On May 6, 2025, the UK’s Department of Health and Social Care (DHSC) unveiled a new delivery plan for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), outlining a framework for improving care, education, and consistency across the NHS.
For patients long underserved by the system, this plan promises change—but for many healthcare professionals, it raises concerns about delivery, evidence, and clarity.
What the Plan Promises
GP-Led Care for Mild to Moderate ME/CFS
- A template service specification for managing ME/CFS is in development by NHS England.
- It will align with 2021 NICE guidelines, which discourage outdated practices such as graded exercise therapy (GET) and overly simplistic CBT-based treatment pathways.
- Care will be delivered through the new neighbourhood health service, bringing it closer to home.
Specialised Services for Severe ME/CFS
- Early discussions are underway about creating a nationally prescribed specialist service for patients with very severe ME/CFS.
- This would depend on clinical guidance and funding availability.
New Training and Education Initiatives
- NHS England has rolled out e-learning modules based on updated evidence.
- A “Language Matters” guide is being co-produced by professionals and those with lived experience.
- A review is ongoing to ensure ME/CFS is better integrated into undergraduate and postgraduate training.
The Scale of the Challenge
A recent revised estimate places the number of people affected by ME/CFS in England at 404,000—up from 250,000. Despite this, patients still face:
- Long diagnostic delays—sometimes more than a decade
- Dismissive attitudes in primary care
- Limited specialist referral pathways
- Frustration with the lack of effective treatment options
The NHS acknowledges these issues and ties the new plan to broader goals of its 10-Year Health Plan, aiming to reduce stigma, standardise care, and enhance professional awareness.
Clinician Reactions: Mixed and Divided
In response to the announcement, some GPs and clinicians expressed hope for more structured support and patient-centered care. Others voiced concerns over:
Lack of Treatment Options
“If there’s no medical treatment to offer, the involvement of GPs in a non-evidence-based, non-medical treatment pathway is an opportunity cost.”
Concerns Over Delivery
“It’s rather concerning that this is to be delivered via the ‘neighbourhood health service’ rather than clearly through GPs. Where are the specialist services?”
Scepticism About Clinical Basis
“CFS, fibromyalgia, and PTSD are overlapping, often linked to neuro-inflammation and immune dysregulation. They are genuine medical diseases—not just social or emotional distress.”
Caution Against Over-Medicalisation
“We all need to be aware of patients’ life experiences, but applying a narrow medical model to every symptom can lead to inappropriate prescribing and more harm.”
These debates highlight the tension between compassionate care, medical uncertainty, and resource constraints.
The NICE Guideline Controversy
The 2021 NICE guideline removed graded exercise therapy (GET) and significantly revised recommendations around CBT. While these changes were celebrated by patient advocacy groups, some clinicians and researchers continue to challenge them, citing a lack of evidence for alternative interventions.
A 2023 paper argued that the guidelines were “not evidence-based”, further fuelling debate over the best way to manage and support ME/CFS patients.
What Happens Next?
NHS England’s plan will move forward with:
- Stakeholder input through a health services subgroup of the ME/CFS Task and Finish Group
- Further consultation with integrated care boards (ICBs)
- Continued development of education, language, and service specifications
But questions remain:
- How will GPs manage increased demand with no approved treatments?
- Where are the referral pathways for complex or severe cases?
- What protections are in place against over-investigation and overprescribing?
FAQs
What is ME/CFS?
A complex, chronic condition involving extreme fatigue, post-exertional malaise, pain, cognitive dysfunction, and more. Its cause remains unclear, and there is no definitive cure.
What changed in the 2021 NICE guidelines?
They removed recommendations for GET and cautioned against using CBT as a treatment. Emphasis is now on pacing, symptom management, and supportive care.
Is ME/CFS linked to Long COVID?
Research suggests overlaps in symptoms and mechanisms—such as immune dysfunction and neuroinflammation—but more studies are needed.
