Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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CDC Workgroup: Update via SolveCFS

Discussion in 'General ME/CFS News' started by mango, Aug 13, 2016.

  1. mango

    mango Senior Member

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    Read full article here:
    http://solvecfs.org/cdc-workgroup-on-mecfs-update-2/
     
    aimossy, Hutan, Webdog and 6 others like this.
  2. duncan

    duncan Senior Member

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    Beth Unger is overseeing the effort?

    Oh, boy....er, OH! BOY!
     
    Valentijn, taniaaust1, Nielk and 2 others like this.
  3. JaimeS

    JaimeS Senior Member

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    Very excited about this!
     
  4. HowToEscape?

    HowToEscape? Senior Member

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    This is a good or bad thing? I have zero clue who Beth Unger is.
     
  5. duncan

    duncan Senior Member

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    A good start requiring little effort - and demonstrating some sorely needed good faith - would be ripping down the current CDC CFS webpage and replacing it with something that reflects the findings of the IOM.

    I hope we don't have to wait another year and a half for that.

    Maybe Beth Unger will have good news concerning the CDC's CFS webpage in September?
     
  6. duncan

    duncan Senior Member

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    That may depend on who one asks. Perhaps this would be a good subject for a poll. :)
     
    actup and JaimeS like this.
  7. Horizon

    Horizon Senior Member

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    Is that what this is? Regarding info on site? Didn't really understand technical
     
  8. duncan

    duncan Senior Member

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    I doubt it. Just wishful thinking on my part, I fear.

    They should have modified the CDC CFS web info long ago, at least to get rid of references to CBT and GET.
     
  9. Horizon

    Horizon Senior Member

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    I doubt they'll ever get rid of it. I wouldn't be offended if its complementary added on to it like it can be for cancer or any difficult condition but hate seeing it as treatment.
     
    duncan likes this.
  10. Groggy Doggy

    Groggy Doggy Senior Member

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    I think if she dumped the "ME is a virus" theory, then she might actually understand ME and be more useful to us. The CDC site seems to reflect her current "confusion" about ME, which unfortunately gets propagated out to the rest of society.
     
    duncan likes this.
  11. Deborah Kavounas

    Deborah Kavounas

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    Yes, the TDW members will be meeting in late September to work on the web site revision. We will give our input. The CDC has the final say on everything. We are prepared and will advocate for the best possible revisions.
     
    Izola, Comet, Snowdrop and 12 others like this.
  12. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    probably a bad thing but I guess it could be worst.

    When she got her position at CDC when it comes to us, there was so much hope about that she would be better then the last person. She's been there a long time now and NOTHING has changed, still crap at their website on our illness. Some of how she's put things at times hasnt been much liked...she's been a bit all over the place.

    Seeing she hasnt got a good grip on this illness by now, I dont think she will never really fully understand it.

    I really cant see much of the change we need with her. Things are likely to just stay the same old. She doesnt seem to be much of a doer.. no progress has gone forward. I honestly cant see anyone from the CDC helping properly to move things forward with this illness. If they are heading up things we can expect GET and CBT still to be being put as ME treatments for probably the next 10 years. The CDC has always worked hard to play down our illness.

    dont expect much to come out of these meetings with CDC.
     
    Last edited: Aug 14, 2016
  13. mango

    mango Senior Member

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    Here's one of her infamous quotes, from a CFSAC meeting in 2010:
    www.youtube.com/watch?v=pJslacrabWE
     
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  14. Groggy Doggy

    Groggy Doggy Senior Member

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    Do you still think she feels this way? In the video she is essentially politely saying that the one million people with ME (diagnosed or yet to be diagnosed) are hypochondriacs.

    Is this the best person that our government can hire and retain to represent ME? In private industry you have to solve problems, not deny them, else you get fired.
     
    Last edited: Aug 14, 2016
  15. Groggy Doggy

    Groggy Doggy Senior Member

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    jokingly....can we hire hackers to "fix" the web pages?
     
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  16. mango

    mango Senior Member

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    The last time I heard her talk was during the CDC Grand Rounds in February. And no, sadly my impression would be that the way she feels and thinks about it hasn't changed. I would love to be wrong about that, of course!

    Also, I belive she was a co-author of the Reeves criteria? And she's been involved in several CFS studies over the years that have a very strong BPS smell to them... Here are a few examples:
    I personally don't like that she still seems to be very willing to promote CBT and GET, and I don't like that she seems to not "get" what PEM truly is (for example, saying that they haven't yet been able to define what PEM is, and refusing to include the 2-day CPET test in the multi-center study etc).

    ETA: Here's the thread on the Grand Rounds, including transcript:
    http://forums.phoenixrising.me/inde...ut-nih-study-during-cdc’s-grand-rounds.43026/
     
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  17. Groggy Doggy

    Groggy Doggy Senior Member

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    I guess she does what her boss tells her to do, since that is how government jobs usually work. Keeping the 'status quo' is the norm.
     
    duncan likes this.
  18. JaimeS

    JaimeS Senior Member

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    My impression of Unger is that she has changed her mind over time. If you look at older studies you might be offended, but the closer you get to modern-day research the better she looks. ;)

    Recently she gave a presentation demonstrating that ME patients had 'emotional functioning' abilities within the normal range, despite all other functional impairments.

    I'm cautiously hopeful.
     
  19. *GG*

    *GG* Senior Member

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    Great idea, doubt it would be that hard to do, we are talking about the Gov't here! Not competent at much!!

    GG
     
    Groggy Doggy likes this.
  20. Nielk

    Nielk

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    Is there a meeting today on this? Is Phoenix rising attending the meeting?
     

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