UK Parliamentary Question on ME/CFS funding

With attention now turning to what the final version of the Interim Delivery Plan on ME/CFS will contain in light of comments received, including those from ME Research UK , showing the woeful lack of central funding for ME/CFS biomedical research over decades and (summarised) stated that

“The central issues facing biomedical research into ME/CFS are already well known, and have been for decades.

  • There is no commitment to ring-fence dedicated funding for ME/CFS research, to reflect the disease’s prevalence and severity.
  • There are no strategies to keep established researchers in the field and to help them build capacity, or to encourage early career researchers to specialise in ME/CFS research.
  • The initiatives appear more about process than results.
  • The deliverables are weak.”

It is disappointing to find that fears that funds provided from the government for DecodeME and the Priority Setting Partnership, either directly or via grants to charities (not ME Research UK), may be the high-water mark of investment unless there is a radical change in attitude and approach.

In a Written Question to the Department for Health and Social Care (which is the lead department in development of the Delivery Plan) by Daniel Zeichner MP (Cambridge) and answered by Rt Hon Andrew Stephenson MP (Pendle) as Minister of State in the Department of Health and Social Care.

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that funding for biomedical research into myalgic encephalomyelitis (ME) is adequate; and whether he plans to take steps to establish a centre of excellence on ME to (a) promote understanding of and (b) develop effective treatments for that illness.

In response

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided around £4.4 million of programme funding for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011.

Through the NIHR, the Department has co-funded, with the Medical Research Council (MRC) a £3.2 million study called DecodeME into the genetic underpinning of ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease and therefore contribute to the research base on diagnostic tests and targeted treatments for ME/CFS.

The Department and the NIHR has no specific plans to establish a centre of excellence for ME research. The NIHR welcomes funding applications for research into any aspect of human health, including biomedical research for ME/CFS. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

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