Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

Discussion in 'Phoenix Rising Articles' started by Simon, Feb 26, 2016.

  1. NelliePledge

    NelliePledge plodder

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    he said he didn't have any background in ME so why should he be bothered either way whether PACE stands or falls. He should be concentrating on biological research not getting involved in controversy about psychological stuff which has no bearing on his work. We've been told MEGA is all about biological

    Has he been inducted into The BPS Sect.
     
    Last edited: Jun 28, 2017
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  2. JaimeS

    JaimeS Senior Member

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    Except that, because of who was in charge, people were against MEGA; and that has to do with distrust of the BPS school of clinicians and researchers. So it has directly affected his work. Moreover, although I don't personally feel this way, I'm sure that there were those who painted him with the same brush when he stood next to Crawley et al. Because of the distrust of the BPS school by patients, it's prevented his research from moving forward. Sounds like he's chosen to blame the patients instead of those who performed the crappy research in the first place.

    This whole time I've been wondering about the politics at play here. It may be that he really couldn't get funding without the BPS school's blessing, or that there were a lot of strings attached to this funding in other ways. Though perhaps because of his location, and because in the UK it's all you hear, he genuinely thought he was examining the genetics of a psychiatric condition.
     
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  3. JaimeS

    JaimeS Senior Member

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    Sometimes I think that's the real problem here, with the research and the way it's conducted, and I've said as much before: if you're working with a severe mental illness, a recovery rate of 20% would be just stunning in its effectiveness. Measuring the illness totally differently study-to-study and claiming you're studying the same thing would be legit, because it's all about behavior, isn't it? Mental illness is what the therapist says it is, and is almost always based entirely on subjective assessment and the clinician's authority.

    I think that's why they're so startled at the reception they've gotten, and how they're able to still paint themselves as the victims of a crazed cult of biomedical research scientists: PACE might be the way that psychiatric research usually looks, while biomedical research demands a great deal more objectivity and repeatability by other scientists.

    When we say 'research', what we mean is something very different from what they mean when they say 'research'.
     
  4. Esther12

    Esther12 Senior Member

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    Crawley said that Davey-Smith had played a role in her research from the start. It's not that he was forced to fit in with Crawley: we've got him to thank for her.
     
  5. JaimeS

    JaimeS Senior Member

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    :(:(:(:(:(

    And, as JE asserted, before that she studied actual medicine.
     
  6. msf

    msf Senior Member

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    If criticism of PACE was why he resigned, then he really is a dope. Just going on first impressions, I would put his ego up there with anyone in the whole ME field, and, unlike Lipkin, I didn´t really see how he was going to help us anytime soon.
     
  7. Luther Blissett

    Luther Blissett Senior Member

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    Very good points, and I would just add that that if a patient challenges the subjectiveness of the therapist diagnosis, this is pointed to as proof of just how ill they are. The chances for an inpatient falsely labelled with 'disease' challenging this diagnosis is tiny. They are accused of 'Lack of insight' into their own behaviour. Only by falsely going along with the 'diagnosis' do they have a chance of escape.

    This interview (https://www.psychologytoday.com/blo...became-black-disease-interview-jonathan-metzl) about the book The Protest Psychosis: How Schizophrenia Became a Black Disease, was very enlightening to me.
     
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  8. msf

    msf Senior Member

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    I´m not sure about other countries, but it seems to me that the nature of healthcare in the UK (mainly public) lends itself to a rather incestuous relationship between medical types here. I remember a thread where Prof. Edwards didn´t call Crawley a dope because (I imagine) of some sort of collegial feeling.
     
    Last edited: Jun 30, 2017
  9. BurnA

    BurnA Senior Member

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    I think Prof Edwards made it very clear what he thinks about Crawley's work.

    http://forums.phoenixrising.me/inde...-controversial-field.49246/page-2#post-812388
     
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  10. msf

    msf Senior Member

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    The thread I was referring to was from a couple of years ago, but his comments suggest, Prof. Edwards might have known her from her immunology (I thought it was only for smart people, or is she ammoral rather than dumb?), whereas I and others on PR knew her from her CFS nonsense, which I am glad to see Prof. Edwards now recognises as nonsense.
     
  11. slysaint

    slysaint Senior Member

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    from 2008
    https://www.researchgate.net/public...able_in_children_and_if_so_why_does_it_matter
    bit difficult to read
    this one's better:
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2066085/

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

    "
    Is the heritability of fatigue due to depression?
    The fatigue being measured might actually be part of a mood disorder such as depression, also known to be heritable."

    :depressed:
     
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I find this reasonably insulting msf. Can you quote the post? My memory is that I mentioned that Dr Crawley was a trainee of mine. She did some very reasonable immunology for her doctorate. Has anyone seriously suggested that she is dumb? How did she get where she is if so?

    If people with ME want to break through the 'collegiate' system in the UK it is not terribly clever to make innuendos about the one person who is trying to help. Is my J Health Psychology paper 'collegiate'? Did I spend many hours this week writing a critical referee's report on a review of exercise therapy because I felt a 'collegiate' feeling to the people whose work I was dismissing?

    One of the most important points that needs to be got across is that the suggestion that comments from PWME are ill thought through and abusive is nonsense. I have myself said so many times in public. But sometimes comments do seem to be pretty ill thought through. Why give ammunition to the people who you are criticising?
     
  13. Barry53

    Barry53 Senior Member

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    Rigorous objectivity is essential not just for good science per se, but especially important in any critiques of bad science and those who engage in it. I think @Jonathan Edwards gets that absolutely right. I really don't see where you are coming from on this.
     
  14. msf

    msf Senior Member

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    Sorry, I should have put an ´even´ before your name, to show that in my opinion, even those in the UK on the right side of the debate, such as yourself and Julia Newton, seem (again in my opinion) to have to give too much credence to the those whose views are dumb, even if they themselves are not (and if not, I would say they are amoral). Also, if I was wrong in supposing (note my use of the word ´imagine´) that some sort of collegial feeling might affect your stance re Crawley, then I apologise for any insult.

    With regards to giving people ammunition, that really doesn´t seem to me like something that should affect how a world-class health system works. As an English teacher, I never used anything the students said about me as justification for doing my job differently.
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Why do you say I have to giving credence to Crawley or White? I cannot really make out what you are on about to be honest. I make my opinions very plain and do not compromise.

    The point about giving ammunition has pretty little to do with the healthcare system. It has to do with getting a message across to the wide range of people, medical and non medical, who are happy to be told that people with ME are nuts and bolshy. I am sure Mr Trump thinks that and maybe all who voted for him. As far as I know the view occurs across the globe. If PWME are prepared to make snide comments even about those who doing their best to help them overcome the prejudice it does not help much.
     
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  16. msf

    msf Senior Member

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    Well, if it has affected your motivation to help people with ME, then I am truly sorry, as I really believe you are doing your best to help those with ME. If it puts off anyone else who is sincerely trying to understand ME then I am sorry for that too; if, however, comments like mine put off people like Crawley from working in the ME field, then I can´t say I am unhappy about that.
     
    Last edited: Jul 21, 2017
  17. msf

    msf Senior Member

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    In the end though, I don´t think it will come down to a PR war, but rather the science that is being done in the USA, Belgium and Norway.
     
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  18. msf

    msf Senior Member

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    Also maybe Germany and Australia.
     
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