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United Kingdom: Action for ME (AfME) news

Discussion in 'News from organisations' started by Andy, Jan 7, 2021.

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  1. Andy

    Andy Committee Member

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    Last edited by a moderator: Jul 28, 2021
    Andy, Jan 7, 2021
    #1
    Sean, InfiniteRubix, MEMarge and 10 others like this.
  2. Andy

    Andy Committee Member

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    PhD Studentship application call

    The purpose of our PhD Studentships is to support the career development of scientists in the UK who are in the early stages of their research career and have the potential to become leaders in the field of M.E. research. The Studentship provides match-funding for up to three years totalling £45,000. We are already funding two PhD Studentships with Prof Chris Ponting and Prof Neil Harrison.

    Our 2021 application call was launched on Thursday 7 January, and the deadline for applications is noon on Monday 22 February.

    https://www.actionforme.org.uk/rese...al-research/research-we-fund/phd-studentship/

    Code:
    https://twitter.com/actionforme/status/1347200076247166976
    https://twitter.com/user/status/1347200076247166976


    Code:
    https://www.facebook.com/actionforme/photos/a.76870643208/10158932216393209/
     
    Andy, Jan 7, 2021
    #2
    Robert 1973, Simon M, Kirsten and 14 others like this.
  3. Andy

    Andy Committee Member

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    Code:
    https://twitter.com/actionforme/status/1347490747705151489
    https://twitter.com/user/status/1347490747705151489


    Paid and volunteer opportunities at AfME can be seen here, https://www.actionforme.org.uk/get-information/about-us/working-and-volunteering-for-us/ (same link as in tweet above).
     
    Andy, Jan 8, 2021
    #3
    Kitty, Invisible Woman, Peter Trewhitt and 2 others like this.
  4. Andy

    Andy Committee Member

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    Location:
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    Code:
    https://www.facebook.com/actionforme/posts/10159057840958209
    Code:
    https://twitter.com/actionforme/status/1364259774112665606
     
    Andy, Feb 23, 2021
    #4
    Kitty, Simon M, cfsandmore and 8 others like this.
  5. Hutan

    Hutan Moderator Staff Member

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    "Action for M.E. is pleased to announce its trans-Atlantic partnership with US charity Solve M.E., focused on enhancing the wellbeing of people with M.E., raising awareness, delivering policy changes, and increasing research on its causes and possible treatments."

    The partnership consists of three initiatives:
    • A two year postdoctoral fellowship designed to prepare postdoctoral researchers to excel in a career focusing on applying computational biology,
    • biostatistics, quantitative genetic, and data science to understanding the molecular basis of M.E. It includes one year being mentored by Prof Chris Ponting at the University of Edinburgh (also co-leading DecodeME) and a year mentored by Dr Liz Worthey at the University of Alabama.
    • Exploring how a digital platform like HealthTree can benefit people with M.E., connecting them with peer-support, shared experiences of symptom management, and research to which they can contribute. HealthTree has already started to do this successfully for people with myeloma.
    • Global advocacy in collaboration with the International Alliance for M.E., including plans for this year’s M.E. Awareness Month.

    more here:
    USA: Solve ME/CFS Initative
     
    Hutan, Mar 11, 2021
    #5
    cfsandmore, Snowdrop, rvallee and 9 others like this.
  6. Andy

    Andy Committee Member

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    Andy, Mar 11, 2021
    #6
    MEMarge, Legend, cfsandmore and 6 others like this.
  7. Andy

    Andy Committee Member

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    Andy, Mar 16, 2021
    #7
    MEMarge, Hutan, Invisible Woman and 2 others like this.
  8. Andy

    Andy Committee Member

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    Andy, Mar 25, 2021
    #8
    lunarainbows, Hutan, cfsandmore and 6 others like this.
  9. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I am particularly pleased to see the research officer post. Hopefully this will help with the overall understanding of the biomedical science in the charity.
     
    MEMarge, Mar 25, 2021
    #9
    Binkie4, lunarainbows, Hutan and 8 others like this.
  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    For children it may depend on who heads up that section. Was previously one of EC' s fans
     
    Amw66, Mar 25, 2021
    #10
    Forestvon, Invisible Woman, MEMarge and 1 other person like this.
  11. Simon M

    Simon M Senior Member (Voting Rights)

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    worth bearing in mind that Action for ME is a partner in the DecodeME study its chief executive, Sonya Chowdhury, is chair of the study's management committee and played a huge part in making the study come about, as well as in setting it up. I don't think there is any need to worry about a psychosocial focus.
     
