When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
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UK Research Collaborative Conference in Newcastle: 13th - 14th October

Discussion in 'Upcoming ME/CFS Events' started by charles shepherd, Mar 26, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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  2. charles shepherd

    charles shepherd Senior Member

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    The slate of speakers is still being finalised but there will be two plenary sessions on neuropathology led by Hugh Perry, Professor of Experimental Neuropathology for Biological Sciences at the University of Southampton, and a session on clinical trials led by Dr Øystein Fluge, who is investigating the use of Rituximab in people with ME/CFS at Bergen University, Norway.

    Other listed session chairs include Professor Jim Horne, Professor George Davey-Smith and Professor Jo Nijs.

    The collaborative’s founder-chairman, Professor Stephen Holgate, will be much in evidence and will summarise the event at its end.
     
    MeSci, aimossy, Bob and 5 others like this.
  3. charles shepherd

    charles shepherd Senior Member

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    Professor Jose Montoya from Stanford, USA, has accepted our invitation to participate as a Keynote Speaker in the opening Plenary Session covering the neuropathology of ME/CFS, which will be chaired by Professor Hugh Perry

    Other speakers will be announced in due course

    Tuesday 13 October


    9:30 -10:30

    Registration

    10:30 – 12:30

    Plenary Session 1: Neuropathology

    Chair: Prof Hugh Perry

    Keynote Presentation:

    Prof José Montoya10-30 – 11:30

    Speaker TBC11.30 – 11.45

    Speaker TBC11.45 – 12.00

    Q&A12.00 – 12.30


    Professor Jose Montoya:

    https://med.stanford.edu/profiles/jose-montoya

    Stanford research on neuropatholgy of ME/CFS:

    http://med.stanford.edu/news/all-ne...bnormalities-in-chronic-fatigue-patients.html

    Professor Hugh Perry:

    http://www.southampton.ac.uk/biosci/about/staff/vhp.page
     
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  4. Scarecrow

    Scarecrow Revolting Peasant

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    http://www.eventzilla.net/web/event?eventid=2139069963
    The associate members' session includes a joint workshop with researchers on patient reported outcome measures.
     
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  5. aimossy

    aimossy Senior Member

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    I have my fingers crossed hoping Julia Newton may attend and speak at the conference this year.
     
  6. Scarecrow

    Scarecrow Revolting Peasant

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    The date for Associate Member registration has been put back by a month:
     
  7. Esther12

    Esther12 Senior Member

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    It's Deary's area too, although he doesn't seem to be involved in much research anymore. His guides for treating patients are pretty vile.

    No more details seem to have been filled in on who will be there.

    Esather Crawley is the chair of the session on clinical trials... lets hope someone pushes her on the shit design of SMILE and her claim that PACE showed CBT/GET led to a recovery rate of 30-40%.
     
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  8. user9876

    user9876 Senior Member

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    I think the key thing to push on clinical trial design is the problems with subjective measures when treatments such as CBT or the lightening process are designed to change perception of symptoms.
     
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  9. Sasha

    Sasha Fine, thank you

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  10. Scarecrow

    Scarecrow Revolting Peasant

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    @Sasha. Registration for researchers and students has been open for months.

    Still not open for patients. Waiting. Waiting.
     
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  11. Sasha

    Sasha Fine, thank you

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    Oops! Sorry.
     
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  12. Sasha

    Sasha Fine, thank you

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    I posted this in the wrong place earlier so here it is again:

    Just read this on the MEA's site - look, there'll be livestreaming!!!

    Not quite sure of what. Is it the whole conference, @@charles shepherd?

    http://www.meassociation.org.uk/201...newcastle-cmrc-conference-13-14-october-2015/

    ...and @Simon made an interesting response:

    http://forums.phoenixrising.me/inde...wcastle-13-14-october-2015.38283/#post-610284

    Apologies for confusion over starting another thread on this (which is now closed).
     
  13. Bob

    Bob

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    England (south coast)
    via email...

    @Scarecrow
     
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  14. Simon

    Simon

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    Repeated here:

    Delighted to see Rituximab featuring at the CMRC conference, and even more pleased to see George Davey Smith is coming to the party. He's a really interesting thinker, and just the kind of scientist we need to bolster the field in the UK - a highly respected researcher.

    Profile: George Davey Smith - insight (MRC)
    Plus more serious stuff, Professor George Davey Smith - School of Social and Community Medicine (Bristol University)

    He's probably best-known for his work on "How our genes conduct radomised trials "



    He co-authored and interesting 2007 article with Esther Crawley: Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter? which I thought showed unusual clarity in this field, and even discussed problems of lack of correction when making many comparisions, a real problem with mecfs genetics studies.

    @Bob replied:
    The best study quoted in that review was: A twin study of chronic fatigue.
    A lot of twin studies use fairly-broadly defined chronic fatiuge, this study did a better job of diagnosis than most (though not perfect).

    They used three definitions, and found that as they tightened the definition fromo chronic fatigue, to chronic fatigue with medical exlusions, then to chronic fatigue with medical AND psychiatric exclusions, the genetic component increased from 19% to 51%.
     
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  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Ooo hope there's still places available. I usually go to newcastle ones.
     
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  16. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    IImagine a true ME collaborative in the UK, out of the hands of the BPS lobby and the selective grant money of the MRC:

    Experts such as:

    Kogelnik, Peterson,Cheney, Bell, Fluge/Mella, Montoya, De Meirleir, and new researchers. Imagine a time in science where no disease denial experts are in sight, academically sheltered under the wing of the UK's MRC or the frankly ludicrous USA IOM's: SEID = theoretical fatigue, not demostrated inflammation.

    Immunuologists, Cardiologists, Neurologists, Rheumatologists could and should all come together researching genuine organically sick patients (using screening tests to demonstrate they are ill), and then BPS 'theory' of CFS can be shunned once and for all left for the minds of the hysterical to lap up.

    That would be a true ME collaborative not one just in name easy to spin to the numbed general public who think 'ME research' equates to the promotion of a questionnaire results (market research), because you become an 'ME' researching by using the word ME, when the actual 'research', never ones analyzes patients with science of demonstrated organic disease. (F48.0 and Fukuda CFS criteria is clearly beneficial for CFS = ME).

    Perhaps in 2018, we can learn that a 'subset' of CFS (genuine ME) have an autoimmune illness and simultaneously that talking therapy 'helps fatigue' (Not genuine ME). Ohh the irony it only took 40 years to start the first stages in ending political interference in non HIV AIDS promoted as 'fatigue' syndromes.
     
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  17. Dolphin

    Dolphin Senior Member

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    George Davey Smith gave a talk at a meeting of biopsychosocialists, but it looks like what he said wasn't popular with some/many/most there.

    Sample summary: http://www.meactionuk.org.uk/PROOF_POSITIVE.htm

    Maxhead (presumably the same @Maxhead that's on Twitter) posted the full chapter of Davey Smith's talk online:
    http://issuu.com/maxhead/docs/bps_caution_davey_smith
     
    harveythecat, alkt, MeSci and 10 others like this.
  18. aimossy

    aimossy Senior Member

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    woah! Genius in our midst! Nailing the whole " association is not causation"!
    This is a bit exciting.
     
    Last edited: Jun 24, 2015
    alkt, Simon, Bob and 4 others like this.
  19. msf

    msf Senior Member

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    'Nevertheless, and perhaps unsurprisingly, Professor Sir Michael Marmot sprang to support Wessely'

    Are they sure it wasn't Sir Michael Weasel?
     
  20. Dolphin

    Dolphin Senior Member

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