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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Medscape Has Published Another Miriam Tucker ME/CFS Article

Discussion in 'General ME/CFS News' started by Never Give Up, Jun 16, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.


    She was the only press member to ask a question at this morning's P2P briefing.

    It's a basic overview of the P2P report. The last bit is an interesting description of future steps in the process.

    "In a statement to Medscape Medical News, the NIH Office of Disease Prevention said although panel reports are not policy statements of the federal government, the NIH carefully considers the recommendations that are outlined in the final report. In addition, approximately 6 to 8 months after publication of a panel report, the NIH Office of Disease Prevention convenes a meeting of federal agencies to consider actions that might be taken to address the panel’s recommendations."
  2. jimells

    jimells Senior Member

    northern Maine
    Of course. We have to have more meetings and conferences and reports on the reports we already have. Yup. That's government-in-action, all right.

    I listened to the press briefing. They shouldn't have bothered. It was mostly somebody reading from the first few pages. There was only one question. Jennie writes on her website that she identified herself as a journalist and tried six times to get recognized, to no avail. Figures.

    One of the panelists revealed their profound ignorance of the history of the illness by insisting that "CFS" was the original name and that "ME" is the johnny-come-lately. For me, this really underscores exactly why the entire concept of a non-expert "jury" (Guilty As Charged?) is completely non-scientific and a real insult to the intelligence of the patient community.

    The panelists were appalled and moved by the stories they heard. They were also surprised at the volume of comments (maybe around 300 pages? I can't remember now). But they made it clear they were not going one inch outside the box so carefully drawn by NIH - just what one expects from any well-entrenched academic who prefers to stay that way. (not a judgement - just an observation) I view them as sincere pawns being used by NIH to make it look like they are doing something when really they are just stonewalling, again.
  3. Simon


    Monmouth, UK
    Great opportunity to lobby for proper NIH funding of mecfs research?
    I'm in the UK and have only a hazy idea of how things work across the atlantic, but this looks to me like a great focus for lobbying the NIH to put appropriate funding into mecfs, as opposed to the paltry $5m a year we get now.
    As I see it
    • Part of the NIH convenes an independent report into state of mecfs research
    • Report concludes mecfs research not in a good way, recommends many new approaches and calls for new funding
    • NIH to consider recommendateions & NIH Office of Diseaase to convene meeting of federal agencies
    • Both the above are times NIH will explicitly consider how to respond to mecfs in the light of its commissioned report saying much more research needed and more funding too
    • Seems like the perfect chance to call for much more funding and highlight the woeful level of funding of mecfs relative to other serious illnesses like MS and Rheumatoid Arthritis
    I know there are a couple of petitions already calling on Congress to up funding and thought this report creates opportunities to focus the demands. For example, would it be appropriate to ask Representatives and Senators to write to the NIH asking them to up funding dramatically when they respond to the report they commissioned themselves later this year? I also fear that without pressure the NIH won't do much in response to the report.

    I'm tired and don't think I'm explaining what I mean terribly well, but what do others think, especially those in the US?
    Last edited: Jun 21, 2015
  4. Sasha

    Sasha Fine, thank you

    I think this deserves its own thread, Simon, with the title you give it above. It's a good idea and deserves attention.
    catly, Jennifer J, Sean and 1 other person like this.
  5. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    @jimells, you forgot

    because one could not possibly convene a meeting in less than 6 months.
    jimells likes this.
  6. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    Let us convene a meeting about convening a meeting! ;)
    Little Bluestem and Sean like this.
  7. Sean

    Sean Senior Member

    So, who is going to take notes? We have to have a meeting about that first.

    And what colour the seats need to be.
    Coffee or tea?
    Blue or red conference room?
    Monday or Thursday?
    Does the carpet need a haircut?
    Doorknobs: Are they a thing?
    Is my arse fat in these track pants?

    Get busy, people, we have important matters to decide.
    Sasha, Valentijn and SOC like this.
  8. Valentijn

    Valentijn Senior Member

    And does the carpet match the drapes? :D
    Sean likes this.
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Not me
    Tea - PG tips with sugar and cream
    Yes - it will make that shag look more modern
    There should be someone to sanitize the doorknobs every time anyone uses them
    No more than in any other pants

    ETA: Oops, Valentijn replies before I did. The questions were:
    Last edited: Jun 23, 2015
    Sean likes this.
  10. Sean

    Sean Senior Member

    Little Bluestem likes this.

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