August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Well, I like the IOM report! Who do I thank?

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

  1. Sasha

    Sasha Fine, thank you

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    Still not sure either way about the 'SEID' thing - pros and cons there - but so much to like otherwise:

    • ding, dong, 'CFS' is dead!
    • clear statement that this is an organic disease, not somatization
    • clear diagnostic criteria with PEM non-negotiable
    • criteria are simple enough for any doctor to diagnose - no more waiting ten years to stumble across a specialist
    • not too many symptoms so excludes too many misdiagnosed psychiatric patients (as Lenny Jason wanted)
    • criteria aren't criteria of exclusion, which is a huge thing - we're not just what's left over
    • CBT/GET given a kicking
    • heavy criticism of how patients have been treated and the poor funding
    • heavy-duty federal report

    Et cetera.

    I watched the video (scroll down a bit) of the launch and was very impressed by the attitude of the panel. These people are on our side. They're encouraging us to use it to 'act up'. And they worked for a year on this FOR FREE!

    Who do I email to thank the panel?
     
    Last edited: Feb 12, 2015
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  2. alex3619

    alex3619 Senior Member

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    I agree with all those likes, @Sasha. I am still reserving judgement till I am done reading it, but there can be no doubt there are many positives. There will undoubtedly be problems, but then again I cannot see any report like this being produced that is without problems ... we need to understand the mechanisms to really move forward.
     
  3. akrasia

    akrasia Senior Member

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    I agree with these points and would add that they got the tone of the document right.

    On another thread someone I think, ironically, posted the recommendation on p.245 for an SEID czar at HHS (we are ancien regime when it comes to special management of social crises--AIDS czar (Fauci) and drug czars various.). This recommendation is on p.245 of the report. It is another affirmation that IOM committee views this as a situation worthy of exceptional attention and I think it's an excellent suggestion.


    This thread should be devoted to the positive aspects of the report. But I'll sneak in 2 reservations: I wish they had spent more time querying the outbreaks and had stressed that not only was the disease not psychological or a figment of someone's imagination but that it wasn't maintained by ANY patient behaviors or attitudes.

    This would have slammed the door completely on the BPS.
     
  4. alex3619

    alex3619 Senior Member

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    I doubt it. It would merely be another point for controversy, though helpful to our situation. BPS and psychogenic claims will not go away any time soon, no matter how much they are discredited time and again.

    What may well be the case though is that some of the ancillary documents, including the doctors guide, may give scope for further enhancement of the message.
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    Surely you can manage any illness badly?
     
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  6. Sasha

    Sasha Fine, thank you

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    I think there's a lot to be thankful for. I think that people are so focused (understandably) on the name that they're missing the huge benefits that the report brings.

    The name will be there for two or three years and then we'll have more research and it will be reviewed and changed, I think. In the big picture, it's a small issue (and as many people have said, the name ME hasn't helped us much in the UK).
     
  7. Sidereal

    Sidereal Senior Member

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    I totally agree we should keep these people on our side. They've produced a very good, useful, quotable report from a reputable governmental institution that can't be easily dismissed by ME skeptics. I think they've done a great service to the community, all things considered. The name is inappropriate but I suspect it won't stick. So perhaps an email writing campaign thanking them for the good bits is in order.
     
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  8. akrasia

    akrasia Senior Member

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    Yes, but "mismanagement or psychiatrically described self deception, lies at the heart of the BPS view on m.e.
    It is what they think undergirds the disease and perpetuates it.

    There are a lot threads on PR devoted to this.
     
  9. worldbackwards

    worldbackwards A unique snowflake

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    Yes, I know that well enough, but the point was that behaviours can maintain an illness (including this one, just not in the way they think they do). I just think you're being a bit too broad.

    Don't mind me, I'm just being a pedant.
     
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  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    Can you give an example? I'm not sure I understand.
     
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  11. Scarecrow

    Scarecrow Revolting Peasant

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    Great news, Dorothy. Now all we need to do is find those ruby slippers. Then we can all go home!
     
  12. worldbackwards

    worldbackwards A unique snowflake

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    I think you probably do. Say, if you got up now and ran around for a bit, would you expect to feel well?

    Pedantic, see.
     
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  13. Roseblossom

    Roseblossom

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  14. Iquitos

    Iquitos Senior Member

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    At about 5" into the video you referenced there is a list of people who contributed to or reviewed the report. It includes Dan Peterson and Linda Bateman and many more. You could start there, to thank them. Where are their email addresses? I recall that at the end of the CCC document, their email addresses were listed. And the presenter, Ellen Clayton, of course.
     
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  15. PennyIA

    PennyIA Senior Member

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    Yes, but sadly, behaviors don't always FIX the issue either... so it doesn't matter if I take 3 months off and remain lying still in a dark, quiet room with no responsibilities... I still don't get well. That means that behavior can only worsen it and good behavior doesn't fix it.
     
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  16. Sasha

    Sasha Fine, thank you

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    Forgot you were one of the original cast!
     
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  17. Sasha

    Sasha Fine, thank you

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    There's such a shedload of people on that list that I think it might be better to email to a single point-person and ask them to pass on the thanks (they've probably got a mailbase set up or something).

    @jspotila, what do you think?
     
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  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Actually, I must be particularly daft today since I really had no idea as to what you meant. I must have missed something in the posts leading up to your comment. I'll have to go back and sort that out.
     
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  19. Scarecrow

    Scarecrow Revolting Peasant

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    Oh, I get it.......finally! :rolleyes:
     
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  20. Sean

    Sean Senior Member

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    Perhaps we could thank them in a single collective email, so they don't have to read several hundred individual ones.

    I realise not every patient here may wish to be part of it, so it does not need to be specifically associated the Phoenix Rising name.
     

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