Myalgic encephalomyelitis (ME): An overview

Approximate read time: 15 minutes

On 18 June 2026, the House of Lords is scheduled to consider the following question for short debate:

Baroness Scott of Needham Market (Liberal Democrat) to ask His Majesty’s government what is their policy towards the (1) treatment of, and (2) research into, severe myalgic encephalomyelitis.

1. What is myalgic encephalomyelitis?

1.1 Symptoms

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (ME/CFS), is a long-term condition that can affect different parts of the body. The NHS has said that the four main symptoms of ME/CFS are:

• feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
• sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
• problems with thinking, concentration and memory (brain fog)
• symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise (PEM))^[1]

Other symptoms include pain in different parts of the body and flu-like symptoms, such as high temperature, headache and aching joints or muscles.^[2]

The charity Action for ME has explained that while there are key symptoms which must be present for a diagnosis, “not everyone with ME experiences the same set of symptoms and the illness can vary enormously, including how long symptoms last”.^[3] In 2021, the National Institute for Health and Care Excellence (NICE) published guidelines for the diagnosis and management of ME/CFS.^[4] This set out the definitions for mild, moderate, severe and very severe ME, and provided a guide to the level of impact symptoms have on everyday functioning.

1.2 Prevalence

ME can affect anyone, including children, although some groups are more likely to be diagnosed than others.^[5] Research from the University of Edinburgh in 2025 estimated that 404,000 people in the UK have ME (0.6% of the population).^[6] It found that women were more likely to be affected: they were diagnosed two to five times more often than men and tended to report more severe symptoms. Diagnoses were also found to vary by ethnicity, with white people almost five times more likely to be diagnosed than those from other ethnic groups.

However, the study highlighted that there is no specific diagnostic test for ME.^[7] Instead, it is diagnosed by symptoms and ruling out other conditions. The study found that this causes lengthy diagnostic delays and affects prevalence estimates, which vary due to uneven diagnosis and misdiagnosis.

1.3 Impact

The NHS has said that living with ME can be difficult, with extreme tiredness and other symptoms making it hard to carry out everyday activities.^[8] It can require patients to make major lifestyle changes. It can also impact mental and emotional health and have a negative impact on a patient’s self-esteem. It has been reported that one in four people with ME are so severely affected that they are house or bedbound.^[9] In addition, ME has been found to have a negative impact on family members and partners of those diagnosed.^[10] Individuals reported feeling frustration and sadness and said that family activities were affected.

Action for ME undertakes periodic surveys which explore the impact of ME on people’s lives. The latest published results came from its 2019 ‘big survey’. Focusing on the impact of severe ME, respondents reported that:^[11]

• almost all (99%) had stopped or reduced social contact and work
• four out of five (79%) said they required full time care
• nearly three-quarters (73%) said they are no longer able to leave home independently
• more than a third (35%) said it had affected their decision to have children
• two-thirds (64%) of respondents under 18 said they were not accessing any education and nearly half (46%) said they were in touch with other young people with ME online

The charity ran the survey again in 2025 but has yet to publish the results.^[12]

1.4 Causes

It is not currently clear what causes ME. However, several factors have been identified as being associated with the disease.^[13] These include infections, immune system dysfunction, genetics, hormonal imbalance, mitochondrial dysfunction and environmental factors. The charity ME Research UK has argued that more research is needed to determine whether “these biological abnormalities are the primary drivers of disease or secondary effects resulting in chronic illness”.^[14]

In recent years, the University of Edinburgh’s DecodeME study, which calls itself the world’s largest study of ME, has been conducting research with the aim of finding the genetic causes for people becoming ill with ME.^[15] The study is seeking to understand the disease and ultimately find treatments.

In August 2025, it announced that it had completed initial analysis of over 15,000 DNA samples.^[16] It found that an individual’s genes contribute to their chances of developing ME, as people with a diagnosis have significant genetic differences in their DNA compared to the general population. As DNA does not change with the onset of ME, the study explained that the findings reflect the cause rather than the effects of ME. The eight signals discovered are involved in the immune and nervous systems, “indicating immunological and neurological causes to this poorly understood disease”.

1.5 Treatment

1.5.1 NHS treatment

There is currently no cure for ME, with no effective drug treatment and rare cases of full recovery.^[17] However, symptoms can stabilise and improve over time.

There are treatments that can help to manage the condition and relieve the symptoms. The NHS has said they include:

• energy management, where a patient is given advice about how to make the best use of the energy they have without making symptoms worse
• cognitive behavioural therapy (CBT)
• medicine to control symptoms such as pain and sleeping problems^[18]

The NHS has also said that people with ME need to adapt their daily routine and pattern of activities on a long-term basis, with periods where symptoms get better or worse.^[19]

The 2021 NICE guidance provided advice on diagnosis and management of the condition, including care for people with severe or very severe ME.^[20] It also gave recommendations for the training of health and social care professionals and for research. However, this guidance has been subject to criticism by academics who argued that it “deviated from usual scientific standards” and could cause harm.^[21] They argued against the decision to stop recommending graded exercise therapy (GET), a previous form of treatment where physical activity was gradually increased over time. NICE rejected these concerns, stating that it stood by the recommendations it had made in the guidelines.^[22] Action for ME has supported NICE’s decision.^[23]

1.5.2 Concerns about treatment

In its 2019 ‘big survey’, Action for ME found issues with the support patients received. It reported that 62% of respondents with severe ME had said that they were either not very or not at all confident that their GP understood the condition.^[24] The survey also asked respondents what barriers they had experienced in accessing NHS services, reporting that:

• 78% said they were too ill
• 49% said there was no specialist NHS services in their area
• 47% said there was a lack of follow-up/ongoing care
• 43% said the distance and/or travel time to the service was a barrier, with 15% citing the cost of transport
• 31% said long waiting times for treatment or referral
• 15% said they did not want to use any of the services on offer

The findings of a study by the European ME Alliance (EMEA) also highlighted problems with the treatment of ME patients across Europe, including in the UK.^[25] The results showed “a concerning lack of recognition and support for individuals grappling with this debilitating disease”, with three out of four patients (74%) feeling that they had received little to no healthcare support.^[26]

Concerns have also been raised that historical attitudes to ME, which labelled it a psychological condition, continue to influence treatment and policy decisions.^[27] The government has said that many people with ME and their family members have reported dismissive attitudes towards them from some professionals, as well as feeling stigmatised because of their condition.^[28] Such attitudes have led to patients disengaging from services in some cases and can impact how they feel about themselves.

