Following the Scottish Government's allocation of the £4.5 million of funding for Long Covid, ME and similar conditions, Health Boards were requested to submit proposals outlining how they intended to spend their individual awards. #MEAction Scotland has now had a chance to read through all the proposals and produce a summary.

While there are one or two potentially promising proposals, most bids lack the medical leadership and clinical understanding needed to provide safe and effective care. Despite the lack of staff trained in ME care, most proposals fail to address the need for education and training, without which it will be hard to build services that can support people with ME effectively. Most worryingly of all, those with severe/very severe ME, and children and young people continue to be largely overlooked.

All of the proposals submitted by the Health Boards can be viewed at the link at the end of this article 

Proposed  Regional Centres

NHS Highland’s proposal stands out from all the other submissions – it is the only Board planning to establish a medically-led service, a one stop multidisciplinary team headed by a GP or a physician with a ‘special interest’. We are really encouraged by this. If Highland can deliver as proposed, it will set a new bar for ME service delivery across Scotland. In addition, two areas - South East Scotland (Lothian, Borders, Fife and Forth Valley) and the North of Scotland (essentially the NHS Highland proposal with input from Orkney and Shetland) - are proposing regional centres designed to build expertise. This is an encouraging development and although the current proposal for SE Scotland is very basic, it has the potential to be used to develop expertise in the workforce.

Reliance on Long Covid Services

Boards need to be developing the skills needed to manage ME (including its overlap with Long Covid). Many bids are based on Boards’ experience of Long Covid services, resulting in proposals that are too generic and do not recognise the specific needs of people with ME.

Lack of Medical Input

A lack of medical input is one of the biggest weaknesses across most bids. Doctors are needed not only to prescribe and manage medications, but also to coordinate complex cases, understand multi-system illness, and liaise with other specialists. Without medical oversight, services risk defaulting to inappropriate models that fail to address the biological and clinical realities of ME.

Widening of Criteria for Inclusion

Several Boards have expanded their proposals beyond the funding criteria, attempting to include all long-term or energy-limiting conditions. While integration can sound positive, this risks watering down services and overlooking the distinct needs of people with ME which requires specialist medical knowledge and careful pacing-based management.

Inclusion of Comorbidities

Most Boards have not addressed common comorbidities like PoTS (Postural Orthostatic Tachycardia Syndrome) and MCAS (Mast Cell Activation Syndrome) — despite their high prevalence among people with ME. Services must recognise and respond to this complexity to avoid leaving patients without the care they need.

Inclusion of People with Lived Experience

Involvement of those with lived experience also varies widely, with some Boards working collaboratively with patient groups and others not at all.  People with ME have decades of lived expertise. Their insight must shape every stage of service design, delivery, and evaluation. Anything less fails the communities these services are meant to serve.

Inappropriate Outcome Measures

Too many proposed outcome measures are designed for other conditions and just not a good fit for ME, especially those measuring mood and anxiety. They almost all fail to ask about the consequences of doing an activity. Only NHS Highland includes a PEM (Post-Exertional Malaise) screening questionnaire — a critical inclusion. 

FUNCAP does not ask whether the patient “can” do an activity or how often, but asks how performing an activity Future services should adopt modern outcome measures which have been designed for and tested by people with ME such as the FunCap questionnaire, which assesses real-world functional capacity and the ability to perform other activities, whether that be vacuuming the floor or just a 5-minute conversation.

Concerns about Rehabilitation and Recovery Terminology

Many of the bids use the terms ‘rehabilitation’ or ‘recovery’ when talking about the service model they are proposing. While #MEAction Scotland recognises that the use of words like ‘rehabilitation’ is likely to refer to the concept of providing support and appropriate interventions to help people with a long-term condition live as well as possible, we also recognise that this term is deeply problematic for people with ME. Given the historical use of this type of language and its implications of improvement through graded activity, it is entirely understandable that people with ME react adversely when they encounter it. Indeed, the Scottish Government admits in its own rehabilitation and recovery report that ‘Rehabilitation means different things to different people’. As already mentioned, many of the bids are based on existing Long Covid services which may explain the use of the word ‘recovery’ in some of them. ‘Recovery’ is, if anything, even more problematic for people with ME as recovery is extremely rare in ME. It would be helpful in this context to move towards care models which instead focus on energy impairment, pacing and post-exertional symptom exacerbation.

Conclusion

There is clear potential for progress — especially where Boards are listening to people with ME and involving medical professionals who understand this condition. But right now, too many proposals still fall short of what people with ME need and deserve.

Next Steps

Earlier this month, #MEAction volunteers met with members of the Scottish Government’s Clinical Priorities policy staff to raise key issues and concerns that we have with the proposals.

#MEAction Scotland is drawing up a list of questions to send to MSPs to ask their local Health Boards. We’re also planning to contact specific Health Boards directly to ask to be involved in consultations and make sure the voices of those with lived experience of ME are heard. As always, we will keep you updated with any new developments.

Click the button below to see the proposals submitted by the Health Boards.