What is Myalgic Encephalomyelitis?   

The NHS explains that Myalgic encephalomyelitis, also called chronic fatigue syndrome (or ME/CFS), is a long-term condition that can affect different parts of the body. The cause of ME/CFS is unknown. ME/CFS can affect anyone. 

The 4 main symptoms of ME/CFS are: 

  • feeling extremely tired all the time (fatigue) 
  • sleep problems 
  • problems with thinking, concentration and memory (brain fog) 
  • symptoms getting worse after physical or mental activity, and possibly taking weeks to get better    

There is no specific diagnosis test for ME/CFS. It is diagnosed by symptoms and by ruling out other conditions. It can take a while to diagnose ME/CFS.  

Treatment 

There is currently no cure for ME/CFS. Treatments include  

  • advice about how to make best use of the energy a person have without making their symptoms worse  
  • medicine to control symptoms such as pain and sleeping problems 

The NHS webpage on Treatment for ME/CFS has further details. 

In October 2021, the National Institute for Health and Care Excellence (NICE) published guidelines for the diagnosis and management of ME/Chronic fatigue syndrome.  

Prevalence of ME  

According to a recent study, people with ME/CFS “report lengthy diagnostic delays and prevalence estimates vary greatly due to uneven diagnosis and misdiagnosis”. 

The study estimated there are around 404,000 people with ME in the UK. White British people were more likely to be diagnosed with ME compared to Asian and Black British people. Lifetime prevalence was found to be 0.92% in women and 0.25% in men.  

For a brief discussion of the study, see this short press release from the University of Edinburgh. 

UK government activity – Delivery plan on ME/CFS 

In December 2024, the Department of Health and Social Care along with the Department for Education and Department for Work and Pensions published an interim cross-government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  

 In July 2025, the final delivery plan on ME/CFS was published. The plan focuses on 3 areas where the government says it is seeking to improve care and support for those with ME/CFS: 

Research 

New research investments announced in the plan include: 

  • £845,000 for a Medical Research Council funded partnership award (called Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis (PRIME)) to build infrastructure to enable ME/CFS biomedical research. 
  • A £1.4 million National Institute for Health and Care Research programme (called the HERITAGE study) to explore the cost-effectiveness of existing healthcare for ME/CFS and for long COVID, to improve quality of care. 

Attitudes and education 

The plan aims to increase knowledge of ME/CFS for healthcare professionals and for the public through: 

  • E-learning modules on ME/CFS for staff 
  • a public awareness initiative led by the Department of Health and Social Care 

Living with ME/CFS 

There are various initiatives in the plan to improve health services for people with ME/CFS, including: 

  • NHS England will develop a template service specification for mild and moderate ME/CFS 
  • DHSC and NHS England will explore if there should be a specialised service for very severe ME/CFS  

Measures relating to welfare and employment support (most of which are not aimed exclusively at people with ME/CFS, but at disabled people and people with health conditions more broadly) include: 

  • Initiatives aimed at ensuring 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, that the right decisions are made the first time, and that support is provided where needed throughout the application process. 
  • Detailed proposals to reform the system of health and disability benefits, and to improve benefits assessment processes, set out in the March 2025 green paper Pathways to Work: Reforming Benefits and Support to Get Britain Working. The government has already legislated to “rebalance” support in Universal Credit (UC), which will see the additional health element cut for new claimants from April 2026, alongside above-inflation increases in the standard allowance for all UC claimants. The government also intended to make controversial changes to the eligibility criteria for Personal Independence Payment (PIP), but these were abandoned. The government now says it will only make changes to PIP eligibility rules following a review being led by the Minister for Social Security and Disability, Sir Stephen Timms. The Timms review of PIP is being  ‘co-produced’ with disabled people, the organisations that represent them, clinicians, experts, MPs, and other stakeholders, and is expected to conclude by Autumn 2026. The government has yet to announce details of how it intends to proceed with other linked reforms announced in the green paper, including abolishing the Work Capability Assessment from 2028/29. The government’s green paper consultation response published in October 2025 noted: “we will share details of our proposals in due course.” 
  • An additional £1 billion a year to provide a new “pathways to work offer” for disabled people and people with health conditions, including those with fluctuating chronic illnesses such as ME/CFS. This will bring together both current and new interventions to establish a guaranteed offer of tailored, one-to-one help alongside access to appropriate employment, health and skills support. 
  • Consulting on the future of the Access to Work scheme. Chapter 4 of the Pathways to Work green paper outlined some of the ways the government thought the scheme could be changed. 

Stakeholder commentary on the government’s delivery plan  

The charity Action for ME has welcomed the plan as “an important step towards recognising the scale and seriousness of the condition” but has said the plan “does not go far enough” and that it “lacks a strategic approach to research investment, ambition, and accountability structures”. 

Similarly, the charity The ME Association has called for a “more ambitious long term research strategy linked to dedicated funding”. It has critiqued various aspects of the plan, including: 

  • a lack of a clear strategy to consistently implement NICE guideline recommendations across the country, which is says could lead to “a postcode lottery in diagnosis and access to specialist care” 
  • a lack of focus in the plan on severe and very severe ME 
  • a lack of funding for long covid clinics 

Further reading

Parliamentary Questions

Chronic Fatigue Syndrome: Research (5 November 2025)

Chronic Fatigue Syndrome and Long Covid: Training (5 November 2025)

Chronic Fatigue Syndrome: Health Services (5 November 2025)

Press material

Earlier diagnosis and better care needed for ME and Long COVID patients, report finds (University of Exeter News, 3 April 2025)

I have ME. Here’s what I wish people knew about living with it (The Independent, 22 July 2025)

Doctors to be trained on ME in NHS plan to transform care (The Times, 22 July 2025)

Bedfordshire woman with ME criticises health plan for condition (BBC News, 28 July 2025)

Government plan to train doctors on ME/CFS “does not go far enough,” campaigners say (The BMJ, 28 July 2025)

Stakeholder comment

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan (22 July 2025)

The ME Association’s statement on the Government’s Delivery Plan on ME/CFS – The ME Association (22 July 2025)

DHSC publishes the Final Delivery Plan on ME/CFS – Action for ME (22 July 2025)

Related posts