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UK Research Collaborative means business

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 4, 2013.

  1. Simon

    Simon

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    I didn't think it was being used as a template for ME/CFS research, but as an example of how a patient charity established research priorities, in this case using both health researchers and patients. And bear in mind that for MS, BPS is not such a big factor - I suspect things would have been spelled out more clearly by patients if it had been. If you factor that in then I'm not sure the list is that different from ME - but the point is it's a list of MS priorities, not ME ones. Similarities/differences are interesting, but no more than that.

    Whereas the AfME list explicityly prioritises pathological pathways. Incidentally, the AfME list was based on a survey of poeple of whom 90% had ME. I wonder if the 6% choosing to prioritise psychological research came came disproportionately from the 10% who didn't have ME.

    I also wonder how big the contrast in results will be when AfME send the same survey to researchers.
    My ETA too:
    Good to hear, and I am very conscious of how everything could go wrong.

    It is at least a minor miracle that the CMRC ever came into being given the wildly diverging views represented within it (I gather the birthing pains were immense) and its ongoing existence will no doubt continue to be a 'challenge'. I'm sure there will be constant jockeying for position and attempts to take control of the agenda. That said, I think it has the potential to lead to more and better research in the UK than would have happened if it had never been created- and I think Stephen Holgate deserves immense credit for his work.
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  2. Firestormm

    Firestormm Senior Member

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    Simon It fascinates me that AfME of all charities are doing this survey - when they have no money :)
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  3. Dolphin

    Dolphin Senior Member

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    Most of the same points/principles could be applied to ME. I'm pointing out the problems.

    Charles Shepherd said on MEA on FB on Monday:

    So I don't think we can necessarily assume that they were talking about how it was drawn up. I've seen no mention about it being discussed in the context of how it was drawn up.

    The AfME list has effective treatments as the second item. It could be operationalised like:
    The point I'm trying to make, which you appear to agree with, is MS is different from ME. The BPS is not such a big factor in that illness. So we have to be very wary copying what they do.
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  4. Simon

    Simon

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    I see what you mean. However, I hope AfME and other charities on the CMRC will note the AfME survey that showed 'psychological aspects' had minimal support and didn't make the top 3 of 94% of responders ie patients are not looking for yet more psychological research into treatments for fatigue etc. That road has been well-travelled, with less-than-impressive resutls.
  5. peggy-sue

    peggy-sue

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    Simon said;
    "That road has been well-travelled, with less-than-impressive results"

    I don't know, Simon - they really do spend a lot of time and effort coming up with very impressive acronyms.
    even the latest "money down the drain project" has provided us with GETSET...
    Surely that's worth a few grand?;)

    (For the foggy - I am being sarcastic)
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  6. Firestormm

    Firestormm Senior Member

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    There is ever seen to be a fight between 'treatment' now and 'research' for treatment (or cure) some time in the future.

    Those who are pushing the 'management' options upon us seem to be to be doing very little more than reinventing the wheel.

    All these projects are achieving little - they are not improving on the recommendations in NICE. All they are doing is - in my mind - wasting money.

    Illness Management options are here to stay - until something better comes along. They don't seem very interested in using these funds to find the 'something better' - although that money Esther received recently I think was in part intended to discover if GET was good enough for kids or somesuch; but it still seems a waste and a repetitive waste to me.

    Research - and I speaketh generally - in all other diseases comes in large part (75% +) from the voluntary and/or private sector. Take cancer research if you like or MS.

    The results from the MS survey will like as not help direct - or reinforce - the spending priorities of the MS charity sector and not so much the 'government'.

    I think we perhaps need to start thinking more about what our charities are doing with our money, and slightly less about what da government is.

    The collaborative is not a funding initiative. They have no money. I am interested in their influence and in how a patient survey might help them reach a joint funding venture that embraces all ME charities and (to perhaps a lesser extent) government sources.

    It's potentially very influential. It could for example influence BACME as well as the MRC and that other body I can't remember who funded Esther recently: but it will still depend on attracting researchers to whatever projects are highlighted.

    This is where we have fallen down before. But perhaps collaborative efforts will - unlike in the past - be of sufficient size (£) to make a study significant and attractive.
    Bob likes this.
  7. Dolphin

    Dolphin Senior Member

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    I'm pleased they've been giving money to research in recent years. Generally under £100,000 a year I think, sometimes a lot less than that, but still something.

