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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CFSAC Spring 2015

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

  1. Kati

    Kati Patient in training

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    It can only be speculations and anticipation but in the light of the incoming P2P report and the freshly baked IOM report, what do you think the next CFSAC will look like?

    What do you think the recommendations to HHS will look like?
     
    Sing and NK17 like this.
  2. Wally

    Wally Senior Member

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    I wonder if it will be a meeting open to the public to attend in person and if any of the HHS bigwigs (i.e. the N.I.H. Director, the Asst. Secretary or "gasp" the Secretary) will be making an appearance??? Perhaps the President might also be available for a few people to stop by for a cup of tea. Never hurts to ask. ;)

    Sure seems like some of the I.O.M.'s findings would warrant some additional attention from the HHS at this meeting. The platform is available, the date of the meeting has not yet been finalized and if it is held at HHS Headquarters in D.C., it would seem pretty easy for them to stop on by to let us know how things are shaking out. :D
     
  3. Kati

    Kati Patient in training

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    It could be a great opportunity for patients to gather and ACT UP. Demand research funding, demand a medical specialty to be assigned, demand access to treatments including Ampligen.
     
    beaker, Scarecrow, SpecialK82 and 5 others like this.
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    I hope there will be protests if it is not a full length in person meeting.
     
  5. lnester7

    lnester7 Seven

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    As a comunity now we need to list our concerns and then Prioritize and we make sure we look stronger and more toguether.
    1) Funding (be specific of area of research, I noticed the Sleep, PEM, excercise and OI should be prioritized since they are part of the criteria). My personal opinion is dig more into imflamatory markers also.
    2) ME Specialty / Centers of excelence.
    3) Aprove known so far Drugs: Anitivirals, Ampligen, OI meds....


    Make a clear 3 top priority from comunity and make sure we give this to the Comitee.
     
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  6. Kati

    Kati Patient in training

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    Sleep, PEM and Oi are mere manifestation of the disease and no causes, so I agree with you @Inester7
     
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  7. Sing

    Sing Senior Member

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    Priorities from my perspective would be follow up studies as required to establish some important finding. What great research projects so far only need an independent follow up study to "put them on the books"? I have a very poor memory, but isn't there a need for another 2 day exercise test, or one like the Lights did? It seems to me there are a number of important findings that just need the all important larger, independently run study to make them official.

    Let's think like scientists--if we could be excellent scientists reviewing the whole field of literature so far, what are the glaring gaps in knowledge? And I am not talking about THE CAUSE. If only they would give that pursuit up and put money and attention on the abnormalities in our system, biomarkers, and treatments. And when I say treatment, I do not mean THE TREATMENT, as if there is one master treatment which might solve all our problems, but better treatments for the various organ systems affected.

    However, the aspects which come to mind which do seem particularly important have to do with the mitochondrial function, the methylation problem, and then the low immune and endocrine systems. Maybe I should say immune system abnormalities because there seems to be both inflammation where it doesn't belong and a lack of immune functioning where it is needed.

    There are going to be limited funds and projects supported so the ones chosen had better be as useful as possible. What matters most now, what is achievable now, what are the next steps?
     
  8. SpecialK82

    SpecialK82 Ohio, USA

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    I'd like to see real focus on the newer brain imaging showing brain inflammation - I'd like to see a big study to replicate the small ones, and maybe when they rename this disease they'll put 'inflammation' back in the name when proven

    Secondly, I'd like to know if Ian Lipkin can re-submit his funding request for his gut biome study using SEID criteria and SEID patients (I know this IOM report is clinical criteria and not research (as I understand) , but maybe Dr Lipkin has some ideas on a fresh approach - the NIH needs to pony up here in a big way
     
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  9. Kati

    Kati Patient in training

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    It is imperative that CFSAC recommends no further research on behavior and coping, and the very overwhelming majority of the funding on biomedical aspects.

    I very much agree with @SpecialK82, brain imaging, microbiome, and I would add immune and gene expression.

    A post exercise gene expression study is going to start soon in Vancouver.

    I would hope that CFSAC recommends access to clinical trials and facilitation for our experts to initiate them. This means funding and support for our experts. A multi-center, international platform would be preferable.
     
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  10. SpecialK82

    SpecialK82 Ohio, USA

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    And I really don't want to hear the NIH say "the research $$'s are there but no one is applying for them" - Nope, I'm not buying it. They can do more to encourage research, much more - put up the big money and watch the researchers get interested!!
     
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