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UK Genome Wide Association Study (GWAS) project: indicate your support and/or willingness to take part and/or join the mailing list

Discussion in 'Advocacy Action Alerts' started by Andy, Dec 23, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    If we can show that the project has a high level of support from the community then it will enhance our chance of securing funding.

    How to do this? Go to the https://mebiomed.org.uk/get-involved/

    You should see
    Screenshot 2019-12-23 at 08.22.02.png

    with the survey in a separate box on the page under the block of text that starts "Would you be willing to potentially take part...". You will need to scroll within that box to see all of the survey options.

    If you don't see it the first time, please close the page/tab and try again.

    If you still don't see it unfortunately, at the moment, I have no solution that I can advise. However, this is not the one and only chance to express your interest/join our mailing list, should we secure funding then we will have an improved system in place.

    Please share as widely as you can, to help, here is a Tweet
    Code:
    https://twitter.com/s4me_info/status/1209040116901130240?s=20


    and a Facebook post
    Code:
    https://www.facebook.com/sci4me/posts/1010241746028901
     
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    Thanks very much - I have signed up. I do hope they get a grant. I've been wanting to sign up for research into ME for as long as I can recall, and I've had it for over 24 years!
     
    merylg, janice, Simon M and 9 others like this.
  3. MeSci

    MeSci Senior Member (Voting Rights)

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    I've sent the following email to four people, three of whom have ME and the other who has friends with ME:

    'Dear All,

    There is some important potential ME research proposed, and sufferers can indicate their possible willingness to participate here (filling in this form does not commit anyone to participating):

    https://mebiomed.org.uk/get-involved/

    (Let me know if the link doesn't work)

    from this page: https://mebiomed.org.uk/faqs/

    "The ME/CFS Biomedical Collaborative: Genetics and Biomarkers is the working title for a partnership of researchers, including Professor Chris Ponting and the CureME UK ME/CFS Biobank (UKMEB) team headed up by Dr. Luis Nacul, and ME/CFS patients, cares, and public. Early in 2020, the collaborative will make a grant application to the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) for a very large genetic study, a genome-wide association study, and major expansion of the UKMEB."

    "Post-exertional malaise (PEM) will be a mandatory symptom."

    "We have chosen online recruitment and the “spit-and-post” design. This makes it possible for people who are severely affected with ME/CFS to join the study. It may also be possible for family, friends and carers to assist in completing the questionnaire and sending back the saliva sample."

    Please forward to anyone else who may be interested.

    Thank you.'

    Anyone can use the wording if they want (if it's any good - I'm not quite with-it at present).
     
  4. MeSci

    MeSci Senior Member (Voting Rights)

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    Just noticed a typo above: "Dr. Luis Nacul, and ME/CFS patients, cares, and public".

    Can somebody notify them? I can't find anywhere to email.
     
    Invisible Woman, Kitty and Andy like this.
  5. Andy

    Andy Committee Member & Outreach

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    Thanks for highlighting it, I've let our website person know, obviously with Christmas it may take a while to be changed.
     
  6. Ravn

    Ravn Senior Member (Voting Rights)

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    The title may be confusing with its mention of the UK. In fact, anybody anywhere can register their interest (I just did, and there was a field to enter your country). In the FAQs it says:
    https://mebiomed.org.uk/faqs/

    They probably prefer to stick to the UK if they can recruit enough patients there. However, it would surely help the grant proposal if they can show large international interest as a backup plan.
     
  7. Andy

    Andy Committee Member & Outreach

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    Typo now sorted.

    Text has also been added to the page with the survey, to help those who might want to fill it in.
     
    MEMarge, MeSci, Trish and 2 others like this.
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Already done and shared with the person who runs the nearest local group.
     
    MEMarge, MeSci, ringding and 2 others like this.
  9. Barry

    Barry Senior Member (Voting Rights)

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    My wife just picked up this typo:
    upload_2019-12-24_20-1-22.png

    I think I'll have a wander round and see if any others jump out, as it doesn't look good.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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  11. Andy

    Andy Committee Member & Outreach

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    Thank you for highlighting those issues Barry, I'll pass them on.