    I remember for many years, they were just lobbying which I think probably influenced them to support the application of the PACE Trial for funding - so that there was some research happening they could point to.
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  8. Dolphin

    Dolphin Senior Member

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    Yes.

    And I don't want to see the collaborative coming up with something which would overly justify more funding of such research.
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  9. Dolphin

    Dolphin Senior Member

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    In 2012-2013, they spent £57,713 (ref:

    http://www.actionforme.org.uk/Resou...informed/annual-report-and-accounts-12-13.pdf )

    They have the following policy now:

  10. Dolphin

    Dolphin Senior Member

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    A small bit of qualitative data from Action for ME's research priorities survey

    http://bit.ly/17I1CPn i.e.
    http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/annual-report-and-accounts-12-13.pdf

    The 6 NIHR-funded projects I mentioned here: http://forums.phoenixrising.me/inde...ative-means-business.23574/page-3#post-394575 don't do a good job in doing this, I would say.
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  11. Firestormm

    Firestormm Senior Member

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    Dolphin I think you might find that much of this research money has in recent years been in support of the collaborative effort to get the Biobank up and running. Though it may be AfME are unable to continue supporting this (I would say) vital initiative.

    As a general point - I would certainly endorse a statement from any charity declaring x% of all donations (including legacies) being reserved automatically for biomedical research projects.

    I was discussing with others about the positives and negatives of promoting individual projects rather than simply having a general research fund for donations.

    I think it appeals more to people if there is a definite project - with details and reasons. I believe it would result in more support on the whole.

    Rituximab and IiME is perhaps an exception - but it could be indicative of the way things should be done in future. I mean having a designated project has resulted here - and with e.g. that clinical centre of excellence (though I'm never sure where they are with that) in funds being raised and from sources that previously unknown sources.

    There are downsides to designating projects e.g. it can tie you to the project, the project might not come to fruition, what happens if you don't raise enough cash etc. But for existing projects e.g. Biobank or for infrastructure, then why not? At least people have a better idea of where their money is going, and who is endorsing it and why.

    Of course it also helps to have a highly motivated, committed and innovative fundraising team.

    Any thoughts?
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  12. Dolphin

    Dolphin Senior Member

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  13. Dolphin

    Dolphin Senior Member

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    I think one needs a mixture. Ring-fenced funding for particular projects can be useful for fundraising. But I think ideally one wants a range of angles being looked at (rather than just one or two big projects) and it could be slow and awkward for researchers if they always had to wait for money to be raised (and they might not be sure it would be raised).
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  14. Firestormm

    Firestormm Senior Member

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    I am afraid that isn't the case. Those charities - MEA, MERUK, and AfME - who have got the project this far, will all be asked (and are in fact considering) to continue funding this project even with the NIH money in place.

    Am afraid I can't break it down for you at the present time but hope to at some point.
    Dolphin likes this.
  15. Dolphin

    Dolphin Senior Member

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    Thanks. Interesting.
  16. Firestormm

    Firestormm Senior Member

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    I didn't mean that to sound like 'I know things that you don't' it's just that I do know things are in flux at present and that you should get an announcement about who is doing what and how much, shortly.

    It is true though that the charities will be needed to continue funding despite the NIH contribution. To be honest, it's all a mess in my own head, Dolphin, and I haven't had a chance to sit down and work all the figures out.
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  17. Dolphin

    Dolphin Senior Member

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    No worries, Firestormm. It is useful information you have shared.
    Firestormm likes this.
  18. Esther12

    Esther12 Senior Member

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    I thought I'd already seen this mentioned elsewhere, but I thought that I should add that the Susses and Kent ME/CFS society is now a member.

  19. Bob

    Bob

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    Do you happen to know what type of member? Non-executive perhaps?
    They very much support the psycho-social side of things, including promoting LP to their members.
    Esther12 likes this.
  20. Esther12

    Esther12 Senior Member

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    It said 'associate member' - have to admit that I'm not really sure what that means.

    Didn't the guy who runs it have his wife report being cured by lp? That may be a confused semi-memory though, so don't pass it on! Any embrace of lp represents a disturbing embrace of quackery though.

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