Thread by @Squashedhedgi

This thread =about #ME charities position on the need for more research & funding. I had a “problematic” discussion with the MEA on this last week, not just bec we disagreed! but their position “seems” afaiu at odds with what many in #pwME want/need or are they right? #mecfs

2) An Meruk report a few yrs ago seemed to agree with MPs calling for action as lack of progress, suffering & economic cost was unacceptable meresearch.org.uk/commons-debate…

They said the ministers response to calls in HoC debate for more research “was disappointing in the extreme“

3)Stephen brine then minister said “As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research &the MRC through UK Research a&Innovation. Together, the NIHR&MRC welcome high-quality applications for”

4) “research into all aspects of ME, which would absolutely include biomedical research. The MRC has had a cross-board highlight notice on ME open since 2003, updated in 2011, inviting innovative research proposals, alongside a bespoke funding call in that year. “

5) “ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted. Members have said this afternoon,“We must surely fund more research,”but Ministers do not sit in the Department of [[H& SC]] &decide on what to do “

6) ..”research on.
One of the great legacies of the late Baroness Jowell was that she understood in brain tumour research that we need to stimulate that research community to come forward with the best research proposals that then can be successful in bidding for funding.”

7) “The truth is — sometimes it is a hard & inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma ...& partly because of the division in the medical community. We need people to come forward with good research”

8) proposals in this space; that can only be advantageous.”

Note, both reasons put forward as blocks to interest by the minister = not at all patients fault! nor did he seem to feel it his duty to overcome them. The research market must apparently just meander until interested

9) My problem is, I can see little, if any difference in what the minister said, which most agree = v disappointing & what Dr Shepherd leader of The MEA association said to me, last week - Here are extracts, entire thread available to anyone who wants to see on Facebook

10)Dr S “I spent..afternoon at a research meeting that looked the need to bring in new researchers into MECFS &submit high quality research applications to the MRC &other[s]..Yes-a lot more needs to be done but we are not ignoring the need to stimulate more biomedical research”

11) Me:“In 2021 with so little research progress, charities shd be about calling out the suffering &need &demanding fair funding assistance from the state to have the type of funding calls &swift action longcovid has had.They got a £20m biomedical research fundng Call last year!”

12)Dr S “it’s not simply a question of funding. We have clinical data &blood samples from people with severeME available for us at the ME Biobank. We need high quality research applications from people who want to use them.I was at a research meeting yesterday where the person..”

13)“responsible for ME/CFS was there. The MRC has issued a highlight notice to encourage research grant applications. There is funding available.They want to receive high quality research grant applications that would include people with severe ME/CFS. 1 of the purposes of the..”

14) “meeting yesterday was to get new research blood into ME/CFS - including those who are now working on Long Covid research.”

15)Me:”We’ve heard the “need for HQ applications” & “new research blood” for decades, wasn’t that the point of the CMRC 2013? clearly in this misreported field, research applications are still hardly happening
...
The Yrs old #CFS MRC highlight notice hasn’t worked bec of stigma”

16)Re. The Stephen brine comment - was he saying we wdt get HQ funding calls even if like brain tumour research we= given about £50m to stimulate the field & therefore there’s no point as there’s no interest...which would poss be a justification of the gvt & it seems MEA position

17) Or r they both wrong, as I am inclined to think, in that funding calls/set aside funding Cd overcome the lack of interest & get HQ research applications?

Imo both gvt & MEA seem to excuse &accept the tragic lack of progress - even if it’s the fault of medical world itself

Hi @threadreaderapp can you unroll please?