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Invest in ME: UK Charity Pledges £500,000 for Research into ME in Norwich Research Park

Discussion in 'BioMedical ME/CFS News' started by Andy, Dec 2, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    http://www.investinme.org/IIMER-PR-20191201.shtml
     
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  2. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Hello. Does anyone know on what basis or theory, the FMT trial is based on? I had seen some research from Norwich saying that got micro biome is slightly different in any ME patients than in healthy controls. But why do they think FMT will help symptoms of ME? Is there any evidence that the disturbed microbiome it's part of the root cause, because isn't a disturbed microbio found in many diseases?

    I know that FNT is used for specific issues like C. difficile but in this case are there any specific bacteria they are looking to knock out? Are there any specific theories as to why they would do this trial?

    Sorry for errors dud to dictation app
     
  3. Trish

    Trish Moderator Staff Member

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    I am sceptical about FMT as a treatment for ME, but there seems to be quite a lot of interest in whether gut microbes could be involved in a lot of chronic illness.

    I hope, with all that money involved, it means they can do a really high quality double blind study, with as much other data collected from the patients before and after treatment and at long term follow up, as possible not just the usual questionnaires.
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I’m a bit confused by this. Do they already have this £500k from the funds they were collecting for a U.K. rituximab trial? I gave donations towards that and to be fair if I’d known it was going to end up going to FMT I would have given my cash elsewhere. If they haven’t already got the cash how are they expecting to get it I saw another post where their target for Christmas fundraing is £5k.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think these are reasonable questions.
    I do not personally think we have anything like enough information so far to justify a trial in ME.
     
  6. strategist

    strategist Senior Member (Voting Rights)

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    There is a case report of a man supposedly cured by consecutive FMTs.
    https://m.scirp.org/papers/75761
     
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  7. Kitty

    Kitty Senior Member (Voting Rights)

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    This is what I assumed, but I don't know for sure.

    Whenever there's an appeal for a specific project that ends up being shelved, the charity will default to whatever conditions were written into the conditions of the original appeal. It can be as vague as 'furthering the charity's principal objects', but may also be restricted to a particular type of work, e.g. a clinical trial. They always have the option to involve service users in the decision about what work to pursue, but there's probably nothing in their constitution that says they must do so.
     
  8. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I considered this was premature, too (my highlighting). In this case, funds were rolled forward to the UK XMRV blood draw project (the rest, as they say, is history):

    From 2010:

    http://www.investinme.org/IIME Biomedical Research 2009 12 01-X.htm

    Invest in ME Press Release

    Funding of Biomedical Research into ME


    In December 2009 Invest in ME announced its plans to attempt to fund research by Dr Jonathan Kerr. This was in conjunction with the charity ME Solutions and we wished to maximise the opportunities to fund research into ME/CFS. The research project was -

    The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

    Recently Dr Kerr informed us that he was withdrawing the grant application as a study in which he was involved has shown no XMRV in ME/CFS patients.

    This now means that the fund-raising for this particular project will be halted.

    Invest in ME have contacted those supporters who have donated funds specifically to aid this particular project and we have offered to refund the donations. We are happy to announce that all our supporters have requested that we retain the funds donated and use them for biomedical research.


    The supporters of IiME, those who fund and those who provide moral and other support, are the finest in the ME community. These supporters remain, for the most part, anonymous yet they continue to be the source of our determination to continue to campaign for biomedical research and raise awareness and improve education about myalgic encephalomyelitis.

    Therefore, we are planning on helping the Whittemore-Peterson Institute directly by offering to fund some important work on XMRV in UK/European patients. We know this may not be a massive contribution in the grand scheme of things but we feel it is important to give as much financial support, and all the moral support that we can at this time to the WPI and their research colleagues.

    We hope to have more news soon.

    Invest in ME will continue to campaign for biomedical research into ME and we hope to be able to fund more such work in the future.


    UPDATE 5 March 2010:
    Invest in ME will contribute funding to the Whittemore-Peterson Institute to perform biomedical research into ME. More news will be added later .


    Donations

    Invest in ME welcome any support - financial or moral support - for our efforts to raise funds for biomedical research into ME.
     
    Last edited: Dec 2, 2019
  9. andypants

    andypants Senior Member (Voting Rights)

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    Besides, there’s already one well underway in Norway so one would think waiting for those results first could save a lot of potentially useless spending.
     
  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Forgive me here because what I'm trying to say will be a little vague and I am always a suspicious of motives type of person.

    I may have the completely wrong idea but I wonder if the choice of FMT research stems in part from not just specific concerns of researching ME but also works to have other benefits such as; the microbiome information is useful on it's own and can be repurposed for other use and that of the situation that this research group is in a 'research park' where resources are shared and so is a business decision not purely a science decision?

    I hope that's clear. And I realise I may just be overly cautious about something I know almost nothing about. I'm not trying to cast any of this in an unflattering light. It's just that increasingly we see that science is business and that this is often what drives decisions.

    And I expect for those who have gut issues this may well be welcome news. But that would mean that the gut issues are primary to what is going on wouldn't it? I admit my self-interest lies elsewhere. So if they're doing this like Trish I hope they do the best research possible to get some answers.
     
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  11. NelliePledge

    NelliePledge Moderator Staff Member

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    I had cynically assumed the reason they were going down the FMT/gut route was probably because they are in the east of England and that’s what the people at UEA are interested in working on rather than it necessarily being top priority as an area for ME. But I see they’re in Hampshire so I don’t know what the links to UEA are.
     
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  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Kathleen McCall, the chairperson, is in Hampshire but the Simpsons are in Norwich. I, too, presume a big reason they are looking at things microbiome-related is that is what the research group they are connected with are interested in. They were previously interested in doing the Rituximab trial which isn’t really connected to the microbiome.
     
    Last edited: Dec 2, 2019
  13. Andy

    Andy Committee Member & Outreach

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    Online version of press release, http://www.investinme.org/IIMER-PR-20200701.shtml
    PDF version of press release, http://investinme.org/Documents/IIMER-Press-Releases/IIMER-PR2020-07-01-NRP-Research.pdf
     
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  14. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    This is the mission of the Hendrie Foundation
    https://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1144317
    It looks like one of the foundations operating areas is Essex.

    Financials for the Hendrie Foundation are under the documents tab in the link above. They don't seem to report exactly where disbursement of funds goes. Income seems mainly from investments.
     
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  15. Kitty

    Kitty Senior Member (Voting Rights)

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    Having worked with small trusts and foundations in a different field, a lot of them prefer to develop ongoing relationships with one or two organisations rather than churn out large numbers of small grants. It helps them get value and impact for their investment, and as a lot of them don't have paid staff, processing grant applications can be really onerous. This looks like one of those relationships.

    Often they seem to come about almost accidentally – I remember one trust making several grants to support work I was doing in making theatre for young people with profound & multiple learning disabilities, just because they were interested in it and saw real value in it. The first application was one of at least two dozen I'd sent out, basically to every trust I could find whose grant programme was open and whose objects the work met. I'd never heard of them before I found them in a directory, they'd never funded that kind of work, but it turned out to be a really good partnership.
     
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  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I may have it wrong but think I recall this perhaps was set up after a young-ish man with ME died and was set up by his family??
     
    Last edited by a moderator: Jul 28, 2020
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My understanding from having discussed funding with the trustees on several occasions is that this is a legacy managed by friends of the benefactor. The trustees are sympathetic to ME but not I think because of any connection between the benefactor and ME. The use of the money appears to be at the discretion of the trustees without any formal assessment process.
     

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