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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Senior Member
Surely we are worth more than £4 /person research spend per year!
If £1m per year (rough current ME Funding) research spending truly represented a jolly good deal why would the government, who have targets to find dementia treatments by 2025, have decided it necessary to increase dementia Research funding to £160m per year?
Tories pledge to double dementia research funding https://www.bbc.co.uk/news/election-2019-50523507

I’d be interested if anyone has more up to date UK ME/CFS state research funding comparison stats. I made this based on older data. Not much has changed for ME but it might have for other illnesses. The irony is the report I based most of my table on was commissioned by the MRC, which I take as an illustration of the establishment trying to control the narrative whilst keeping us firmly down trodden.

The funders certainly haven’t responded to the stark facts of their own report in a fitting way & the CMRCs own response in the report (CMRC work with the MRC) is equally lame (see here, page 17 ) https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

They said this

“The CMRC will increase its work with mainstream funders in the UK and will circulate the report to these agencies with a request that they reconsider their current positions vis a vis the specific allocation of funds to ME/CFS.”

But given nothing happened on ring-fenced funding (RFF) I assume the MRC & NIHR said no and our representatives said okay as has happened before. This is not robust advocacy, it is charities tied into a collaboration that buys their silence. The MRC, after two failed attempts by the genetics team at the CMRC to get funding, did apparently “invite” a research application, which is the decodeME study now funded, but given they are funding nothing else the funding levels per person per year still remain similar to This picture. We are not getting more money, just less ,fortunately, is being wasted on behaviour intervention.

The CMRC gave Sonya Chowdhury just 8.30 minutes to present on her report at the 2016 conference (with no discussion, apparently she didn’t want any questions on the biggest obstacle facing our community) and it was followed by an MRC representative not addressing anything about their funding failure but just lecturing for 50 minutes how ME researchers could make better applications which frankly says it all.

To put it in context, the funders argue that it’s not their fault that researchers aren’t interested in working in the ME field (it’s not our fault either!) however they refuse to do the standard thing to encourage research applications which is to put out a ring fenced funding call, on the grounds that they don’t normally do such a thing for individual illnesses but more general areas of medicine eg neurodegenerative conditions (they did however do so for HIV). However we fall victim of being currently outside standard classification with an orphan illness & they have just put out a funding call for longcovid for £20 million.

I think that we as a community need to put our own pressure on UK funders when our charities have committed themselves to working in a collaborative where presumably the MRC/NIHR component could just pull out if our charities complain too loudly.


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Senior Member
I’ve just worked out that if we had had just half of the pe person spending the CMRC report said went to multiple sclerosis (MS) in the Uk we would have had £126m for research over the period 2006- 2020 instead of about £15 million (probably very generous overestimate )With a good portion of thAt going on behaviour treatment research