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Updates from the UK ME/CFS Biobank

Discussion in 'BioMedical ME/CFS News' started by Andy, Feb 14, 2018.

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  1. Andy

    Andy Committee Member

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  2. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Our very own vampire!

    Nurse Caroline Kingdon :hug:
     
  3. Trish

    Trish Moderator Staff Member

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    From Facebook:
     
  4. Daisy

    Daisy Established Member (Voting Rights)

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    I participated in the original study but unfortunately cannot continue to do so as I now take fludrocortisone for my blood pressure. Caroline also took samples from my husband as a healthy control. So even though we are in the depths of Suffolk we were two for the price of one

    I am however sending in monthly samples of urine and saliva for the second study. This study also includes extra sample packs for participants to send in samples when they are in a flare.

    The biobank team are great, very professional and supportive of the participants.
     
  5. Cheshire

    Cheshire Senior Member (Voting Rights)

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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "
    Research Assistant or Research Fellow in Epidemiology/Clinical Research
    London School of Hygiene & Tropical Medicine - Disability and Eye Health Group
    Location: London
    Salary: £33,567 to £43,759 per annum, inclusive
    Hours: Full Time
    Contract Type: Fixed-Term/Contract
    Placed on: 7th March 2018
    Closes: 27th March 2018
    Job Ref: ITD-CRD-2018-05
    Applications are invited for a Research Fellow or Research Assistant to join the CureME Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research team in the Disability and Eye Health Group at the London School of Hygiene & Tropical Medicine (LSHTM).

    The role presents an exciting opportunity to join a dynamic team working on ME/CFS biomedical research, which includes the UK ME/CFS Biobank, the first of its kind in the UK. The UK ME/CFS Biobank is managed at LSHTM and the samples are processed and stored at the University College London/Royal Free Hospital Biobank. For more information on the work of CureME, please visit http://cureme.lshtm.ac.uk/."
     
  7. MeSci

    MeSci Senior Member (Voting Rights)

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    ladycatlover, Allele, MEMarge and 6 others like this.
  8. Cheshire

    Cheshire Senior Member (Voting Rights)

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  9. Andy

    Andy Committee Member

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    Not knowing how many might be expected to apply I asked the question and got this reply from Jack.
    So looks very positive.
     
  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    U.K. Researchers scared off working on ME by those militant patients #not
     
  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    From Facebook

     
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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    I always feel nervous about things like this, in case it's some SMC-style propaganda piece.
     
  13. Trish

    Trish Moderator Staff Member

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    I have a lot of confidence in the UK Biobank ME experts - they really do get it with ME - I can't imagine them being a party to anything like an SMC propaganda piece - I hope you're wrong, @Esther12.
     
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    You can never control journalists themselves but I don't think this has anything to do with SMC. The input is from Biobank people and others very aware of the SMC problem. (I know little about it myself but know who is involved.)
     
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  15. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    Dr Shepherd is being interviewed for the documentary tomorrow. I've seen nothing that is of concern. The producers came through us to recruit case studies - young people with M.E. - last month.
     
  16. Andy

    Andy Committee Member

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  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    There was a short piece earlier in the week about the BBC filming at Merryn's family home (sorry but I have forgotten her surname) for a programme on severe ME to be screened in May in ME awareness week.

    Are there two programmes on ME to be going out soon?
    @Russell Fleming
     
  18. MeSci

    MeSci Senior Member (Voting Rights)

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  19. Londinium

    Londinium Senior Member (Voting Rights)

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    Per RTs by the MEA, it looks like the documentary that filmed at the Biobank will be called 'M.E. and Me' and is produced by Radio 1 Newsbeat. They often feature Newsbeat items on the front page of BBC News Online, so fingers crossed...
     
  20. Andy

    Andy Committee Member

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