New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Sign this e-card by 28 Feb to thank the IOM committee!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sasha, Feb 14, 2015.

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  1. Sasha

    Sasha Fine, thank you

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    @Scarecrow has kindly set up an e-card that each of us can sign to thank the IOM committee for working hard for us - for a year, unpaid! - and coming up with a powerful, groundbreaking report that has federal clout and that we can use for advocacy.

    The committee included familiar, big names from the ME/CFS world such as Dr Nancy Klimas and Dr Ron Davis but no-one who saw Dr Ellen Clayton, the committee chair, in action at the launch of the report, could doubt that even the newcomers to the field were thoroughly on our side and anxious to give us the ammo we need to get diagnosis, funding, and respect.

    Sign the card here: http://www.groupcard.com/c/52DxE5A73Uz

    There may be bits and bobs that you want to criticise in the report - the name is proving contentious, of course - but a thank-you card is not the place for that! Please stick to words of thanks and appreciation in your message on the card.
     
    Last edited: Feb 14, 2015
  2. Sasha

    Sasha Fine, thank you

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    We'd like to get as many signatories as we can! Please help put the word out.

    Just tagging a few useful people... @Tuha (anywhere you'd like to mention it on Facebook?), @Tom Kindlon (are you able to help with Co-cure?)...

    Anyone from anywhere in the world can sign, of course...
     
    barbc56 likes this.
  3. Sasha

    Sasha Fine, thank you

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    Is anyone registered on Prohealth or any of the other forums who could post there?

    I'm Facebook-incapable but here are some FB pages that have given positive coverage to the IOM and who I think would be happy to have people post the above message. Can anyone here do that?

    https://www.facebook.com/OpenMedicineFoundation/posts/645885408849217

    https://www.facebook.com/canaryfilm/posts/524301131040958

    https://www.facebook.com/CFSDocumentary/posts/903958699634986

    https://www.facebook.com/CFIDSAssn/posts/10152738108637108

    https://www.facebook.com/MEResearchUK/posts/919161168129141

    Slightly random there but a good range...
     
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  4. Ember

    Ember Senior Member

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    Dr. Peterson was a reviewer: "Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release."
     
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  5. Sasha

    Sasha Fine, thank you

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    Thanks, Ember - I've swapped in Ron Davis (a nice person to be able to swap in!).
     
  6. Sasha

    Sasha Fine, thank you

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    Quite a few signatories already... don't be shy, folks! :)
     
    barbc56 likes this.
  7. Sean

    Sean Senior Member

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    Signed. :thumbsup::hug:
     
  8. Tom Kindlon

    Tom Kindlon Senior Member

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    Done
     
  9. Min

    Min Guest

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    No way am I thanking them for wasting a million dollars (that should have gone to biomedical research ) on this pig's ear of a report deliberately designed to bury the neurological illness myalgic encephalomyelitis within a daft 'SEID' diagnosis.
     
    Last edited: Feb 14, 2015
    IanMcLachlan and Wildcat like this.
  10. SOC

    SOC

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    Good thing thanking people for their hard work is an entirely voluntary activity, then.
     
    barbc56, L'engle, Roseblossom and 4 others like this.
  11. Valentijn

    Valentijn Senior Member

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    HHS wasted the $1M, not the IOM panel. And the IOM panel did an excellent job with the task which they were given.
     
    lycaena, Sparrow, barbc56 and 11 others like this.
  12. Ember

    Ember Senior Member

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    In 2013, our experts committed to adopt the CCC and “continue to refine and update the case definition as scientific knowledge advances; for example, this may include consideration of the 2011 ME International Consensus Criteria (Carruthers et al, Journal of Internal Medicine, 2011). In 2015, the IOM Committee gave us a truncated version of the CCC with no expectation of update over the next five years: "Brownie, you're doing a heckuva job."
     
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  13. Valentijn

    Valentijn Senior Member

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    Yup, the HHS screwed up (probably deliberately) by paying US$1M to do a job which the CCC had already done for free. But that doesn't reflect upon the IOM. The IOM is not part of HHS at all, but are an outside group which was hired to do a job. It was in no way part of their job description to rubber stamp the CCC and refund US$999,000.

    The IOM were given a job to independently review the scientific literature and come up with a name and diagnostic criteria solidly based in that literature. Regardless of HHS screwing around, the IOM did an extremely good job - probably a good enough job of it to seriously piss off certain people at HHS, and likely using CCC as their starting point.

