. a good night's sleep will not cure you, or significantly improve your illness. As @SOC says above, spelling out the obvious like this might be very helpful because it will stop ignorant health professionals saying "there-there dear, you go home and get yourself a good nights sleep, and I'm sure you'll feel better." And it will help stop the misinterpretation that ME/SEID is a stress-related illness experienced by people who are over-worked etc.

    The best description of my interpretation has been posted above by @SOC

     
    Last edited: Feb 13, 2015
  19. Bob

    Bob

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    I haven't read it all.. I've been skimming it.. looking for bits that most interest me.
     
    Last edited: Feb 13, 2015
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  20. Bob

    Bob

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    For folks who are interested...

    A brief discussion of the definition of 'recovery' is on page 263, mainly focusing on the paper by Adamowicz et al. 2014. It makes it clear that a recovery requires a return to pre-morbid levels of health, and that some of the literature conflates improvement with recovery. (I think we can guess what research they're referring to! Hint = PACE!)

    And a brief discussion re CBT/GET is on pages 264-265. It says that CBT & GET do not improve employment outcomes.

    Perhaps more significantly, and of more interest to many, the report includes a large section discussing research in relation to PEM in which it e.g. cites the Lights' work, and it discusses CPET tests including explaining the importance of a two-day CPET test (rather than a one-day test) to demonstrate a post exertion reaction! (It seems that they've taken notice of our submissions.)

    And it includes a large section discussing immune dysfunction (e.g. it discusses NK cell dysfunction).

    Sorry - I didn't make a note of all the page numbers - I'll try and find some quotes later when I'm on my PC.
     
    Last edited: Feb 13, 2015
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