FOI release

FOI2023/00245: MRC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Funding

This request was refused in part, so we didn't provide some of the information the requester asked for. This may include information where we can neither confirm nor deny that we hold it.

Case reference FOI2023/00245

Published 14 July 2023

Request

Request Received: 2 May 2023

The MRC has supported ME/CFS research through a cross-board highlight notice since 2003. UKRI provides on its website data about funded research projects from 2004-2017: https://www.ukri.org/publications/mrc-chronic-fatigue-syndrome-research-projects-2004-to-2017/

I am kindly requesting that you provide:

(i) updated data on funded projects in this area covering the period 2004-present (May 2023), preferably by sharing an updated version of the XLSX spreadsheet linked above.

(ii) information on unfunded/rejected proposals in this area for the same period (2004-present), to include statistics on the number of rejected proposals each year, and any available information on individual rejected proposals.

Data/information on funded and unfunded/rejected proposals should include all funding types-i.e., fellowships, grants, and other funding that doesn't fit into either category.

The MRC's ME/CFS highlight notice (https://www.ukri.org/opportunity/researching-me-cfs-highlight-notice/) was recently updated to include information on the ME/CFS Priority Setting Partnership (ME/CFS PSP) themes. Therefore, I am also requesting [(iii)] any information and documents pertinent to this update-such as external correspondence with PSP stakeholders and internal documents/correspondence relating to the ME/CFS PSP and MRC's strategy and outlook on ME/CFS funding-since the priority themes were published online in May 2022.

Clarification Received: 1 June 2023

I would like you to proceed with the first part of my request-i.e., parts (i) and (ii)-as this information should be relatively easy and quick to extract and summarize. A suitable spreadsheet already exists for (i) and simply needs updating. For (ii), a spreadsheet, in the manner of (i), of unfunded/rejected proposals will suffice, and the addition documents for (ii) can be limited to proposal/project summaries.

With regards to the second part of my request, a key word search for "highlight notice" will return results that aren't within scope, because there are other MRC highlight notices (such as for motor neuron disease). Therefore, I would like MRC to conduct a keyword search for "ME/CFS highlight notice" and to reevaluate the amount of information returned.

If the information returned still exceeds the statutory limits, I am happy to restrict the scope of this request to meeting minutes and documents where the MRC's strategy on ME/CFS and/or the ME/CFS highlight notice is discussed (from May 2022 to present).

Response

Response Sent: 29 June 2023

Response Updated: 14 July 2023

Full details of this response are provided in the attached documents.

Documents

• FOI2023 00245 Email Correspondence_Redacted.pdf (1.2 MB)
• FOI2023 00245 Highlight Notice References Extracted_Redacted.pdf (106.9 KB)
• FOI2023 00245 MECFS Applications Summary 2002-03 to May 2023.pdf (380.9 KB)
• FOI_Response_Letter_FOI2023_00245_Redacted.pdf (317.8 KB)
• Funding Opportunity - ME CFS Highlight notice update Jan 2023.pdf (208.6 KB)
• ME CFS Strategy page update 2023.pdf (152.7 KB)
• MRC-291121-CFSMEResearchProjectsFrom2004To201617k - 2017 to 2023.xlsx (17.2 KB)
• PSMB March 2023 - ME-CFS update.pdf (136.1 KB)

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