    The IOM is on our side, and we now have an official document commissioned by a government agency which is extremely supportive of the biological basis for ME/SEID, and extremely dismissive of the BPS bullshit.

    What more do people want? A magic wand where we get a perfect name and definition? Even the IOM report-haters (okay, ESPECIALLY the report-haters) wouldn't be able to agree on a name or definition. Hence I think it's pretty damned impressive that we now have a name which at least focuses on PEM and is labeled as a systemic disease.

    How about instead of 100% fighting something which is 95% good, people start doing something useful, and constructively use that 95% good thing as a solid and persuasive basis for making real progress. HHS isn't going to cave and use CCC or ICC in the near future - so instead of fighting the IOM report and giving HHS another excuse to prevent ANY progress, why not use that IOM report to force HHS to get off of its ass and implement some major changes and some major funding of biological research?

    Please explain it to me, because I honestly do not understand the rationale behind completely opposing the IOM report which we now have.
     
    Last edited: Feb 15, 2015
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  14. Sasha

    Sasha Fine, thank you

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    Thanks, Tom! :thumbsup:
     
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  15. Sasha

    Sasha Fine, thank you

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    Lenny Jason (on our side if ever anyone was) has pointed out the problem with having so many symptoms necessary for clinical diagnosis - the new definition takes the key ones, meaning that it's less likely to include people who don't have ME but an undiagnosed primary psychiatric illness, and means that the estimated 90% of undiagnosed PWME in the US can now get a diagnosis without having to wait years to stumble across one of only a dozen specialists in a country of 300 million people. Meanwhile, researchers can continue to use the CCC or ICC if they want to - the SEID criteria are for clinical diagnosis.

    It's not correct that there's no expectation of an update over the next five years - the five years has been given as a maximum and it's clear that the committee are hoping that that will be more like two or three years. In fact, the committee hope that the report will help make that more like two or three years. This is what Dr Ellen Clayton, the committee chair, said at the launch:

    “We really think this is an area where things are moving relatively quickly. If, as we hope, what this report does is elicit greater interest and a greater recognition from entities that they need to be funding more research, and if in fact the research ramps up in the way we hope that it will, it would be lovely if we knew enough in the next 2 or 3 years that it was time to reexamine this.”

    That committee spent a whole year, unpaid, and worked their asses off to do their absolute best for patients. I think that shines out of everything they've said and written, and that's why I'm thanking them. You don't have to think they did a 100% perfect job to be grateful to them.

    And as @Valentijn said, it's not fair to blame the committee for the fact that the HHS spent the $1m.

    And if anyone doesn't want to sign, that's fine.

    But I think this report is a reason to get the flags out :balloons: and I hope that anyone who is also grateful to the committee will show it by signing the card. It only takes a minute!

    http://www.groupcard.com/c/52DxE5A73Uz
     
    Last edited: Feb 15, 2015
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  16. Sasha

    Sasha Fine, thank you

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    I've just been reading the messages that have been posted overnight and there are some lovely ones (38 now). I especially liked this one:

    'Hope is patience with the lamp lit. Much needed after a long winter.'
     
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  17. Ember

    Ember Senior Member

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    The CCC and ICC may have been “done for free.” But they did not appear without cost. The ICC separates ME from CFS. What is ME/SEID?
     
    Wildcat and Min like this.
  18. Ember

    Ember Senior Member

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    Dr. Jason is not a clinician. The new criteria remove all exclusions. Dr. Enlander points out that the criteria are “a truncated version of the Canadian Consensus Criteria (CCC), truncated in a manner that allows the over-diagnosis of the disease. These criteria would also allow the diagnosis to include psychiatric conditions that are specifically excluded by both the Fukuda and CCC.”
     
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  19. Sasha

    Sasha Fine, thank you

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    @Ember, all of these points have been discussed on other threads and addressed. I understand that you may not agree with others' opinions and their counterarguments to your view (and Dr Enlander's), which is fine.

    I don't think this thread is the place to rehash all those arguments. If you don't want to sign the card, that's your choice.

    I think it's more appropriate to keep this thread for discussion among people who would like to sign the card. People are reading the other threads and are capable of making their own minds up about whether they're pleased with the report and would like to show their gratitude to the committee.
     
    SOC, barbc56, Roseblossom and 6 others like this.
  20. GracieJ

    GracieJ Senior Member

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    Done. I am so grateful for the people on this site who come up with things like this. My brain is focused on survival.
     
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