Last December, the Scottish Government included in it's budget for 2025/6 an allocation within the NHS Scotland funding “For those suffering from Long Covid, additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions.”
While that announcement was made by Cabinet Secretary for Finance & Local Government, Shona Robison, this announcement came from the Cabinet Secretary for Health and Social Care, Neil Gray, on 25 September. He said during a visit to Lothian Health Board's Astley Ainslie Hospital in Edinburgh:
I recognise the significant impact which the symptoms of long COVID and ME/CFS can have on those most severely affected. I want to ensure these patients are listened to and receive appropriate assessments and referrals.
Being able to meet professionals involved in Astley Ainslie Hospital’s existing long COVID service, I am heartened to hear first-hand how our funding so far has allowed people living with the condition to be given advice and support to improve their quality of life.Recurring funding will enable health boards to develop new support on a sustainable basis and help the retention and recruitment of the skilled members of staff required for the delivery of these services.
…which suggests we are little or no further forward in developing the most effective form and provision of suitable services.
Approximately 3 times as many post-COVID ME/CFS cases than pre-existing ME/CFS cases
Two weeks ago, Scottish Government published their Population Health statistics report “Investigating the prevalence of long COVID in Scotland”, which cites a Long COVID prevalence of over 3%, compared to the recent DecodeME paper's prevalence figure for ME/CFS across the UK of 404,000, meaning approx 0.6% of the Scottish population.
Based on 2024 population figures, these figures suggest 33,000 ME/CFS cases and 83,000 LC~CFS cases, so something over 110,000 cases to be served by this funding, so approx £40 per case per annum (though Long Covid Scotland's analysis suggests a net figure of under £8 per case per annum).
The Situation
All indications in Scottish Government health policy are for concentration on what support services provided by Allied Health Professionals (mainly in Primary Care Services) can provide on a time-limited basis. While informed Allied Health Professional's (AHPs) can be very helpful for some and notionally most patients, there remain lots more issues that such approaches fail to address.
Importantly, we see few effective current initiatives for usefully improving general standards of practice across doctors in particular, and all health and social care practitioners, especially for early recognition and diagnosis, and for delivering effective support in management and symptom alleviation treatment for the severely and very severely affected patients and their carers.
And we still see a lack of engagement from Under and Post-Graduate Medical Courses from University Medical Schools and NHS Education Scotland.
A further year's funding to the Learn About ME project led by Action for ME in conjunction with the ME Association and #MEAction Scotland has just been confirmed, and is welcome, but, while this project has had success which it will continue building on, there has not been adequate support of this resource from within NHS service structures to achieve the potential level of service improvement the project offers.
Scottish Long Covid charities push for action
Last year, Scottish Government announced a funding extension for their Strategic Network for the Long-Term Effects of COVID-19, and invited Long Covid Scotland and Long Covid Kids Scotland to participate in a further phase of their project.
On 5 August 2025, Long Covid Scotland and Long Covid Kids—the two leading patient-led charities representing thousands of people in Scotland living with Long Covid—resigned from the Scottish Government’s Strategic Network for the Long-Term Effects of COVID-19.
This decision followed over a year of “repeated and constructive warnings to the NHS National Services Scotland (NSS) regarding network failure, broken trust, and collapse of policy delivery. These warnings highlighted governance breakdowns, exclusion of lived experience voices, lack of transparency, and delivery delays stretching years beyond stated commitments.“
The two charities have written to Holyrood’s Health, Social Care and Sport Committee requesting they investigate the circumstances and activities of this initiative and the various health policy bodies responsible for informing and delivering effective policy which it was supposed to encompass. The committee has since written to the Minister.
This funding re-announcement appears to be an attempt to partly respond to the first point the Committee has been asked to investigate and:
- 1. Seek immediate written evidence from the Scottish Government and NSS detailing including:
- Governance arrangements, decision-making processes, and strategic oversight of the Long Covid Strategic Network.
- All milestones, spending plans, and delivery timelines linked to the £4.5m Long Covid Support Fund, including explanations for the current delay and safeguards for allocated funds. …
Please see Long Covid Scotland blog link in previous section to read more.
Further Information
- The ME Association: Scotland: Two Leading Long Covid Charities Resign from Strategic Long Covid Network | August 5, 2025
- Action for ME, ME Association & MEAction Scot: Further funding announced for Learn about ME | September 25, 2025
- The ME Association: Prevalence: Latest research suggests a 62% increase on historic estimates for ME/CFS in the UK | July 4, 2025
- Research: Unequal access to diagnosis of myalgic encephalomyelitis in England: Gemma Louise Samms & Chris P. Ponting : BMC Public Health volume 25, Article number: 1417 (2025) | April 25, 2025
- Research: Typing myalgic encephalomyelitis by infection at onset: a DecodeME study: Bretherick et al. NIHR Open Res. 2023;3:20. | August, 2023