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United Kingdom: ME Research UK (MERUK) News

Discussion in 'General ME/CFS News' started by Andy, Feb 23, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    Not sure how long they've been doing this but the ME Association also seem to have had the same idea - https://www.s4me.info/threads/me-association-index-of-published-me-cfs-research.2493/
    http://www.meresearch.org.uk/information/research-database/
     
  2. Trish

    Trish Moderator Staff Member

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    Sounds like an excellent idea. What a pity the MEA and MERUK didn't work together on this. So much duplicated effort.
     
  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    MEMarge and Dolphin like this.
  4. Trish

    Trish Moderator Staff Member

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    As have the MEA in their weekly Friday updates of research published that week, which presumably can be accessed going back in time.

    Still, it's not a competition - they both look useful in different ways.
     
    MEMarge and arewenearlythereyet like this.
  5. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I've been using the MERGE one for many years
     
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  6. Trish

    Trish Moderator Staff Member

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    I just did a search for MERGE - it seems to be a former name of MERUK.
     
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  7. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Sorry I forgot that not every one would know this. I get stuck times.
     
    Last edited: Feb 23, 2018
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  8. Andy

    Andy Committee Member & Outreach

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    Download PDF here, http://www.meresearch.org.uk/wp-content/uploads/2018/05/BreakthroughSpring2018.pdf or read online here, http://issuu.com/meruk/docs/breakthroughspring2018

    Screenshot of the contents list
    Screen Shot 2018-05-14 at 11.10.29.png
     
    MEMarge, ahimsa, Sly Saint and 11 others like this.
  9. TiredSam

    TiredSam Moderator Staff Member

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    I wouldn't even wipe my dog's arse with page 4.
     
  10. strategist

    strategist Senior Member (Voting Rights)

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    Why is anyone surprised that the LP trial reported positive results? That is the expected result in an unblinded trial with subjective measures involving an intervention that consists of brainwashing to deny one's symptoms.
     
  11. Trish

    Trish Moderator Staff Member

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    I've just read the article about LP. I'm astonished that MERUK took the Crawley LP trial seriously enough to waste 2 pages of their newsletter on this junk - and even seemed to suggest Crawley's study had any credibility. MERUK have just gone down in my estimation. Take this, for example:

    Have they not read the PACE critiques pointing out that subjective measures are only OK in double blinded trials, not in open label trials, and especially not in ones where the 'treatment' involves brainwashing the kids to say they are better. :banghead:
     
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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    So much for leaving the CMRC.
    compare to the statement made by IiME:

    "We view this as a pyramid business – unregulated, unaccountable and unscientific.
    Claims that it cures people with ME we find as risible hype."

    "The LP business has no place in serious research and cannot be researched seriously,
    as it tells people to keep its methods secret, to deny they have ME."

    full statement here:http://www.investinme.org/IIMER-Statement-1709-01.shtml
     
  14. Gary Burgess

    Gary Burgess Established Member (Voting Rights)

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    Thanks for sharing this, @Andy. I’ve never seen this magazine before. Good to read one that focuses on research in an accessible and unemotional way.
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    MERUK has a new CEO:
    "
    ME Research UK Board of Charity Trustees is delighted to announce the appointment of Simon Phillips as Chief Executive Officer (CEO) of the charity.

    Simon comes to us with a wealth of charity sector experience that complements our existing team. We are all looking forward to working with him and the team to build on our position as the UK’s leading charity funding biomedical research into ME.

    Simon adds, “I am extremely proud to have been appointed to this position and I very much look forward to helping the organisation deliver its mission of energising ME research."

    http://www.meresearch.org.uk/news/new-ceo-simon-phillips/
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sad that I now have so little respect for the UK charity sector that this sounds bad to me: "Simon comes to us with a wealth of charity sector experience".
     
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Yep. Wish I could like that post more than once.
     
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  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I remember the job ad specified a salary of £35,000-£40,000 so at least a fairly low salary for a CEO.
     
  19. Andy

    Andy Committee Member & Outreach

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  20. Andy

    Andy Committee Member & Outreach

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    PDF version, http://www.meresearch.org.uk/wp-content/uploads/2019/05/BreakthroughSpring2019.pdf
    Online Issuu version, http://issuu.com/meruk/docs/breakthroughspring2019

    Contents
    • Editorial
    • AmazonSmile
    • Parliamentary debate
    • Spring Prize Draw
    • Treatment avenues
    • CMRC proposal
    • Autoantibodies
    • Our current projects
    • Reading difficulties
    • Severely ill patients
    • Research bites
    • Friends united
     

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