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UK: Workshop: "What big research questions do people with M.E., their carers and clinicians want answered?", 10th March 2020

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Feb 20, 2020.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    https://www.eventbee.com/v/free-research-workshop/event?eid=119084524
     
    MSEsperanza, MEMarge, Gecko and 12 others like this.
  2. MerryB

    MerryB Senior Member (Voting Rights)

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    It would be good if they put out an online survey so people can give ideas as most people won't be able to go to the meeting in person.
     
    Gecko, Wits_End, DokaGirl and 7 others like this.
  3. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I know no more than I have posted above, but they do say "For those not able to attend, the workshop will be recorded and shared online, with the opportunity to add your comments, ideas and insight.", so that might include a survey as a way to input.

    ETA: Oops, missed the very vital "no" when originally posting, have now added it in.
     
    Last edited: Feb 22, 2020
    ahimsa, MEMarge, Gecko and 8 others like this.
  4. Trish

    Trish Moderator Staff Member

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    Although it's part of the CMRC conference, it says at the bottom of the information page that it's hosted by Action for ME.
     
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  5. NelliePledge

    NelliePledge Moderator Staff Member

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    @Action for M.E. for the future you could consider getting more active rather than reactive input from those unable to attend in person. As @MerryB said further up you could do a survey, ask people to post their suggestions beforehand, or you could be more inclusive and run it as a webinar where people can post in real time.
     
  6. Action for M.E.

    Action for M.E. Established Member (Voting Rights)

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    We can confirm that there will be an online session run soon after the conference so that people unable to attend the workshop also have an opportunity to be involved. We will let you know as soon as we have finalised details. However, we are keen to make the presentation from the workshop available as soon as possible and will post this, along with other films from the conference, online.
     
    Frankie, MEMarge, Andy and 6 others like this.
  7. MerryB

    MerryB Senior Member (Voting Rights)

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    An online session, while a great idea, is not as accessible as a survey and will reach a smaller audience.

    Could you do a survey as well perhaps?

    Because if you are asking for the views of people with ME and their carers, a survey can be answered at a time that suits them, at their own pace, with time for reflection.

    And since you are asking for the views of clinicians, most clinicians won't be able to attend a session (either in person or online) at a set time. Since the conference is in Bristol in-person attendance would most favour clinicians who do not share the views of much of the ME Community, e.g. Crawley's crowd.

    But there are clinicians all over the country who might like to share their ideas, who would respond to a survey but couldn't attend an online or in-person session.

    E.g. I could ask my GP to fill out the survey to say what kind of research would be helpful to him in treating his ME patients. This would be a good way to engage clinicians in the conversation.
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    why is it always in Bristol?

    why have no efforts been made to get the 25% group, Tymes trust and Invest in ME and MERUK (former members) involved(?)

    [I know why they won't is because of AfME involvement and former head of AYME, plus up to fairly recently association with EC and SMC, and Stephen Holgate is still another elephant in the room]
     
    Last edited: Feb 21, 2020
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  9. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I think one year Stephen Holgate was trying to arrange it in Southampton, but there was a problem.

    It would be great if it could be held near to some cheaper hotels!
     
    Trish likes this.
  10. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Just spotted that I missed the really important word "no" in my post above, have now added it.

    I still only know what I posted above about the planned use of this workshop, but I am aware that plans are being put in place, seemingly separately, to allow for a far wider consultation with the ME community on this subject, and that will include the use of a survey/surveys - I can't elaborate further at this point in time as I've been told in confidence.

    Because AfME are based in Bristol themselves? I don't disagree with the idea that it would be good to hold it in different parts of the country but I can understand that local, to them, connections might make holding it in Bristol the easy option for them. On the same topic, I've wondered why IiME always seem to hold their conference in London - the venue they use is mightily impressive but must use up a lot of funds that could be used elsewhere.

    Do you know that they haven't?

    I have been critical of him in the past as well, and I'm not sure what you are trying to suggest, but, in all my dealings with him in connection to the GWAS project, I have only found him to be incredibly supportive of both my participation and of the project itself. I certainly would have wanted him to do many things differently in the past but, from what I've seen, he is a very big reason why we have the opportunity for the GWAS.
     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    because it's central and easy to get to for overseas researchers(?) in particular.........
    I'm sure it would be easier for them to hold it in Norwich.
    so? It's the CMRC conference, not the AfME conference.

    on a completely unrelated topic maybe AfME should query why their job advert is under
    "mental health advocate"
    https://www.charityjob.co.uk/mental-health-advocate-jobs
     
    Invisible Woman likes this.
  12. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I don't think London can be fairly described as central.

    True but there are plenty of cities with international airports and suitable venues that, most probably, would be far cheaper - Bristol as just one example.

    And AfME do a lot, if not all, of the organising for the CMRC, so if the CMRC are content to leave it to AfME to decide, it's understandable why it would be held in Bristol. Assuming I get the opportunity, I will raise the idea that they should consider holding their conference at different locations around the UK, I'd imagine Chris Ponting would be keen on Edinburgh.
     
  13. MEMarge

    MEMarge Senior Member (Voting Rights)

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    How do we get the CBm (Cognitive Behavioral myth) of ME off the table?

    This seems the biggest problem in the UK atm.

    It is at the centre of:
    • NIHR spending
    • All medical education, for doctors, therapists/nurses etc
    • Media trivialisation of the disease
    • ME being categorised as a mental health problem
    • Cochrane cock-ups...
    Is there anyway that there could be an independent review of ALL PACE data/style of other BPS studies demonstrating all their bias and flaws.

    I know this is not really answering the question and would probably require Government intervention, as the psychs appear to have a complete stranglehold on medical and research establishments as well as the media.
     
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    and yet Afme hold their agm in London...... just saying
     
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  15. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I really wonder if this isn’t just for show - in the CMRC are now so down with the patients or as if there’s really loads of research we can do we just have to decide, or if it’s a stalling technique in the way the mrc have spent years deliberating priorities in the past , which fills up empty time.

    in reality there’s hardly any research interest in uk so it’s not like we can just pick what we want.

    The charities can easily survey members and associates through the magazine and online on research priorities and this could have been done years ago to inform direction. Ironically i’m not sure if a gene study would have scored higher than CPET & neuroimaging
     
    Last edited: Feb 26, 2020
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