In Scotland, the primary source of information and guidance from ME/CFS was previously in the Scottish Good Practice Statement on ME/CFS which mirrored but did not tract exactly the various NICE guidelines on ME/CFS which have been issued over time. Since the 2021 NICE guideline was introduced, the Scottish Good Practice Statement on ME/CFS was updated in a piecemeal fashion with promises of an overhaul. By 2023, ad hoc changes brought guidance in Scotland broadly into line with that of England when considering diagnosis and inserted updates into the text for other issues such as CBT and GET but was not a total re-write for the Scottish context. The remainder of the Statement required to be overhauled to reflect the passage of time from 2010 when the basic text was written; new research; and greater understanding of the disease and expectations on healthcare professionals to serve the needs of their patients. The updating was further delayed by the Delivery Plan process which became a useful excuse to park work on the Statement – specifically to take into account specific Scottish issues – such as the lack of specialist care services. NICE’s writ does not run in Scotland automatically.
It will be remembered that a 2024 Report querying delivery of ME/CFS services in Scotland, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development concluded that
Survey responses highlighted that provision for ME/CFS varies greatly across Scotland and ranges from generalist to specialist support by staff trained in ME/CFS. Only two NHS Boards have a specific specialist ME/CFS pathway for patients in their area and, at the time of this survey, only one of these pathways was active. Most NHS Boards agreed there are potential synergies between a specialist ME/CFS service and pathways for other long-term conditions.
Perhaps adopting NICE will aid delivery of promised funding for ME/CFS. The draft Scottish Budget for 2025/26 delivered by Shona Robison MSP, Scotland’s Finance Secretary to Holyrood on 4th December contained a commitment for an ‘additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions.’
Notification of the Scottish Government’s decision to withdraw the Scottish Good Practice Statement on ME/CFS
I write to you today to advise that the Scottish Government’s has withdrawn the Scottish Good Practice Statement (SGPS) on ME/CFS as of 28 May 2025
As you know, the SGPS was originally published in 2010 and intended to support the diagnosis and management of ME/CFS in primary care. For several years the SGPS coexisted with the NICE Guideline NG206: ME/CFS Diagnosis and Management. The SGPS was partially revised in 2023, to reflect some of the key recommendations from the NICE guideline.
We took this approach due to the expected lengthy timescales involved in convening a full SGPS update and to avoid another protracted review process taking place so soon after the extensive NICE evidence review. However, aspects of the document remained outdated and so the decision has been made to withdraw the SGPS, leaving NICE Guideline NG206 as the default clinical guidance on ME/CFS.
The withdrawal of the document has been communicated to all of NHS Scotland’s territorial Health Boards, NHS Education Scotland and Healthcare Improvement Scotland, and to relevant Royal Colleges and professional clinical bodies.
