On 30th July 2025 Jackie Baillie MSP (at the behest of ME Research UK) tabled 3 questions of interest to the ME community which have now been answered by Jenni Minto MSP as Minister for Public Health and Women’s Health. The questions being –
- To ask the Scottish Government what practical and financial steps it will take to stimulate myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. (S6W-39661)
- To ask the Scottish Government how it will implement and fund the devolved elements of the delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (S6W-39659)
- To ask the Scottish Government what plans it has to ensure that NICE-compliant specialist services for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are introduced by NHS boards, and that these services comply with the principles contained in the delivery plan for ME/CFS to ensure that people in Scotland with the condition do not receive inadequate care compared with those in England. (S6W-39660)
On the research specific query, it would appear that nothing specific is actually being done or planned to be done. In fact, no light was shed on the areas queried. As Ms Minto responded
The Scottish Government’s Chief Scientist Office (CSO) funded with other health research organisations the James Lind Alliance Priority Setting Partnership that has published priorities for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. In addition, CSO with other research funders have developed a toolkit for researchers to guide them on funding streams that provide opportunities for ME/CFS research. These streams include CSO’s open competitive grant and fellowship schemes that fund applied health research across a wide remit, inclusive of ME/CFS research as well as National Institute for Health and Care Research (NIHR) programmes that can also fund ME/CFS research in Scotland with CSO’s financial contribution to NIHR opening these programmes to applications from researchers in Scotland. Applications submitted to these schemes are assessed through independent expert peer-review with funding recommendations made by independent expert committees.
Note that the question was what steps WILL the Scottish Government take not what it HAS done (and at that only under cover of others). Merely narrating what research support is available to all within the CSO’s remit does not answer what it will do for ME/CFS.
On the second question, the answer appears at odds with the comments surrounding the Delivery Plan namely that the Ministerial Foreward stated “This final delivery plan covers the population of England. However, I know that the Scottish Government, the Welsh Government and the Northern Ireland Executive have all carefully considered the consultation responses on the interim delivery plan from their residents and what they have heard at the Task and Finish Group meetings, and the implications for local policy in the devolved nations.” When the consultation results of the Interim Delivery Plan were known it was stated that ” … the Scottish Government is keen to understand the views of stakeholders in Scotland on aspects where there might be the potential to consider any common approaches or relevant actions within a Scottish context”
It is also key to remember that the Plan is not confined to health but also covers education, and awareness raising amongst other areas – other devolved areas. It is also rather brave to mention the £4.5m earmarked to deliver new specialist support across the country for long COVID, ME/CFS and other similar conditions given that two long COVID charities have resigned from the Long Covid Strategic Network citing lack of concrete progress in allocating the funds.
The Ministerial answer states
There are no devolved elements of the UK Government’s delivery plan on ME/CFS. It covers the population of England only.
We are unable to formally endorse the Plan due to differing healthcare systems and statutory structures.
However, the 2025-26 Scottish Budget includes an additional £4.5 million to deliver new specialist support across the country for long COVID, ME/CFS and other similar conditions. We want this money to have maximum impact and we are working closely and carefully with health boards across Scotland to allocate it as quickly and effectively as possible.
The provision of healthcare services is the responsibility of NHS health boards. In commissioning boards’ plans for this funding we have stressed the importance of ensuring that services are informed by current clinical best practice, such as National Institute for Excellence in Healthcare (NICE) guidelines NG:206 and NG:188– which are available to clinicians across the UK – and that care is delivered in line with the relevant recommendations, wherever applicable.
The same answer was given for question three. It is worrying that no comment on how the Scottish Government will ensure that such servces which may exist in Scotland are NICE compliant, on funding, nor even that any improvements in England due to the Delivery Plan will be mirrored in Scotland. It would appear that the Scottish Govermnet is content to allow matters to drift and has neither plan nor interest.
