A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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UK: funding of ME/CFS by major institutional funders over the past decade

Discussion in 'General ME/CFS News' started by AndyPR, Sep 29, 2016.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    Link to ME Research article http://www.meresearch.org.uk/news/mecfs-funding-report/

    Link to report (PDF) http://www.meresearch.org.uk/wp-content/uploads/2016/09/mecfs-research-funding-report-2016-final.pdf
     
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  2. TiredSam

    TiredSam The wise nematode hibernates

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    upload_2016-9-29_14-31-39.png

    And here they are getting their snouts in the trough again.
     
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    upload_2016-9-29_14-40-6.png
    Well if you start a sentence like that, that's me convinced. No need to elaborate, I'm won over.

    Well we can't throw the psychs out then can we, they're the experts. But it's very good of them to allow a "sprinkling" of other scientists / researchers on the say-so of Sir Simon:

    From the email reported by @John Mac here:

    http://forums.phoenixrising.me/index.php?threads/uk-me-cfs-research-collaborative-cmrc-annual-science-conference-2016.47067/page-2#post-768731
     
    Last edited: Sep 29, 2016
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  4. Simon

    Simon

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    From the MEResearch piece

    It is these institutional funders who need to step up to the plate in a major way, and who have been failing in this task over the past decades, as the report shows....

    Stephen Holgate, writing in the forward“This report presents hard evidence of the chronic lack of research funding for ME/CFS from major funding agencies. I am delighted that the MRC will now review its highlight notice as a result, and hope that the report proves to be a foundation for other mainstream funders to reassess their attitudes towards ME/CFS and review their funding policies towards the illness.”
     
    Last edited: Sep 29, 2016
  5. Snow Leopard

    Snow Leopard Hibernating

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    I'm glad that someone looked into this.

    The UK research councils and institutional funders should publish summary statistics on where their funding goes as a matter of public interest.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    That's a grim list of names.
     
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  7. TiredSam

    TiredSam The wise nematode hibernates

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    As long as the likes of White and Crawley manage to position themselves at the front of the queue in order to further their own careers, play politics and spin results, I can't avoid being glad that the institutional investors are not on the plate yet.

    Look at the harm the BPS crew and their network of supporters (SMC, Lancet, DWP, QMUL, AfME etc etc) caused to ME sufferers on an international scale the last time they got their hands on a few million. Now they have decided they can go for larger amounts, rebranding themselves by borrowing the language of biomedical research and graciously adding a sprinkling of "not particularly connected to CFS" researchers, while their shill Chowdhury becomes our champion author of the above report (great job in the section on terminology / criteria by the way).

    I'd rather see no funding and no research from the UK given the current situation. Not worth the risk.
     
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  8. Esther12

    Esther12 Senior Member

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    This research is terrible, and there's not enough of it!
     
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  9. worldbackwards

    worldbackwards A unique snowflake

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  10. Janice Hargreaves

    Janice Hargreaves

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    I just can't understand how E Crawley and P White can be allowed near anymore public funding into ME/CFS after the PACE debacle. They have been shown to make exaggerated claims about their pet theories. How can this happen? Have I missed something? Am I in some parallel universe?
     
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  11. slysaint

    slysaint Senior Member

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    Was reading about Clare Francis (President of AfME)

    ‘Luckily I was one of the 60 per cent of sufferers who recover – though are never quite the same. It took me about ten years to feel better.
    ‘Although I have recently resigned as trustee of the charity Action For ME, I remain its president. The charity is one of my great passions.’

    Questions; 60% recovery rate.... ? is that correct? Does she really know what is going on?
     
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  12. Aurator

    Aurator Senior Member

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    They have big mouths and few scruples, and promise to give NICE and the NHS irresistibly low-cost "solutions" on a plate. Does anyone really believe NICE and the NHS hierarchy are seriously intent on tackling ME/CFS fairly and squarely when it is so much cheaper for them just to keep sweeping it under the carpet?
     
