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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

Discussion in 'General ME/CFS News' started by Murph, Jan 31, 2017.

  1. Murph

    Murph :)

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    What I find interesting here is that his (bitter) experience in the world of medicine means he focuses a lot on the levers that make science work. He's obsessed with inventing low cost instrumentation, having good staffing, working at speed, efficient publication strategies and getting funding.

    You see most scientists obsessing on their pet hypothesis. In this video, he doesn't seem to be too fussy about his hypothesis. He's excited by putting the structures in place for success.

    You can donate here (and it is obvious from the video they work hard to make the money go a long way!)
     
    Last edited: Feb 4, 2017
  2. AndyPR

    AndyPR Senior Member

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  3. Daffodil

    Daffodil Senior Member

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    higher family adversity = higher risk for CFS

    could stress hormones be affecting gut flora?
     
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Love that man
     
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  5. medfeb

    medfeb Senior Member

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    I'm not so sure about that. To my knowledge, the studies that are reporting that family adversity is a risk factor for CFS are using awful case selection methods that encompass patients with psychiatric illness and other causes of fatigue. Not good evidence for ME.

    One of those studies was by the CDC which claimed childhood adversity as a risk factor. The IOM dismissed this study because it included a "biased sample with overrepresentation of individuals with depression and posttraumatic stress disorder (PTSD)."
     
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  6. *GG*

    *GG* Senior Member

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    Read someplace that perhaps 20 Million sufferers worldwide. But he says 2 to 3 Million sufferers in the USA, so if we are getting bumped up by a magnitude of 2 to 3? Would seem the worldwide number is probably 40 Million!

    Also, for those of us in the USA and beyond, that think we should get lots more money for research (seen numbers from about 100 Million to 250), seems that these numbers would give us a better leg to stand on, so to speak. And Perhaps 200 Million a year is not so far fetched in the near future?

    Not sure how many good studies we have ready to go, so I am not for wasting money on research that does not advance the ball, and might go to psychobabblers!

    GG

    Edit: Interesting thread and Video here: http://forums.phoenixrising.me/inde...-jasons-talk-on-myths-about-me-and-cfs.49033/
     
    Last edited: Jan 31, 2017
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  7. wastwater

    wastwater Senior Member

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    Autisms are also on the rise they say it's 1 in 68 now,good video clip.
     
  8. Ben H

    Ben H OMF Correspondent

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  9. KristenSF

    KristenSF

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    I am so deeply grateful that this brilliant man is working so hard to help us.
     
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  10. Ben H

    Ben H OMF Correspondent

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    Exactly @Murph

    Thats what makes Prof Davis such a special man, among other things!

    The focus on technology is astounding, and its a very organic way of looking for the cause of the illness and following the clues. Like you say-no pet hypothesis to get in the way.

    There will be a live webinar with Prof Davis soon too!


    And as always, if you can donate to fund this extraordinary research, here is a donation link:

    http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

    Thanks guys,


    B
     
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  11. Tuha

    Tuha Senior Member

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    What will be the webinar about?

    It´s just really pity that these kind of researchers dont have more money from governement. We have to go through this periode of ignorance and to try to fund this research privatly. I am supporting Davis and Lipkins research and I will send them this month some money again. We have to encourage other patients to join this effort of private donations. There is no other way. The RAFs which were announced are a good start but far away from what these researchers need.
     
  12. Valentijn

    Valentijn Senior Member

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    Yes, the ones finding such an association are also retrospective, which is a huge problem, especially when done with any ill population. Prospective studies show no link between childhood adversity and ME.
     
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  13. Sasha

    Sasha Fine, thank you

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    Thanks for posting, @Murph! Would you like to put the donation link for OMF in your original post?
     
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  14. Ritto

    Ritto

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    Donated, with love.
     
