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What do you think the IOM report missed? (Poll)

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Antares in NYC, Feb 10, 2015.

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What aspects of this disease you believe the IOM report missed?

  1. Immune dysfunction

    10 vote(s)
    62.5%
  2. Mitochondrial, methylation and toxicity

    8 vote(s)
    50.0%
  3. Genetic predispositions

    2 vote(s)
    12.5%
  4. Gastrointestinal and microbiome

    8 vote(s)
    50.0%
  5. Viral and pathogenic triggers

    5 vote(s)
    31.3%
  6. Pain and inflammation

    8 vote(s)
    50.0%
  7. Thyroid and hormones

    3 vote(s)
    18.8%
  8. Neurological implications

    7 vote(s)
    43.8%
  9. Treatment recommendations

    5 vote(s)
    31.3%
  10. Funding for research

    8 vote(s)
    50.0%
  11. Co-infections

    5 vote(s)
    31.3%
  12. Other (please elaborate)

    2 vote(s)
    12.5%
Multiple votes are allowed.
  1. Antares in NYC

    Antares in NYC Senior Member

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    Today we finally learned the findings and recommendations of the IOM report on ME/CFS, including a new term, SEID, that's already fostering a major debate.

    The overall tone of the report and presentation was positive, giving this disease the recognition and attention it deserves, and criticizing the serious neglect from the medical authorities for decades. For your reference, here's a link to the Powerpoint presentation:
    http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf

    The report highlights mostly focused on a concrete number of aspects of this illness, namely post-exertional malaise, physical and cognitive impairments, unrefreshing sleep, and orthostatic intolerance.
    This left many serious aspects of our condition, some of which are considered to be at the core of the illness, as secondary for diagnostics criteria.

    I would like to start an informal poll to assess what the Phoenix Rising ME/CFS (SEID?) community thinks was left behind from the report, hoping this leads to an eventual response from patient groups to the IOM recommendations. While today's news gave us hope that the tide is turning on how the disease is conceived, it should be a starting point to build on this momentum.
    Let's talk about it.
     
    Last edited: Feb 10, 2015
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  2. beaker

    beaker ME/cfs 1986

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    Do you mean discussed in the report or listed as criteria ?
    That's a thick report going to take awhile to get through the whole thing.
     
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  3. Antares in NYC

    Antares in NYC Senior Member

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    Criteria.
    I read the full presentation, but not the full report. It will take me months to read with all this stupid brain fog. :confused:

    I'll make a note in the opening post.
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    I'd like to check more than 3!

    Sushi
     
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  5. Antares in NYC

    Antares in NYC Senior Member

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    I can change the poll to allow for multiple choices, no problem.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Funding, viral & pathogens, immune and mitochondria issues (but I could only pick three!)
     
  7. Sean

    Sean Senior Member

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    Please don't rush this one, good people. It is going to take time to digest that extensive report and get to grips with it all. We can't do that properly overnight, or in a few days.
     
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  8. Antares in NYC

    Antares in NYC Senior Member

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    It's not intended to be a formal or scientific poll, Sean, just our impressions after listening to the IOM's presentation today, or reading the report highlights.
     
    Last edited: Feb 10, 2015
  9. Sean

    Sean Senior Member

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    My comment still stands. Give it the due consideration it deserves. For all our sakes.
     
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  10. alex3619

    alex3619 Senior Member

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    I chose other because the biggest issue is the scope of the report was wrong, coupled with the methodology being flawed. Everything else follows. Like with the P2P I was worried we would get far worse from poor methodology. It is interesting that independent doctors and researchers who actually look at the evidence see the illness in a whole new light.
     
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  11. GracieJ

    GracieJ Senior Member

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    Can I answer in about a week?
     
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  12. taniaaust1

    taniaaust1 Senior Member

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    Where is the report written? (Im completely lost here, I havent found it yet. I cant watch videos on my computer).
     
  13. beaker

    beaker ME/cfs 1986

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    Go to THIS PAGE . On right hand side at top there's a button to download it or read it online.
     
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  14. justy

    justy Donate Advocate Demonstrate

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    I have only skimmed the report.
    Neurocognitive does not sum up neurological issues - only basic problems such as concentration, confusion aphasia etc, which is a start, but doesn't include seizures, brain lesions, myoclonus etc.

    Is there a section on neuropathic type pain? (burning, stabbing, crawling, pins and needles and numbness?)

    Is there a discussion on allergy and MCS? again, I have only skimmed it so may be missing vital points. If these are missing that is a big shame.
     
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  15. eafw

    eafw Senior Member

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    I do realise everyone has a different capacity, but the report is not quite as thick as it seems.

    That is - the main content is only a part of it and can be meaningfully read while ignoring the introductory waffle, the pages of references and even the paediatric sections.

    To add, the report iself is quite good but the issue is in the proposed new name and the diagnostics which actually seem to undermine the understanding of the condition that they show in the report.
     
    Antares in NYC likes this.
  16. Joss

    Joss

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    The fact that some people have M.E. I mean some people, on autopsy, have been shown to have the 'itis' bit and have complained of muscle pain and, therefore, literally had M.E. and we don't know how many people who are not yet dead do in fact have M.E.
     
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  17. ukxmrv

    ukxmrv Senior Member

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    How to explain the outbreaks of ME in the 20th century

    Differences in patients with acute viral onset vs slow onset

    Jason's work on ME vs CFS criterias
     
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