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  13. Esther12

    Esther12 Senior Member

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    Wow - they really are living in a fantasy land.
     
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  14. BurnA

    BurnA Senior Member

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    Indeed, if she said it tongue in cheek I would be impressed but i get the impression it was said in a sincere tone.
    Recover, but never quite the same eh?
     
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  15. Cinders66

    Cinders66 Senior Member

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    Is this the kind of president where you are essentially invisible and do nothing?

    I'd class that as nearly recovered , despite the apparent difficulty in defining this AFAIC it's being symptom free , as you would be without illness.
     
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  16. Cinders66

    Cinders66 Senior Member

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    Pretty astonishing that this report isn't generating more interest. I don't know why PACE gets everyone going and this, other side of the coin scandal, just doesn't seem to be an issue for many. It's a scandal as it's not as though no ones known the gist of this , it just hadn't need written in an investigative report way before. It's very useful but just makes the fundersneglect and the charities failure to call them up on it, indeed writing solidly in defence of MRC decisions and activity, even worse.
     
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  17. BurnA

    BurnA Senior Member

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    They give the psychobabblers loads of money to produce awful papers concluding that talking and exercise will lead to recovery and then they wonder why they don't get more funding ?

    This report itself is a waste, if they want to get serious they need to abandon ship and start again.
     
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  18. Cinders66

    Cinders66 Senior Member

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    As the MRc clearly haven't accepted any flaw with their own uk approach past 10 years and are still patient blaming I don't know if we will see progress. The report I think is a valuable tool for campaigners, but if the only campaigners are isolated patients then the establishment mavhine will keep rolling. I would like to see call for specific amount ring fenced and targeted as in the USA. Another years gone by with no uk money for biomedical research £0 whilst young people rot away with unrelenting illness.
     
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  19. eafw

    eafw Senior Member

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    So the CMRC do the study about how much ££ goes into research (not the quality of that research mind) and have now come up with MEGA, as a nice easy solution to present to the MRC ..." look here funding bodies, we're going to do **Big Data** (and milk it for loads of papers for our careers) .. and er, yes of course the patients want this ... there was a petition !"


    It is an issue, and it is very tied to PACE as the biopsycosocial projects have been the ones sucking up all the funding. And this is exactly what MEGA is designed to do too. We need the right sort of studies, not simply money chucking at all the wrong things.
     
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  20. Cinders66

    Cinders66 Senior Member

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    I think we have needed far more money than alone was going to BPS studies and what is going to MEGA. There has never been a concerted effort or heavy injection of cash into the biomedical side of M.E. PACE /FINE obviously got loads as it was supposed to be definitive, the establisment proving beyond doubt that their Pet theories were safe and effective. Since then, MRC like NIH, have argued that theres been no clear hypothesis to test. no clear leads and no drug trial ready for phase 2-3 investment for them to fund - these things ususlly rise out of the private sector but the ME private sector is weak with little funds and little research interest due to the CFS narrative.

    i do not know what the thinking behind MEGA is, i know before when Sonys Chowdhury was looking into world research and gaps that it felt to me like it was being offered up as UKs "contribution' and given how little they ususlly invest it woukd probably gobble up not just the money but all time and focus. However, patients could argue not for abandonment of the plan outright but a broadening, with uk taking on responsiblity to encourage, promote and incentivise (RFAs) research across many areas. So MEGA isnt our lot as PACE and the 2012 MRC round projects clearly were supposed to be over their time.


    If one was being extremely cynical MRC activities post PACE could be seen as procrastination and planned spinning out the status quo as long as possible. MEGA is going to be one of those very long drawn out studies and its being presented as all uk will focus on, that would mean by 2021-2 we will only be perhaps a bit further forward other than subgrouping an umbrella people with ME never agreed to bring dumped in in the first place. But maybe that's unfair, I await more expert views as to how much the study could shine scientifically on ME beyond what Naviaux and Davis and NIH are doing (with speed)
     
    Last edited: Oct 2, 2016
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