    You say that, yet all you found was one missing letter and some numerical numbering that obviously hasn't worked as expected. Currently we aren't even working with a shoe-string budget, we are relying on people volunteering their time and paying for things out of their own pocket, so for you to find only those two errors, while regrettable, I would argue is excusable given the circumstances.
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    Yes I appreciate that Andy, and I apologise for my rather tactless wording. But to clarify where I was coming from: I had asked my wife to look at the link I sent, because we had discussed it a bit and how it was sounding out interest in potential ME/CFS research that could be ground breaking with some very high calibre science and scientists involved.

    I had already put my name down as being interested, and not spotted the typo.

    Bear in mind my wife, like a great many pwME, is not science-oriented though fully appreciating its importance to us all; she copes by doing other things, and is not involved in advocacy etc.

    It was probably my fault by not forewarning her beforehand that it was not a medical science team that had put the page together, but volunteers themselves pwME, and that it is very preliminary. So as she was looking at the page she simply exclaimed "Well they may be medical scientists, but can't spell 'disease' can they!". I then explained.

    So yes, I do fully agree it is understandable, and how people are putting in superb efforts. But it would be wrong for me to not point out, for the greater good, that my wife (and others in a similar position) might have seen it as a red flag. When I myself am trying to assess the legitimacy of a website, any website, such misspellings are sometimes a clue. If my wife had not known the legitimacy from me already, she would have been suspicious of it, and I just worried that others might also. Needless to say my wife did respond with 'Yes'.

    I was actually trying to help.

    I would have been more than happy to proof-read content.
     
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  13. Andy

    Andy Committee Member & Outreach

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    Social media from various charities is picking up now that the holidays are over.

    ME Association monthly poll is about the GWAS, get to the poll on the MEA's website here, https://www.meassociation.org.uk/ (scroll down until you find it).
    Code:
    https://www.facebook.com/meassociation/posts/2733310623393245


    They also have an article about it here, https://www.meassociation.org.uk/20...enetics-research-into-me-cfs-06-january-2020/

    and have tweeted


    Action for ME have tweeted


    and Facebook'd
    Code:
    https://www.facebook.com/actionforme/posts/10157896580038209
     
    MEMarge, rvallee, ringding and 3 others like this.
  14. Andy

    Andy Committee Member & Outreach

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    MEAction Scotland have tweeted


    and Facebook'd
    Code:
    https://www.facebook.com/meactionscot/posts/2541088129545599
     
    MEMarge, Nellie, lycaena and 3 others like this.
  15. Andy

    Andy Committee Member & Outreach

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    As has MEAction UK


    Code:
    https://www.facebook.com/MEActNetUK/posts/2447926412191974
     
  16. Eagles

    Eagles Senior Member (Voting Rights)

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    MEA Website Survey: Why are we asking about genetics research into ME/CFS? | 06 January 2020

    https://www.meassociation.org.uk/20...enetics-research-into-me-cfs-06-january-2020/

    Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

    The ME Association has been actively involved with the ME/CFS Biomedical Partnership in preparation of a major research grant application that will investigate the genetics of ME/CFS.

    The ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

    The partnership will shortly make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study (GWAS)…
     
    MEMarge, Simon M, Michelle and 7 others like this.
  17. Andy

    Andy Committee Member & Outreach

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    The poll options

    • If funding becomes available from the MRC would you be willing to take part in research that will investigate the genetics of M.E.?
    • Yes. I have M.E. and I support this research.
    • Unsure. I have M.E. but I am not sure of my support at this stage.
    • No. I have M.E. but I do not support this research.
    • Yes. I don’t have M.E. but I support this research.
    Poll can be found on their homepage, https://www.meassociation.org.uk/
     
    MEMarge, Simon M, Michelle and 5 others like this.
  18. Sasha

    Sasha Senior Member (Voting Rights)

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    Has ME Research UK been contacted? They have over 8,000 followers on FaceBook and 1,000 on Twitter.
     
  19. Andy

    Andy Committee Member & Outreach

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    Yes, they are part of Forward-ME, who are part of the PPI Steering Group, so should be getting the all the updates via Margret Mar. AfME and the MEA are more directly connected to the project, so it's understandable that they'll be quicker off the mark with promotion.
     
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The NEN – North Edinburgh News
    Letters: Support the M.E. study


    https://nen.press/2020/01/07/letters-support-the-m-e-study/
     

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