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American Society for Biochemistry and Molecular Biology article on ME

Discussion in 'General ME/CFS News' started by Webdog, Mar 8, 2018.

  1. Webdog

    Webdog Senior Member (Voting Rights)

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    Well written exhaustive article about ME/CFS, lack of funding, politics, advocacy and current research. Includes an excellent chronology of ME/CFS since 1934.

    http://www.asbmb.org/asbmbtoday/201803/Feature/ME/
     
    diwa, Alvin, MErmaid and 37 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    I skimmed through looking for references to PACE criticism, found it and left happy. Will read properly tomorrow. Thanks for the link.

    David Tuller's work listed as a 'key moment' in ME history.

    Then the next one was the re-analysis of PACE data.

    Couldn't agree more.
     
    ahimsa, Atle, Barry and 12 others like this.
  3. Allele

    Allele Senior Member (Voting Rights)

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    Wowser, that's amazingly accurate and comprehensive. We are truly and suddenly in a new era of journalism for ME.
     
  4. Forbin

    Forbin Senior Member (Voting Rights)

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    Great, comprehensive article on the disease. One of the very best I've read.
     
    ahimsa, EzzieD, Barry and 11 others like this.
  5. Trish

    Trish Moderator Staff Member

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    One of the best articles I've seen on ME - history, PACE, Tuller, NIH, OMF, current research, the need for more funding.
     
    ahimsa, TiredSam, EzzieD and 10 others like this.
  6. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Hey folks - lets show the journalist Lily Williams that wrote the article some love and comment on her article so she's inspired and directed by her editor to cover more ME. And share widely.

    Here is the comment I left for her:

    Thank you! Finally an article that exposes the iatrogenic harm the health care system perpetuates on people living with ME. In the very near future, there will be mass awareness of the gross negligence by our governments and failure of successive health leaders to stop the institutional bias that impedes equitable ME research funding and prevents access to health care. This article is another sign, and effort, to let the world know how the health care system sustains its marginalization and denigration of people living with ME. I look forward to you covering an apology from leaders for the decades of harm done to people with ME. Thank you for being part of making that change come to fruition.
     
    janice, ahimsa, EzzieD and 17 others like this.
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    We should at the very least click through so she can show the traffic, even if we don't have time to read the whole thing.
     
    ahimsa, WillowJ, Solstice and 10 others like this.
  8. dave30th

    dave30th Senior Member (Voting Rights)

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    Thanks for flagging it. I had talked to her a few months ago. She seemed like a smart young woman. She came into this reporting really knowing very little about the issue, so she's done a terrific job. by all means, shower the article with positive comments!!
     
    janice, ahimsa, WillowJ and 25 others like this.
  9. Chris

    Chris Established Member (Voting Rights)

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    "1990: The CDC receives more than 2,000 calls per month from the public requesting information about a flu that never goes away"

    - How do you make it go away? asked a CDC authority to another.
    - Well, we just called it chronic fatigue, that should do it.

    All joke aside, there is always some new aggravating detail I learn on our ugly past in articles like this one, and these 2000 calls per month - many of which I assume were calls for help - left of course with no response, no action, is the latest one. It makes it harder still to believe the CDC had no clue there was a nasty illness out there. Aggravating.

    Fantastic article
     
    ahimsa, EzzieD, Joh and 7 others like this.
  10. Barry

    Barry Senior Member (Voting Rights)

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    Excellent. Just one small observation - would have been nice if the Journal of Health Psychology's Special PACE edition had been noted in the timeline, and linked to, because it is also very important.
     
    Indigophoton, EzzieD, Jan and 5 others like this.
  11. Webdog

    Webdog Senior Member (Voting Rights)

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    Another event that might have been worthy of inclusion was the CDC removing GET and CBT from their treatment recommendations.
     
    Indigophoton, EzzieD, Jan and 4 others like this.
  12. TiredSam

    TiredSam Moderator Staff Member

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    Well at least they didn't claim that all the calls were from the same person.
     
    ahimsa, Hutan, EzzieD and 5 others like this.
  13. dave30th

    dave30th Senior Member (Voting Rights)

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    Well, and the 2016 highlight was really Alem Matthees' victory at the First-Tier Tribunal, which of course was what led to the reanalyses that she does highlight.
     
  14. Barry

    Barry Senior Member (Voting Rights)

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    Do you think you'll get the chance to see Alem during your trip @dave30th? If you do, and if it is feasible, it would be great to pass on the gratitude of ... well, everyone who has ME, or is family/friends of. He's definitely one of the greats.
     
    janice, MeSci, ukxmrv and 11 others like this.
  15. Joh

    Joh Senior Member (Voting Rights)

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    Short clip about the article on American Society for Biochemistry and Molecular Biology's twitter channel. Just one like so far:

     
    Snow Leopard, Binkie4, ahimsa and 9 others like this.
  16. Joh

    Joh Senior Member (Voting Rights)

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  17. Andy

    Andy Committee Member & Outreach

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    I've been in touch with Lily, the author of the article, and, dependent on full credit being given and a link back to the original article being in place, it is possible for this article to be republished. So does anybody have any suggestions of where she might approach or, ideally, any contacts in the media to help with this? Post below or PM me and I'll pass the info on.
     
    Esther12, WillowJ, Binkie4 and 7 others like this.
  18. Andy

    Andy Committee Member & Outreach

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    @Russell Fleming @Emily Taylor could you offer Lily any help in getting her article further distribution?
     
    Jan, Binkie4, Barry and 4 others like this.

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