1.6 Link with long Covid

Following the Covid-19 pandemic, researchers have examined the links between ME and long Covid. In 2024, a systematic review found that over half of long Covid patients met the diagnostic criteria for ME.^[29] Stakeholders have called for further research to understand the similarities between the conditions.^[30]

2. Calls for change

In recent years, campaigners have called for greater funding for research and better care for those diagnosed with ME. For example, following the death of Maeve Boothby O’Neill, who died in 2021 aged 27 from malnutrition caused by severe ME, a coroner issued a prevention of future deaths report. This report highlighted the “non-existent” specialist care for patients with severe ME as well as the lack of available funding for research and development of treatment.^[31] It also noted there was “extremely limited” training for doctors on how to treat ME and a lack of NICE guidance. The coroner sent this report to the Department of Health and Social Care (DHSC), NHS England, NICE, the Medical Research Council, the National Institute for Health and Care Research (NIHR) and the Medical Schools Council, stating that they believed these organisations had the power to take action to prevent further deaths.

Researchers at the University of Exeter have also argued that significant improvements in the diagnosis and care of ME and long Covid patients are urgently needed across the NHS and social care services.^[32] This followed an analysis of a 2023 survey by the ME Association, completed by more than 10,000 people, reporting significant delays in diagnosis, low satisfaction in specialist services, and a need for improved self-management resources and better-coordinated care. The study also found there has not been a noticeable improvement in NHS or social care support or service provision since the publication of NICE guidance in 2021.

In its 2019 ‘big survey’, respondents with severe ME were asked what would make a real difference to their healthcare:^[33]

• 78% said a better-informed GP
• 56% said joined-up health and social care
• 67% said home visits
• 42% said accessing consultations via video conference
• 65% said more effective medication
• 38% said having more of a say in their treatment

Following a collaborative process between clinicians and those living with ME, in 2022 the ME/CFS priority setting partnership (PSP) published the top research priorities for ME/CFS to influence future research funding.^[34] The priorities, set out as research questions, included asking what is the biological mechanism that causes PEM in people with ME/CFS, how could this be best treated and managed, and which existing drugs might be useful.

3. Government policy

3.1 Delivery plan

In 2022, the then Conservative health secretary, Sajid Javid, commissioned a delivery plan aimed at transforming care for ME.^[35] The DHSC, along with the Department for Education and Department for Work and Pensions, published an interim cross-government delivery plan on ME/CFS in August 2023.^[36] The government also launched a public consultation on the interim plan seeking views on how well it identified and addressed key issues faced by the ME community and where further action might be needed. It received over 3,300 responses, which it summarised in its consultation outcome document.^[37]

In July 2025, the government published its final delivery plan on ME.^[38] It said the plan had been developed in consultation with a wide range of stakeholders, including the consultation responses it received.^[39] The plan focused on three areas where the government said it was seeking to improve care and support for those with ME:

• Research: The government announced several research investments. This included £845,000 for a Medical Research Council-funded partnership award to build infrastructure to enable ME/CFS biomedical research (building on the DecodeME study). It also announced a £1.4mn NICE research programme (called the HERITAGE study) to explore the cost-effectiveness of existing healthcare for ME/CFS and long Covid to improve quality of care. In addition, it said there would be a new funding opportunity for an NIHR application development award focused on evaluating repurposed pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS.
• Attitudes and education: The plan aimed to increase knowledge of ME/CFS among healthcare professionals and the public through e-learning modules for NHS staff and a public awareness initiative led by the DHSC. In addition, the plan said resources would be updated and shared across workstreams and relevant stakeholders.
• Living with ME/CFS: The plan contained various initiatives to improve health services for people living with ME/CFS. For example, it said NHS England would develop a template service specification for mild and moderate ME/CFS and that, along with the DHSC, it would explore if there should be a specialised service for very severe ME/CFS. The government said a clinical knowledge summary on ME/CFS would be published. In addition, the plan set out measures relating to welfare and employment, most of which were not aimed exclusively at people with ME/CFS but disabled people and those with health conditions more broadly.

The ME Association welcomed several of the government’s measures set out in the plan and its acknowledgement of ME as “a serious and often long-term disabling condition”.^[40] However, it also argued that there were several key areas in which the plan had failed to deliver. These included the absence of a long-term research strategy linked to dedicated funding and a lack of attention to severe and very severe ME. Similarly, Action for ME welcomed the plan, stating it was “an important step towards recognising the scale and seriousness of the condition”.^[41] However, it also argued that the plan “simply does not go far enough to ensure that its desired outcomes will be achieved”. In particular, the charity said it lacked a strategic approach to research investment, ambition and accountability structures.

3.2 Other measures

In May 2026, the government announced that it was investing £4.75mn in a genomics study into ME/CFS.^[42] It said the study would be the largest of its kind in the world and would enable scientists to build a high-resolution map of ME/CFS to pave the way for better diagnostics and future treatments. The government said the study would build on its earlier investment in the DecodeME study.

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