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  15. slysaint

    slysaint Senior Member

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    https://pediatrics.aappublications.org/content/130/1/e71.long?trendmd-shared=0


    basically a lifelong study on fatigue; children
    "14 000 expectant mothers were recruited into the study, and the children have been followed up regularly since birth with postal questionnaires for both children and their parents, clinical assessments, and the collection of biological samples"

    "When the study children were aged 13 years, their mothers or main carers were sent a questionnaire that included questions on whether their teenager had been feeling tired or lacking in energy over the last month (yes, no); how long the tiredness had lasted (<3 months, 3 to 5 months, 6 months to 5 years, ≥5 years); how many days their teenager had missed school because of tiredness; and whether the tiredness/lack of energy had stopped the teenager taking part in hobbies, sport, or leisure activities (not at all; only a little; quite a lot; a great deal). The questionnaires asked whether the teenager snored (never, sometimes, often); whether the mother thought the fatigue was due to the teenager playing too much sport; and whether the teenager took regular medication"

    "Of the 5657 13 year olds with sufficient information to define chronic disabling fatigue, 1995 were tired or lacking in energy in the last month. Of these, the following did not have chronic disabling fatigue: 1284 who were tired for <3 months; 516 who had fatigue but were not disabled by it; 18 whose mothers thought they were fatigued due to playing too much sport; 27 who snored frequently (to exclude sleep apnea); and 33 who had probable depression. There were no teenagers on medication for long-term illnesses that could have caused the fatigue. There were 296 children with missing data on snoring, and it was assumed they did not snore frequently."

    "Of 117 13 year olds with chronic disabling fatigue of at least 3 months’ duration, 53 (45.30%) had been affected for more than 6 months and 7 for more than 5 years."

    "The main limitation of this study is that definitions of chronic disabling fatigue were based on parental reports of symptoms. The CDC8 criteria require that 4 of 8 additional symptoms are present, whereas the NICE9 criteria require 1 additional symptom. Each set of criteria require physician diagnosis to exclude other conditions that cause fatigue."
    "To our knowledge, this is the first study to reveal an association of early life family adversity with chronic disabling fatigue in teenagers. Our results are consistent with studies in adults, which describe an inverse association between CFS/ME and socioeconomic status"

    Think the one on 16 year olds was a follow up from this one.

    IMO The most likely candidates for ME are the 7 that were ill for more than 5 years and possibly some of the 53 affected for more than 6 months but without any other criteria it's all largely supposition/guesswork.

    Shows (again) how this approach is wrong if the study purports to be one on ME or CFS (MEGA) rather than 'chronic disabling fatigue'.

    (posted on the opposing mega thread).
    My heart sank when he mentioned this study.
     
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  16. Ben H

    Ben H OMF Correspondent

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    AFAIK, webinar will be an update on OMF/ Prof Davis's research and additional questions. I will create a thread for it when its on :)

    Thanks so much @Ritto for your continued support as always!

    Hey @slysaint

    I understand the concern. As you know Prof Davis is about as polar opposite to Crawley as you can get, so please do not look too deeply into this. I think his point was that the illness is remarkably common, compared to the lack of funding. Even if that figure is lower than Crawley cites because of her cohort selection and other issues-he just happened to cite that study.


    B
     
    Last edited: Feb 1, 2017
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  17. AndyPR

    AndyPR Senior Member

    Exactly @slysaint . Disappointed that he is giving credibility to this 'study' but given his workload hopefully it's just misjudgement or he took somebodyelses word for how valid the study is.
     
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  18. medfeb

    medfeb Senior Member

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  19. Ben H

    Ben H OMF Correspondent

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    With how much literature Prof Davis has read, im not suprised- and I will pass it on for sure-but Prof Davis is ofcourse already aware of Crawleys research and certainly does not agree with or take that approach! The point was simply about prevalence and funding.

    But lets not get sidetracked (though the concern is valid, and im not sweeping things under the rug)-there is a huge amount in the video to be positive about.


    B
     
    Last edited: Feb 1, 2017
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  20. Solstice

    Solstice Senior Member

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    Well, we have to be careful to stay accurate. But there is lot's of good stuff in this video, i'm impressed with the tenacity and inventivity of the work.
     

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