    Simon M, Mar 25, 2021
    #11
    Binkie4, Ali, Jacob Richter and 10 others like this.
  12. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Super happy to see the advocacy officer posts :)
     
    lunarainbows, Mar 25, 2021
    #12
    Binkie4, Jacob Richter, Ariel and 7 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes I think this service is much needed i hope that means they are getting an additional person not just filling a vacancy
     
    NelliePledge, Mar 25, 2021
    #13
    Binkie4, Ariel, Missense and 7 others like this.
  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    Sonya has worked hard to turn things around, and is to be applauded. She brings experience to the table as her son has ME.

    The children's section was AYME , which merged with AfME. Its head was retained as head of children's section and was a major supporter for EC' s research, including FITNET. I sincerely hope there has been as significant a change there too.
     
    Amw66, Mar 25, 2021
    #14
    Binkie4, Forestvon, Missense and 9 others like this.
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I agree that AfME has been seen to take some positive steps recently. Not all good but not all bad either.

    I'm afraid it will take time and action before there will be automatic trust with anything AfME is involved in. I've seen them consistently throw us under the bus for many, many years. I watched their involvement with PACE at the time.

    If Sonya turns things round then hats off to her. If they do something well I'll happily & publicly applaud that.

    In the meantime, I'll wait and see.
     
    Invisible Woman, Mar 25, 2021
    #15
    RaviHVJ, Annie, Forestvon and 11 others like this.
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Mary Jane Willows, who was head of AYME left last year.

    Who was r=their last science person @Amw66 ?
     
    MEMarge, Mar 27, 2021
    #16
    Forestvon, Peter Trewhitt and Invisible Woman like this.
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    @MEMarge
    You have got me there - sience as an all encompassing description I would struggle with. I am not aware of a " scientific advisor" role previously .
    Previous input has been from various roles - Hazel O' Dowd , Emily Beardall have both contributed - I won't comment on their contribution, there are threads which would elucidate this more succinctly.

    Julia Newton and Gregor Purdie were both medical advisors ( not sure if these are still in place - particularly given Newton' s step down from research)
    Gregor Purdie helped draft the guide for GPs in Scotland which is not bad , it is just dated, and most GPs are not aware of its existence
     
    Amw66, Mar 27, 2021
    #17
    Peter Trewhitt, Invisible Woman and MEMarge like this.
  18. Trish

    Trish Moderator Staff Member

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    Quoted from AfME email April 2021 newsletter:

    Survey: the impact of Covid-19 on people with M.E./CFS
    We’ve teamed up with #MEAction UK to launch a survey looking into the effect that Covid-19 has on people with M.E.

    The survey aims to explore if M.E. symptoms are affected by Covid-19, how long any change in symptoms last and whether cognitive and/or physical functioning changes. The survey also ask about any new symptoms and how long these have lasted. Finally, it looks at the impact Covid-19 has had and whether it has led to increased use of healthcare services.

    The survey will take approximately five minutes and is for people with M.E. who have had Covid-19 symptoms and/or been diagnosed with Covid. Respondents do not have to be a UK resident to take part. All responses will be anonymous.

    Join our Breaking Isolation workshops for young people with M.E./CFS
    On April 10, 17, and 24, we're hosting free Breaking Isolation workshops for young people aged 8-14 who have M.E./CFS.

    These workshops are a great opportunity for those who take part to get to know each other and enjoy fun games and creative activities. They're designed to be fun and not demanding, with breaks built in to accommodate attendees.

    Registration is open online for ahead of Saturday’s first workshop of this block. We look forward to seeing everyone there!
     
    Trish, Apr 10, 2021
    #18
    mango, Ariel, Amw66 and 8 others like this.
  19. rvallee

    rvallee Senior Member (Voting Rights)

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    Odd survey. Looks more like it's simply asking whether ME patients got Covid, and whether they experience PEM, which seems redundant. Unless I missed something, those are the only questions I had.
     
    rvallee, Apr 10, 2021
    #19
    Peter Trewhitt and Invisible Woman like this.
  20. Trish

    Trish Moderator Staff Member

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    I think the point of the survey is to find out how people with ME experienced having Covid infection. If you haven't had Covid, then there would be no more questions to answer.
     
    Trish, Apr 10, 2021
    #20
    It's M.E. Linda, Simon M, MEMarge and 3 others like this.
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