Welcoming Progress on ME/CFS – But Questions Remain

The UK Government’s recently announced Delivery Plan for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long overdue step in the right direction. From speaking with my Constituents, I understand that many ME/CFS patients have had negative experiences with the welfare system - left feeling let-down, ignored or disbelieved. While I am pleased that the plan recognises ME/CFS as a disability, and while I am comforted by its recognition of the tireless work of unpaid carers, I am concerned that the plan does not commit to, or give clarity on, the support that will be made available to applicants or their carers - many of whom struggle with the demands application and assessment process.

While the intentions behind the plan are positive, there are still some critical questions that remain unanswered. One of the biggest concerns for me is accountability. Who is responsible for overseeing the implementation of this plan? Who will hold decision-makers to account if progress stalls or actions fall short? Without clear oversight, there’s a real risk that this plan could end up being little more than a well-meaning document that delivers no real change.

There’s also no clarity on where the funding to deliver the ambitions set out in the plan will come from. To make a meaningful difference, real investment in research, care pathways, education and support is required. It’s simply not enough to say the delivery plan ‘aims to ensure that people with ME/CFS and their unpaid carers have a full understanding’ of how to access the benefits system and of the claims process’ and that ‘support is provided where needed throughout the application process’, we need specifics on what this support will be and how to access it.

I also have serious reservations about the approach to training. While it’s important that all healthcare professionals are able to recognise ME/CFS, that alone is not enough. We still need properly trained specialists who understand the condition in depth and can provide expert care. General awareness is vital – but so is specialist support for those living with a complex and often debilitating illness.

While the plan has been developed at a UK-wide level, health is a devolved issue which is why I’ve written to the Scottish Government to ask whether they intend to adopt this plan, or whether they will bring forward a Scotland-specific version that reflects the needs of patients in North East Fife and Leven as well as across Scotland. We need consistency, but also recognition of the unique aspects of devolved health services.

This delivery plan is a start, but we must make sure it isn’t the end of the conversation. People living with ME/CFS deserve better, and I will continue to press both the UK and Scottish Governments to turn words into meaningful action.