Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. jstefl

    jstefl Senior Member

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    Brookfield, Wisconsin
    If exercise could cure me, I would be cured.

    I spent years doing my best to exercise my way back to health. I used to walk four times a day, anywhere from 3/4 to 1-1/4 miles at a time. I was walking at least three miles a day for over 12 years. I never got to the point where I could keep up with my wife, who at the time wasn't exercising at all.

    I was never able to increase my stamina to any measurable degree. I can't say that it made me worse keeping up that schedule, but it never made me any stronger either. Of course, if I pushed too hard the result was always PEM.

    I spent some time with several mental health types with absolutely no progress what so ever. I am firmly convinced that it is all about the money for them. If they could fix me, the money would stop, so where is the incentive? It is my opinion that the vast majority of these people are just parasites, raising the cost of health insurance for everybody.

    That sounds pretty harsh, but it is my firmly held belief.

    John
     
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  2. chipmunk1

    chipmunk1 Senior Member

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    if they don't do it for money are they doing it because they want society to enjoy their placebo like treatments?

    why do the operate at all if they have not much more than a placebo?
     
  3. Graham

    Graham Senior Moment

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    Why the need to retrain?
     
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  4. Sean

    Sean Senior Member

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    snigger, snigger...
     
  5. chipmunk1

    chipmunk1 Senior Member

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    ok i meant train not retrain.
     
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  6. Esther12

    Esther12 Senior Member

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    Last edited: Mar 7, 2015
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  7. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    so much headdesk.

    Does he consider it one of the "best interventions" for Cancer or heart disease as well? I would REALLY like to know this.
     
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  8. Kati

    Kati Patient in training

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    No @Kyla they only target disease which does not have measurable biomarkers and where they know they can infuse doubt in the medical profession because otherwise it would look them really bad.
     
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  9. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    I meant more whether you could get him to say just that on twitter, since he seems to be trying to argue for this garbage without actually saying he believes it to be psychological. - I think they have been very consciously NOT saying this publicly for a while
     
  10. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    ie - if he says "no" that wouldn't be a good treatment for Cancer, then ask him to elaborate on the difference
     
  11. Kati

    Kati Patient in training

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    Yes they have been really careful with what they say publicly. But they stick to their guns.their goals is to protect their research and prevent biomedical research.
     
  12. Dolphin

    Dolphin Senior Member

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  13. Dolphin

    Dolphin Senior Member

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  14. Dolphin

    Dolphin Senior Member

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    (In case anyone missed it)
    The journalist, David Tuller DrPH, has today posted a substantial piece on the PACE Trial:

    TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
    http://www.virology.ws/2015/10/21/trial-by-error-i/

    There's an introduction and summary at the start if you don't want to take on the whole thing.

    It's being discussed in this PR thread:
    http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

    ME Network have also posted their own summary piece:
    http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/
     
  15. Dolphin

    Dolphin Senior Member

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    (I also posted this on the thread discussing the PACE Trial's follow-up study)

    Two points:
    (i)
    If this is the case, why did they publish a study claiming 22% recovered.

    (ii)
    The CBT and GET models suggest any problems can be reversed by the therapies. It would be interesting if these therapies led to recovery: it would say the models are correct and that the illness is maintained by maladaptive illness beliefs and behaviours.
    However, with a rigid recovery definition (even their original one is still a bit loose e.g. 85 on SF-36 doesn't represent full functioning esp. if not working/studying full-time), it looks like the figures for recovery in the PACE trial would be very small suggesting the model doesn't fit for most people with the illness.

    It is a great shame that we can't get the recovery definition in the protocol to get an idea what percentage the model works for (my guess is it's a very low figure). The revised recovery definition doesn't tell us anything on this issue.
     
  16. Ellkaye

    Ellkaye

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    Some awful media depictions of exercise for CFS. Awful. Pure stupidity. Incredible that nobody has been able to put a stop to it. The impression given to the public is appalling.TATT - SEID - CFS/ME - ME/CFS- CFIDS until finally you get back to ME....
    A very very controlled message. A confused controlled message.
    Some very smart minds out there giving the impression of being on this..
    Well..... the band is playing on !!!
     
  17. Tom Kindlon

    Tom Kindlon Senior Member

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    This is on the ‪#‎PACEtrial‬ recovery criteria where fatigue scores or physical functioning scores of the "recovered" could be worse than the baseline scores (which were used to ensure the person had severe disabling fatigue)
     

    Attached Files:

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  18. Tom Kindlon

    Tom Kindlon Senior Member

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    FWIW:

    http://retractionwatch.com/2015/12/...uted-chronic-fatigue-research/#comment-879444

    in reply to this:

     
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  19. Dolphin

    Dolphin Senior Member

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  20. Dolphin

    Dolphin Senior Member

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    Source: IACFS/ME
    Date: December 22, 2015

    [IACFS/ME Newsletter Volume 8, Issue 3 – December 2015]

    From Fred Friedberg PhD

     
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