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We have the IOM Report - Now what?

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

  1. Valentijn

    Valentijn The Diabolic Logic

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    We have the report, and it's extremely good. Perhaps the name and definition could use a little improvement, but they're already vastly better than "CFS" and the Fukuda definition.

    So now how do we make sure that the NIH and CDC implement the recommendations regarding symptomatic treatment, including a lack of GET or primary use of anti-depressants and CBT as supposedly helping with the core disease?

    How do we make sure they start seriously funding the biological research which we need, perhaps starting with a call apologizing to Dr Lipkin and offering him some cash for his study?

    How do we ensure that they disseminate appropriate information to a variety of practitioners and in educational settings?

    How do we ensure that they actually adopt the new definition and name to replace the old ones?

    My concern is that these agencies have a habit of misrepresenting, underfunding, and neglecting our illness. And the pattern looks rather deliberate. How do we stop them if/when they try to ignore this report or block it from being implemented? Hopefully they're starting to get the message, and we won't have to fight them for it, but based on experience we need to be prepared and equipped to fight them for every inch of progress.
     
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  2. Scarecrow

    Scarecrow Annie Gsampel

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    Acting in a united way is often a better of way of getting a message across. I appreciate that not everyone is totally behind the report but there seems to be a substantial majority that have welcomed it. Can we put something together on behalf of PR (I'm not volunteering, mind!) and ask forum members if they want to endorse it?
     
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  3. Denise

    Denise Senior Member

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    @Valentijn - I have not made it through the report yet (am taking it slowly) so I reserve judgment on it.

    Your questions about "Now what" are very important ones.
    I hope this thread gets lots of thoughtful ideas.

    I would like to add
    Is there value in doing a compare and contrast with the AHRQ evidence review and the final P2P report (when it is out) with the IOM report?
    Given some of the comments by healthcare practitioners on articles - we have a tough road ahead of us in changing the views of many of them - how should that be done and by whom?
     
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  4. Scarecrow

    Scarecrow Annie Gsampel

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    :thumbsup:

    Since you mentioned Dr Lipkin, I was just reading Mindy Kitei's interview from last year:

    http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html

    During the last half of the interview, Dr Lipkin kept referring to Congress and he had this to say specifically:
    For chronic fatigue syndrome, read systemic exertion intolerance disease.

    Well?
     
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  5. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hi Valentijn, you raise some good questions especially about funding for Dr Lipkin (I'd like to see what was found in those CSF fluid samples), even if it was just cytokines as this would be evidence of CNS inflammation, potentially at least.

    Regarding the curiously over optimistic media Blitz by IOM panel members, please see my new post discussing my concern at Dr Bateman's comment's about the mind being important for SEID recovery and gaining your health back. They appear to mirror those of the CDC.

    http://forums.phoenixrising.me/inde...eid-do-not-reflect-severe-me-pathology.35542/
     
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  6. halcyon

    halcyon Senior Member

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    I think the only way forward is to put the screws to the NIH and get research funding increased substantially and immediately. It's the long game, but I feel like anything else is polishing brass on the titanic. Everything we need will flow from quality research findings eventually.

    Despite all the flaws and opposition, we now have (almost) two documents that spell out in black and white the fact that we are a large, severely sick population of patients and that quality research on the disease is nowhere to be found. The IOM findings spell this out in no uncertain terms.

    Unfortunately I don't have any bright ideas on how to actually push the NIH on increasing funding. I feel like this is the point that we all need to unite on as patients and figure something out.
     
  7. Scarecrow

    Scarecrow Annie Gsampel

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    I'm not a US citizen, so pardon my ignorance, but it may not be the NIH that decides on the amount of money spent on any particular disease. Rather I think they decide how to spend the budget they have been given.
     
  8. halcyon

    halcyon Senior Member

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    I am a US citizen and I have no idea either so don't feel bad.
     
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  9. halcyon

    halcyon Senior Member

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    Wikipedia says the following:

     
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  10. Nielk

    Nielk

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    What criteria will they use for future research?

    The P2P was supposed to come up with that until they changed the charge and left it out.

    Will they use the IOM criteria for research as well then?

    The Fukuda was supposed to be only for research but ended up being used for clinical criteria as well.

    If that's the case, the new criteria needs to be looked at with a different light.
     
    Last edited: Feb 12, 2015
  11. halcyon

    halcyon Senior Member

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    A good question and one the NIH will have to answer if it doesn't end up in the final draft of the P2P.
     

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