Severe ME was at the centre of a major ME Foggy Dog 2024-25 advocacy effort when 5,220 people with M.E signed an open letter demanding an NHS protocol. It was one of the largest collective actions from the M.E community in recent years (it’s very hard to reach people within our community – thanks to the nature of the disease itself, and algorithms!), and it represented a clear, unified message:
Severe M.E patients are being harmed, neglected, and left without safe, appropriate care. We need an NHS protocol.
Our open letter laid out exactly why urgent action was necessary. Severe M.E is a complex neuro‑immune disease that can leave people unable to sit upright, unable to eat without triggering symptoms, unable to speak, and in some cases, unable to survive without meticulous, informed care. Patients have died from malnutrition due to neglect and misunderstanding. Clinicians who do understand the disease risk referral to the GMC simply for trying to help.
And yet, despite all this, in 2026, there is still no NHS protocol for severe M.E.
What happened after the letter?
To be blunt: Nothing meaningful.
We received a generic response, from staff of each of the Secretary of State for Health and Social Care between early 2024 and late 2025, the kind many M.E advocates know all too well (paraphrasing) “The ME/CFS Delivery Plan and NICE guideline update will fix most of these problems.”
They haven’t., in fact they never could have as they simply do not go far enough.
The Delivery Plan – no comment. The NICE guidelines, while improved, do not address the realities of severe M.E. To be clear, the people who signed that letter, many of them in the same condition they were in back in 2024-25, continue to face the same barriers, the same risks, and the same lack of safe care.
Nothing resulted from the ‘next steps’ bit either, in which people living with M.E. contacted their local regional health board to highlight the campaign and the need for a protocol.
The truth is, the campaign took a toll on me personally. Pushing for change in a system that moves slowly, and sometimes not at all, is draining. As a person with M.E, social entrepreneur, and M.E campaigner, I needed to step back, breathe, and regroup.
But now, with politics settling (for the moment at least), I’m ready to get back to it. There has been far too much political disruption over the past few years but it might, just might, be starting to calm down a bit. Fingers crossed!
Severe M.E patients cannot wait another year, another election cycle, or another “plan” that doesn’t address their reality.
The open letter spelled out what is still urgently needed:
- Specialised Care Pathways: Develop clear and standardised care pathways for individuals with severe M.E., ensuring access to specialist consultations, symptom management, palliative-style care, and home-based support services.
- Education and Training: Provide comprehensive training for healthcare professionals to increase awareness and understanding of severe M.E., enabling them to deliver appropriate and empathetic care to patients.
- Research and Innovation: Allocate resources for research into the underlying mechanisms of M.E. and the development of effective treatments, with a focus on addressing the needs of individuals with severe forms of the illness.
- Patient Involvement: Ensure meaningful involvement of individuals with severe M.E., as well as their caregivers and advocacy groups, in the design and implementation of the protocol to ensure it reflects their needs and preferences.
This isn’t a niche issue, it’s a moral imperative that impacts 25% of our community. In the UK in 2026, that equates to AT LEAST 100,000 people.
The M.E community has always been resilient, often because it has no choice. But resilience doesn’t mean silence, and it certainly doesn’t mean giving up completely
So here we are: Rested, re‑energised, and ready to push again.
If you want to read the full open letter or revisit the campaign, you can find it here: https://www.mefoggydog.org/nhs-protocol-campaign/ (open letter now closed).
Sally
and Foggy (OBVIOUSLY)