1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. Sasha

    Sasha Fine, thank you

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    who is speaking now? (Lady with long curly hair).
  2. Nielk

    Nielk

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    I think that's Eileen Holderman
  3. Nielk

    Nielk

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  4. Sasha

    Sasha Fine, thank you

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    Thanks - she said some really good stuff (got my internet back!).
    Nielk likes this.
  5. Nielk

    Nielk

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    Yes, She did. I liked what she says about the pictures on the CDC website showing people wearing suits and fit. she said they should show people with varied severity of the illness; like in bed, to the couch to the car..etc
    justinreilly, Sing and snowathlete like this.
  6. Sasha

    Sasha Fine, thank you

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    Yes, and I thought the rationale for having such pix - the intention to be upbeat - was interesting. They obviously hadn't thought through that if you have a disease that's dismissed as trivial, the last thing you want to communicate about it is a more upbeat message than is justified.
  7. Sasha

    Sasha Fine, thank you

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    Who is that very good guy with the longish grey hair pushing the primer? I like his persistence!
  8. Nielk

    Nielk

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    Unger: The CCC is complex and hard to understand.

    Holderman: If the patients understand the CCC, certainly physicians should be able to understand it.
  9. Nielk

    Nielk

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    Krafchick
  10. Sasha

    Sasha Fine, thank you

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    Thanks!
  11. Nielk

    Nielk

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    Aileen Perry (of CMM and patient) quotes Dr. Snell saying that on repeated CPET tests the recovery time is so long. He has not seen this in any other illness. (marker?)
    justinreilly, snowathlete and Sasha like this.
  12. Nielk

    Nielk

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    Holderman: Maybe we should wait with further research until we iron out a true case definition?
  13. Nielk

    Nielk

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    This is what I am hearing: If we recommend it, they will accept it - NOT!
    snowathlete likes this.
  14. Sasha

    Sasha Fine, thank you

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    :D

    Not actually sure what I'm hearing. Did Nancy Lee say that the Sec of Health had actually responded to the prior recommendations and that those responses were now on the CFSAC website? Couldn't really believe my ears - sure I must have got that wrong.
  15. Sasha

    Sasha Fine, thank you

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    Thought that was kind of appalling that even Gaillen Marshall didn't consider himself to have got a straight answer on whether they've been submitting the recommendations wrongly for 10 years without ever being told that - pretty jaw-dropping...
  16. Nielk

    Nielk

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    It sounded to me like their recommendations were mostly left on deaf ears.
    snowathlete likes this.
  17. Mark

    Mark Acting CEO

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    Yup - for the last 3 meetings, that was news to me too. Just looking at that now: presence of a PDF link at the bottom of the page on the latest meeting seems to confirm that's correct...let's see what the response was...
    http://www.hhs.gov/advcomcfs/recommendations/index.html
  18. Sasha

    Sasha Fine, thank you

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    Had a quick look at the one asking for more NIH funding and it seemed to be one of those govt-speak deflection answers - defining what the NIH does, talking about what money is, talking about the colour of the ink it's printed with, etc. - the kind of stuff I get from my MP, basically. o_O

    Perhaps I do it a disservice - just gave it a quick skim!
    justinreilly likes this.
  19. Sasha

    Sasha Fine, thank you

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  20. snowathlete

    snowathlete

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    My question would be: who gets an upbeat feeling when they look at that? It's not the patients, they get downbeat because it trivializes the illness and portrays it as not being that bad. The only people who look at it and feel upbeat are these committee members because they can pretend that this is us, and not feel bad about it - not be faced with the reality of the illness.

    If it is an innocent mistake then these people are shockingly insensitive and unthinking. That’s the best case scenario.
    I think it is more likely that it is just spin to keep the reality suppressed.
    justinreilly and Valentijn like this.

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