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A Competitive UK Research Strategy

Discussion in 'ME/CFS research' started by Matt (@DondochakkaB), Apr 25, 2018.

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  1. Matt (@DondochakkaB)

    Matt (@DondochakkaB) Established Member (Voting Rights)

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    34
    So another day, another...shopping bag study.

    I think in the UK we're overdue a vision for research going forward. There's plenty of critques of research, but I haven't seen a lot of competiting plans showing research necessities and opportunites for expansion. Moreover I think it would be really valuable to have a research strategy that is widely supported by the patient community.

    Often people will ask for things like 'more biomedical research'. But I think there needs to be more nuanced demands.

    What are your ideas for research necessities and what would be a good way of putting together a strategy that patients can agree on?

    In my view, two key areas to focus on would be:-

    1) Identifying promising international studies and replicating/developing them using UK patients.
    2) Seeking funds to expand existing research teams who are successful and have the capacity to increase scope and output.

    For example, if someone like Professor Newton could increase research output with a bigger team and more resources, I think it would be wise for patients to lobby for that.

    Lastly, I'm curious if there are ways as a community we can, identify, endorse and support quality requests for MRC grants.

    I think it would be much easier to criticise the things that actually get funded if we are able to clearly demonstrate necessities and show that there is enthusiasm and expertise ready to explore them.
     
    Matt (@DondochakkaB), Apr 25, 2018
    #1
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  2. Hutan

    Hutan Moderator Staff Member

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    26,889
    Location:
    Aotearoa New Zealand
    Thinking about current UK research initiatives worth supporting, there is obviously the biobank.

    I'd like to see the UK researcher working on visual disturbances in ME given more support. I've forgotten her name. I'm not aware of any other researcher in the world looking at this. Identifying specific visual disturbances might contribute towards a suite of biomarkers and identifying a cause.

    When I have PEM, my vision goes blurry. Possibly tracking visual issues might be a cheap and non-invasive way to quantify trends in the health of people with ME - and therefore be of use when evaluating treatments.
     
    Hutan, Apr 25, 2018
    #2
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  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think Dr Hutchinson and team at the University of Leicester have been researching spatial vision.
     
    Invisible Woman, Apr 25, 2018
    #3
    Skycloud, ladycatlover, Hutan and 2 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,490
    Location:
    London, UK
    A number of us, when members of another forum, published a review of this in Fatigue and Biomedicine. Relication was highlighted, together with brain imaging and immunology.

    As much as anything what we need is a single meeting place for researchers where patients are also welcome. In the past things have been fragmented but there is now a chance things will change. That should also tie in to the Euromene group.
     
    Jonathan Edwards, Apr 26, 2018
    #4
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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    Still the most read article in the journal it seems, just ahead of the Wilshire reanalysis of PACE recovery outcomes: https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598
     
    Esther12, Apr 26, 2018
    #5
    Skycloud, andypants, Jenny TipsforME and 4 others like this.

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