When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
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NIH post-infectious CFS study

Discussion in 'Active Clinical Studies' started by A.B., Feb 7, 2016.

  1. Kati

    Kati Patient in training

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    Well, @Nielk, it goes likewise, I don't know how repeating your opinion time and time again will change anything.
     
  2. BurnA

    BurnA Senior Member

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    What an awful thing to say to someone who is contributing to these forums and providing insightful opinions time and time again, despite relentlessly being challenged by some people.
     
  3. viggster

    viggster Senior Member

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    You're spreading misinformation. I think that is distinctly unhelpful to the goal of furthering research into ME.
     
  4. BurnA

    BurnA Senior Member

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    It's not the first time this has happened, it happened to me too by the same person.
     
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  5. Sasha

    Sasha Fine, thank you

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    Update in an article by Cort, interviewing Vicky Whittemore:

    http://www.healthrising.org/blog/2016/08/30/nih-chronic-fatigue-syndrome-change-coming/
     
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  6. shannah

    shannah Senior Member

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    Sasha likes this.
  7. viggster

    viggster Senior Member

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    Updated Clinicaltrials.gov listing is here: https://clinicaltrials.gov/ct2/show/NCT02669212

    Looks like they've upped the number of subjects: 50 ME/CFS patients, 50 recovered Lyme patients, 50 healthy controls. Up to another 36 will be in the PEM focus group.

    Inclusion criteria confirm use of CCC to select patients for exercise testing.
     
  8. Izola

    Izola Senior Member

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    Hi: I am having some very bad brain and function these day but I wanted to mention that Cort had an article (+ interview?) about Dr. Daniel Peterson a while back. I can't remember much except that Dr. Peterson was interested in something like the biologic markers left behind from pathogens in ME pts as opposed to others who's diseases didn't result in the currently often life long Kafkaesqueian nightmare Hell we end up living. He was collaborating w/ NIH (?) and I think, Lipkin.

    I'm sorry I don't have the cite :( but it is on PR probably about 2011 or 2012. Iz
     
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  9. Simon

    Simon

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    That's great. The substantial increase in sample size gives them a much better shot of detecting real differences, especially if there are subgroups (which Nath has already says he expects to find).

    And I'm a big fan of the PEM focus group - I don't think we yet have a good way for defining/measuring PEM in terms of questionnaires, in large part because questionnaires are drawn up by researchers. What's needed is this - a bottom up approach with patients given the chance to discuss PEM and how best to describe it among themselves. I hope this will eventually lead to better PEM questionnaires. I think that some studies find quite high rates of PEM (eg with depression) and suspect one reason for that is loose PEM descriptions, because I'm not sure that people with depression experience PEM like PWME
     
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  10. A.B.

    A.B. Senior Member

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    This NIH study is looking a lot better now with a larger sample size and a PEM group built with the advice from experts.
     
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  11. Sidereal

    Sidereal Senior Member

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    Sounds very promising. I'm curious to see whether PEM can differentiate between ME/CFS and Lyme groups.
     
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  12. Valentijn

    Valentijn Senior Member

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    And with Walitt's statements implying that he's on a short leash regarding his psychosomatic bullshit. I'm still very worried about Hallett and his team members, however. But at least those three lost their functional movement disorder "control group".
     
    Last edited: Oct 9, 2016
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  13. Valentijn

    Valentijn Senior Member

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    I'm pretty sure it can, when properly defined, on account of Lyme patients (and specialists) frequently saying that we all need to exercise a bit :p
     
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  14. BurnA

    BurnA Senior Member

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    Hopefully these tests should differentiate

     
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  15. Gijs

    Gijs Senior Member

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    Very good to see this kind of research. I am sure something will show up.
     
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  16. BurnA

    BurnA Senior Member

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    Yes, I have the same impression.

    Odd that they didn't publicise the increase in patient no.s more, is there any official communication channel ?

    I wonder too their reasoning for keeping healthy control no.s the same as patients.
    Costs the same to test a healthy person as it does a ME patient. Ron Davis made the point at the iime research conference that you don't need to keep both no.s the same, depending on results. Maybe they are playing it safe, and I don't know the math behind it, but if anyone does i'd be interested.
     
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  17. Cheshire

    Cheshire Senior Member

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    They'll get good information...


    Edit: I am being sarcastic here.
    For those who don't know Edward Shorter, see his hatred piece on ME/CFS patients http://www.freezepage.com/1424484834CZFJDNHSFV (this version was deleted from Psychology Today to be replaced by a less heinous paper)
     
    Last edited: Nov 3, 2016
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  18. caledonia

    caledonia

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    You're being sarcastic, right? If you read the article at the tiny url link, this guy says ME is a "psychic epidemic".

    Can't wait til OMF blows the lid off this.
     
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  19. Denise

    Denise Senior Member

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    So the next person to present should be Mary Dimmock and/ or Matthew Lazell-Fairman on "30 Years of Disdain: How HHS and A Group of Psychiatrists Buried Mylagic Encephalomeylitis"! (The shorter document can be found at http://bit.ly/The_Burial_of_ME_Summary. The updated, longer document is available at http://bit.ly/The_Burial_of_ME_Background)
     

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