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CMRC conference 2016 AfME report on presentations

Discussion in 'General ME/CFS Discussion' started by slysaint, Dec 22, 2016.

  1. slysaint

    slysaint Senior Member

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    https://www.actionforme.org.uk/uploads/pdfs/cmrc-conference-2016-selected-presentations.pdf

    "
    Prof Holgate then laid out how MEGA would proceed.
    “Starting with genomics and DNA
    sequencing but then spreading all the way through the cellular processes, through
    transcriptomics, proteomics, metabolomics and even
    microbiomics and serumomics, we’ll be
    looking to pull this all together and come up with
    some pathways.”
    There was one important element he was keen to stress. “We can have all the -omics in the
    world but unless we get the patients and the phenotyping right then it’s all a waste of time"

    o_O

    After thanking the conference organisers and delegates, Prof Holgate expressed the deep need
    for continued commitment to and enthusiasm for this project from scientists, patients and the
    CFS/ME community.

    :lol:
     
    Last edited: Dec 22, 2016
  2. Demepivo

    Demepivo Dolores Abernathy

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    In a reply to a recent letter on MEGA, Prof Holgate said he wasn't an expert on ME/CFS....(but knows some stuff on asthma)

    He has been on MRC committees for 10 years. What has he been doing?
     
  3. Esther12

    Esther12 Senior Member

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    Trusting Wessely and Crawley?
     
  4. Demepivo

    Demepivo Dolores Abernathy

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    PS Did Stephen say yet again, "Esther Crawley is a wonderful researcher..."
     
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  5. A.B.

    A.B. Senior Member

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    Are these the studies that were funded by the CMRC?

    Biological Fingerprints of Fatigue in Primary Sjögren’s Syndrome
    Fatigue in Primary Sjögrens Syndrome is associated with lower levels of pro-inflammatory cytokines

    I heard something along the lines of money intended for ME/CFS being spent on Sjögren's and some other autoimmune disease.
     
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  6. medfeb

    medfeb Senior Member

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    So let's use the NICE criteria to select patients with ME?
     
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  7. Demepivo

    Demepivo Dolores Abernathy

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    Yes, dear old Stephen seems to be getting more confused by the day.

    Maybe darling daughter Esther's instructions are not very clear.
     
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  8. Countrygirl

    Countrygirl Senior Member

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    UK
    :rolleyes::rofl::lol::lol::lol::lol::lol::lol::D
     
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  9. AndyPR

    AndyPR Senior Member

    Above is from table of contents - PDF available here https://www.actionforme.org.uk/uploads/pdfs/CMRC-conference-report-2016.pdf
     
    Last edited by a moderator: Feb 27, 2017
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  10. AndyPR

    AndyPR Senior Member

    Well, I can't fault his reasoning here, as far as we can tell at this point, MEGA is a waste of time.

    Lol, the guy is so two-faced it's unbelievable. What he basically means is that the patients should just agree with him, because he thinks he's right.
     
  11. A.B.

    A.B. Senior Member

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    Invest in ME offers a more interesting program.

    This seems barely even relevant to ME/CFS. There must be hundreds of diseases with fatigue as important symptom.

    There's some info on this here http://gtr.rcuk.ac.uk/projects?ref=MR/J002739/1

    They're going to study people with hepatitis C infection being given interferon alpha. These people often have intense fatigue lasting up to a year after treatment.

    The problem here is that ME/CFS might not be the same as self limiting post-infectious fatigue. In mono, it's said that about 10% of patients will go on to develop ME/CFS, but most will have some sort of post-infectious fatigue. Their sample size isn't large enough to provide insights the presumably small proportion of patients that will go on to actually develop ME/CFS. Moreover, they will assess patients at six months after treatment which is the minimum to even qualify for a CFS diagnosis in most countries. The Lipkin finding of a cytokine profile changing over time is not acknowledged either. It seems unlikely this study will yield any useful information.

    Note to UK researchers: ME/CFS is a complex systemic disease, not "persistent fatigue".
     
    Last edited: Feb 27, 2017
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  12. Cinders66

    Cinders66 Senior Member

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    I've pointed out to AFME that they missed out Dr Nahles spin slide 4 on CBT & GET, although they quoted him earlier (in this report) about the USA addendum on it.

    Also they say the 2012 funds was due to a highlight notice when it was a guaranteed funding call for applications which is a more effective means of stimulating research but MRC refuse to do again with CFS

    I don't think this CMRC conference reflects the urgency CFS research deserves , I didn't regard this conference much and I dont think uk science is advancing the field much
     

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