Funding & the Westminster Hall Debate

“This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they [the MRC] should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research.”

Inquiry into the status of CFS / M.E. and into research into causes and treatment (the Gibson Report) 2006 p34

Eighteen years ago the Gibson Report mentioned that £11 million in funding ought to be allocated to ME/CFS biomedical research to match that given in the past to psychosocial research. Underfunding of ME/CFS biological research has been an international disgrace for decades but in last week’s Westminster Hall debate it was stated that “Over the last 10 years, only £8.05 million has been spent on ME research. If that had been equitable to other illnesses, ME would have received over £10 million or more.”

The phrase ‘or more’ would need to do a lot of heavy lifting to get to a figure for acceptable annual funding for ME/CFS biomedical research. Divorcing psychosocial research from biomedical research would mean that inflation alone would swell the Gibson figure to over £26 million in 2023 pricing alone.

The historic chronic underfunding of ME/CFS research is well documented. The 2016 ÜberResearch report stated that ME/CFS research represented approximately 0.02% of all active awards given by mainstream funding agencies – including the MRC and Wellcome Trust. There is also an ongoing disparity in funding received between other illnesses. The ÜberResearch report stated that, although 250,000 people were estimated to have ME/CFS, Multiple Sclerosis (MS), which affects about 100,000 people, had received 20 times the funding.

As ME Research UK pointed out in our response to the draft Delivery plan –

“While prevalence is only one aspect of a disease that affects the level of research funding, research also indicates that people with ME/CFS experience higher levels of functional impairment and lower levels of wellbeing, compared with conditions including depression, cancer and rheumatoid arthritis (RA). Despite this, the research spend per patient for ME/CFS between 2006 and 2015 was just £40 compared with £320 for those with RA and £800 for those with MS.

“The 2016 ÜberResearch report also showed that research spend into psychosocial ME/CFS projects dwarfed that invested by the MRC into biomedical research. Even without research spending being increased to reflect historic underfunding, biomedical ME/CFS research has been an egregiously neglected and underfunded area. In fact, in 2022, the All-Party Parliamentary Group on ME called for Government research bodies to ensure that there is a parity of biomedical research funding between ME and other serious long-term conditions in its report, ‘Rethinking ME‘. This call has not been taken up in the draft plan. The Gibson Inquiry report had called for this parity almost 2 decades before.”

Even taking the NICE 2017 prevalence figure for ME/CFS as 250,000 in England and Wales alone this would equate on basis of £320 for those with rheumatoid arthritis and £800 for those with MS – with an annual ME/CFS research spend of £80 million to £200 million. Plus, the 250,000 figure is not for the whole of the UK and is now regarded as an under-representation and the comparative figures are at least 9 years out of date.

The inadequate funding for ME/CFS research affects the UK nations also. For example in Scotland where ME/CFS’s estimated cost to the Scottish economy is £360 million, (c£17,000 per patient), the Scottish government has funded only 2 projects in the past decade, with the most recent being a co-funded PhD place. The place cost £45,000 to which the Scottish government’s contribution equates to approximately £1 per person in Scotland diagnosed with the disease.

We ought to recall that The 20/20 Health ‘Counting the cost’ report estimated that a weighted minimum cost to the UK of ME/CFS is £3.3 billion, using a cautious assumption of 0.4% prevalence.” This estimate is based on studies calculating costs for April 2014 to March 2015, estimates which are outdated by approximately eight years.

And yet, The Netherlands announced a 28.5 million euros 10-year programme in April 2023, and the German government has funded interdisciplinary collaborations, and so momentum is building for bold investments in ME/CFS research.

£10 million per annum appears a gross underestimate of both the funding required and the funding deserved by those affected by ME/CFS in terms of both prevalence and symptom burden, never mind making up for past failings which runs to many 10s of millions over decades.

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