Scottish Government set to make first ever funding commitment for ME after 22 year wait 

CAMPAIGNERS have welcomed the end of a 22 year wait for action as the Scottish Government is set to make its first ever funding commitment for ME.

The Scottish Government’s budget for 2025-2026 has outlined an “additional £4.5m funding to deliver new specialist support across the country for new services for Long Covid, ME, Chronic Fatigue and other similar conditions”.   

The revelation of the pledge – which was overshadowed by other announcements made in the Budget – has come after a long battle by the ME (myalgic encephalomyelitis) community to press for change, since the chief medical officer published a report in 2002 recommending the development of services for people with ME. 

The ??campaign for support for people with ME in Scotland has gathered pace since Covid-19, with evidence suggesting that around 50% of people with Long Covid have ME.

A conservative estimate is that the number of people with ME has increased at least threefold since Covid, to an estimated 58,000 people.  

#MEAction Scotland, a volunteer-led group that has been campaigning for services and support for people with ME since 2017, welcomed the news. 

Janet Sylvester, spokesperson for #MEAction Scotland said:  “This is a landmark day for our charity – and for the thousands of people who live with ME. 

“After years of campaigning and lobbying for change, the Scottish Government has finally included funding for ME services.  

“People with ME have a huge struggle to get the support they need, often facing stigma and disbelief from health professionals who hold outdated views on ME.

“There is only one specialist service in Scotland and no ME consultants or specialist nurses.” 

The news comes just two weeks after the publication of an updated Health Board survey report on ME service in Scotland.

Based on findings from all 14 NHS boards, the report covers current service provision for ME and the extent to which Boards are implementing the 2021 NICE (National Institute for Health and Care Excellece) guideline on ME/CFS.

The report confirmed that there is only one specialist service for the 58,000 people with ME in Scotland.

Whilst the Boards said they were willing to develop support, they highlighted the challenges posed by “resource constraints, outdated views on ME/CFS and coping with legacy waiting lists.” 

It is nearly three years since the Scottish Government committed to implementing the 2021 NICE guideline on ME/CFS.

Despite this commitment, the health board survey highlights that, although Health boards are aware of the new guideline, there are significant barriers to its implementation.  

Janet said #MEAction Scotland believes it is critical that funding should only be given to services that commit to implementing the NICE guideline recommendations. 

She added: “ME patients in Scotland are continuing to be treated according to an outdated model of ME.

“Until the latest NICE guideline is effectively implemented, they will continue to be offered treatments that are no longer recommended and are potentially harmful.  

“We urge the Scottish Government to fulfill its commitment to implement the NICE guideline urgently in order to prevent further harm to patients.”