The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Investigating the Investigators of the Upcoming Post-Infectious NIH Study

Discussion in 'Active Clinical Studies' started by Valentijn, Feb 23, 2016.

  1. geraldt52

    geraldt52 Senior Member

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    Not being able to do this sort of thing myself anymore, I want to say that I really appreciate all the work that is being put into it. There is no doubt that it is a lot of time consuming work. I think it's really important to establish "who's who" within the NIH program. If stones aren't cast indiscriminately, it'll be much harder to ignore the objections to particular individuals when they are presented.
     
  2. Liz_999

    Liz_999

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    Eugene O. Major, Ph.D.

    [​IMG]

    Laboratory of Molecular Medicine and Neuroscience (LMMN)
    Division of Neuroimmunology & Neurovirology,
    NINDS

    The NIH website lists him as a Consultant for the Laboratory of Molecular Medicine and Neuroscience, with Avindra Nath as the Acting Chief. He calls himself a Senior Advisor to NINDS in this interview.

    List of publications: http://www.ncbi.nlm.nih.gov/pubmed/?term=Major EO[Author]

    He has published a lot together with Avindra Nath more recently at the NIH and also when they were both working at Johns Hopkins University.

    At the beginning of his career he focused on viruses that can cause cancer. The Infectious Diseases Branch at NINDS then recruited him 30 years ago to research progressive multifocal leukoencephalopathy (PML) which is caused by the JC virus and, although rare, can develop in immuno-suppressed people, such as HIV patients and patients with autoimmune illnesses who receive monoclonal antibody therapies. He's been with NINDS ever since and now works on viruses that affect the nervous system. More recently, he has developed a test for the JC virus.

    No red flags. Another pass.
     
  3. Ecoclimber

    Ecoclimber Senior Member

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    @Valentijn
    I noticed on JB blog a tweet by Coyne
    Excited by the brilland George Davey-Smith entering epigenetics of ME/CFS research. He was upset by a tweet by Rosie Cox concerning the criteria preferred by the UKRC.

    In my opinion things went downhill from 24th when he became upset on the ME/CFS community response to Cort's article on Wallit & epigenetics and especially JB analysis of Walitt on her blog. He hurled abuse at those who criticize either the article or Wallit.

    I don't know any of the UK researcher(s) in question nor the UKRC critieria. Epigenetics is a new frontier of science, the foundation which is not clearly established, nor fMRI research analysis, microbiomem etc.

    Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter?
    Ester Crawley/George Davey Smith

    G = E: What GWAS Can Tell Us about the Environment

    Why is George Davey-Smith entering epigenetics of ME/CFS research at this moment in time and is there some connection between him and other UK researchers and Walitt? As his tweet on undermining his efforts at NIH, makes no sense.

    Perhaps it is something you or others in the UK could research?
     
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  4. Old Bones

    Old Bones Senior Member

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  5. Valentijn

    Valentijn Senior Member

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    Dr Silvina Horovitz is part of Mark Hallett's team. As the neuroimaging specialist on the team, she's probably summarily involved in most or all of their studies involving neuroimaging. Her work involves a variety of different neurological disorders.

    As such, she has published a lot with Hallett. Some of the research into dystonias (which they acknowledge as involuntary movements) isn't too bad, though they do seem rather adamant that the cause must be in the brain, not in the chemistry involved. One study was aimed at debunking GABA as being involved, based on results from earlier studies, but instead of just looking at GABA, they added 19 other metabolites to the list, pretty well killing any chance of stastical significance. Even with that, there was an almost-significant trend with a p-value of 0.059 for GABA in the basal ganglia.
    http://onlinelibrary.wiley.com.sci-hub.cc/doi/10.1002/mds.23306/full

    Dr Horovitz only co-authored one Functional Movement Disorder (psychosomatic) piece with Hallett and Maurer, and doesn't seem to be involved in any others. That one is only available in the form of a poster abstract ... no sign of a full paper anywhere.
    The patients were also described as having "clinically definite FMD", and the conclusion seems like neurobabble:
    http://www.neurology.org/content/84/14_Supplement/P6.080

    It's quite possible that she's not responsible for the spin or psycho/neurobabble in those articles. However she has been directly associated with it, with her name as an author of those papers. It's also worrisome that her boss is blatantly in favor of spin and psycho/neurobabble for some disorders, and that might influence her behavior in the current study.
     
  6. Valentijn

    Valentijn Senior Member

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    I also don't know enough about her to summarize anything.
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thank you to those here that took the time to look up this info on the NIH team. Much appreciated.
    Valentijn, Liz_99 and LiveAgain.
    I have to say (mostly from recollection now of previous pages) that the group looks mostly pretty good--with a few shocking exceptions.
     
  8. Forbin

    Forbin Senior Member

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    An interesting tidbit about Fred Gill is that he is mentioned in Laura Hillenbrand's award winning essay about ME/CFS, "A Sudden Illness."

    Around 1995 Hillenbrand saw him on the recommendation of a friend, and though Dr. Gill said he couldn't cure her, he did manage her case for some years.

    In the 2011 video Demystifying Medicine - Chronic Fatigue Syndrome: Is There A Virus?, Gill may be referencing Hillenbrand at 39:35 when he says, "...and these are just some of the symptoms. I look at this and I'd add more. I know people with vertigo who have chronic fatigue syndrome."

    http://videocast.nih.gov/Summary.asp?File=16477&bhcp=1

    From what I've read, Laura Hillenbrand has described vertigo as one of her most debilitating symptoms.

    [I pick up on mentions of vertigo because, when it was at it was at its worst, vertigo was my most incapacitating M.E. symptom.]
     
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  9. Sasha

    Sasha Fine, thank you

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    UK
    George Davey Smith isn't on the NIH study and so is outside the scope of this thread. However, he seems to be a very positive asset.

    He has criticised the biopsychosocial model, apparently to the discomfiture of Simon Wessely:

    http://forums.phoenixrising.me/inde...eorge-davey-smith-summary-with-comments.1805/

    He's an expert in epigenetics and a huge win for PWME. He has been getting publicly involved since last November (he spoke at the UK CMRC conference in Newcastle and presumably was invited quite some time before that, so his interest must have started at least last summer). I imagine that he has started to get involved through being courted by our own biomedical researchers. He's solidly biomedical and I would expect him to be a powerful and valuable ally. I believe he could make a huge and positive difference to our progress.

    Anyway, back to the NIH study...
     
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  10. worldbackwards

    worldbackwards A unique snowflake

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    Dragging thread off-topic again for just one more post, are we a bit worried by his proximity to Esther Crawley?
     
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  11. Sasha

    Sasha Fine, thank you

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    I think it's more likely that the BPS school should be worried by Esther Crawley's proximity to him. She's junior to him (a reader, which is one below a professor) and way below him in terms of scientific credentials. He's about as far from stupid as it's possible to get, and he knows bad science when he sees it.

    Of all the things I'd worry about in the UK situation, this isn't one of them. I think interesting things may happen as GDS starts to scrutinise the situation.
     
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  12. Bob

    Bob

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    England (south coast)
    He has geographical proximity to Crawley but intellectual, scientific and ideological proximity is a different story. I don't think we need to worry; Smith is as fiercely independently-minded and data-driven as they come.
     
    Last edited: Mar 5, 2016
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  13. worldbackwards

    worldbackwards A unique snowflake

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    If you're all happy then I'm happy! :)
     
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