Myalgic Encephalomyelitis (ME)

Myalgic Encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS), is a complex, chronic (long-term) medical condition. Whilst ME can affect anyone, around 80% of ME patients are female.

This page provides information on ME, and our work in this area.

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The following information is based on the lived experiences and priorities expressed to us by our community. If you need medical/health advice, please contact a GP or medical professional. Read our medical disclaimer

What is Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis (ME) means inflammation of the brain.
The cause of ME is not known, however many go on to develop it following an illness or a virus.
Pre-Covid there were thought to be over 250,000 people in the UK with ME (or CFS), but the latest estimates suggest there are now around 1million people living with it in the UK. This might be because, for some patients, Long Covid can develop into ME.
ME is divided into four levels of severity; mild, moderate, severe and very severe. About 25% of ME patients will be severely disabled.

Many ME symptoms overlap with other conditions, making diagnosis challenging. The main indicator of ME is Post-Exertion Malaise (PEM) or Post Exertional Symptom Exacerbation (PESE), which is where symptoms can worsen in response to even the slightest mental and physical activity. Sometimes these flare-ups can be permanent.

Other symptoms include chronic fatigue that does not improve with rest, disturbed and unrefreshing sleep, chronic pain, sensitivity to noise or sound, cognitive dysfunction, bowel problems, flu-like symptoms, swollen glands, and many more.

There are various theories about the possible causes of ME, such as chronic low levels of inflammation of the brain, but a lot more research is needed to help us understand what causes ME, as well as how best to prevent, treat, or cure it.

There are currently no treatments specifically for ME. Some medication and therapies may help manage symptoms, but each person will be different.

Energy Management, or ‘Pacing’ is seen as one of the best ways to manage symptoms and energy levels, to help avoid ‘crashes’ where symptoms worsen.

More information about ME can be found at on the NHS Wales website here.

What are we calling for?

Our overall aim is to ensure that those living with ME in Wales are able to access healthcare that is safe and compliant with clinical guidance issued by the National Institute for Health and Care Excellence (NICE).

It can be very hard to diagnose ME because there is currently no diagnostic test for it. Because of this, it is very important that healthcare professionals follow the NICE Guidance to make a diagnosis, but this can be difficult when awareness of the condition remains poor within healthcare settings, amongst patients themselves, and within wider society.

You can find out more about the diagnostic process from a patient’s perspective on WAMES’s website here.

Patients across the UK struggle to access appropriate healthcare due to long diagnostic delays and myths about ME which see it often not taken seriously or misdiagnosed. In Wales, there is a lack of specialist support available for the condition, which can make things even more difficult for those who have the most severe forms of ME.

In Wales, NICE guidance on how best to manage ME isn’t necessarily being followed

The guidance was updated in 2021, but many healthcare providers in Wales aren’t aware of it, and services aren’t set up to follow the recommendations.

The NHS Wales Neurological Clinical Network which oversees the development of neurological services in Wales doesn’t currently recognise the term ME, so the condition is not a priority in neurology services or plans.

Currently, Wales-wide service developments for ME will be overseen by the Musculoskeletal (MSK) Clinical Network, but ME patients are concerned that this runs the risk of focusing more on physical exercise which can make ME symptoms worse.

Graded Exercise Therapy (GET) has been removed from NICE guidance because evidence has shown it to be harmful for many patients, causing their health to decline further. However, some clinics and healthcare providers in Wales continue to focus both GET and Cognitive Behavioural Therapy, the latter of which has also been removed from NICE guidance.

At present, there are no ME specialists in Wales. Whilst some clinics are being set up in parts of the country, patients in Wales are not normally able to use services which aren’t offered in their own health boards. This results in an unfair postcode lottery.

Because there is a lack of specialist care for ME in Wales, for the most part, GPs are expected to manage the condition. However, many patients need much more complex support. When hospital admissions are required, many ME patients report avoiding them because the typical hospital environment can trigger more symptoms.

Despite being recognised as a neurological condition for decades by the World Health Organisation, ME patients across the world, including in Wales, continue to experience a lack of support and understanding. Many healthcare providers and wider society continue to dismiss or misattribute symptoms as psychological – and often gendered.

We need to:

Raise awareness and bust myths about ME. Because like many other chronic conditions, ME mainly affects females, there are lots of gender stereotypes about the condition and the people living with it, such as being ‘hysterical’, ‘over-sensitive’ or just lazy. We urgently need to see these misconceptions addressed if ME patients are going to be treated with the dignity and compassion they deserve.
Ask that the Neurological Clinical Network in Wales recognises and adopts the term ME, and takes on the responsibility of developing and overseeing services for the condition, ensuring patients have access to appropriate care.
Ensure that the NHS in Wales adopts and implements the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management NICE guideline, published in 2021.
Develop ME training for healthcare professionals which is co-produced with patients and implemented across Wales. This would help to ensure that GPs can identify specific characteristics of ME and make a diagnosis in a timely way.
Call for access to occupational therapy for day-to-day management of ME patients and also ensure all ME patients who are housebound have routine access to community nurses who can monitor patients’ needs and provide care.
Address systemic postcode lotteries in Wales, so that ME patients can access additional specialist expertise wherever it is located.
Co-design hospital settings and services with ME patients, so that the care offered is safer and more ‘ME-informed’. This would help to avoid triggers which can make symptoms worse and cause trauma for patients.
See more investment in Wales into research on ME, its causes, its symptoms, treatments, and a cure. Research should also examine patients’ experiences in Wales and identify their needs, with the Welsh Government committing to implement recommendations.

Our champion: Dee M

I was diagnosed with ME in 2019, after years of on and off symptoms, and I have despaired at how little healthcare is available to patients and how we are so badly misunderstood.

I am lucky that I am still able to work a few hours a week and maintain some independence. Many in our community are too poorly to advocate for the changes we need, so I see it as my responsibility to advocate on their behalf for as long as my health allows me to.

I am a patient representative on the Women’s Health Wales Coalition, for which we partnered up with the Welsh Association of ME and CFS Support (WAMES). On behalf of FTWW, I continue to liaise with WAMES to ensure we are working together for positive change.

Read Dee's story

What have we achieved?

Our campaign activity to improve the lives of those living with ME is extensive. Some of our achievements are outlined below:

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We raise awareness through events, media, training and fundraising

In the absence of effective medical treatments or a cure, energy management or ‘Pacing’ is seen as one of the best ways to manage ME symptoms. We raise awareness among our community and ran a pacing masterclass with Jo Southall, a disabled Occupational Therapist who supports disabled people to learn about and implement energy management – whatever their health issue

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We take part in consultations, advisory boards and co-production of healthcare

We attend meetings with the NHS Wales Executive’s Planned Care Programme, where we have the opportunity to raise awareness of the need for joined-up care for conditions like ME, and the importance of health boards collecting data on Patient Experiences and Outcomes, to enhance learning and improve care.
We meet regularly with the Welsh Government’s Women’s Health Policy Team and NHS Wales Clinical Strategic Network for Women’s Health to ensure ME and ‘sister’ conditions like Long Covid are prioritised at the highest levels. We will continue to make the case for a ‘women’s health’ lens to be applied to conditions like these, which disproportionately affect women and people registered female at birth.

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We engage directly with policy makers and researchers

We ensured that evidence about both ME and Long Covid, coproduced with both WAMES and Long Covid Wales, featured in the Women’s Health Wales Coalition’s report to the Welsh Government, ahead of publication of the NHS Wales 10-year Women’s Health Plan.
We continue to collaborate with WAMES and Long Covid Wales as part of the Women’s Health Wales Coalition to call on the Welsh Government and NHS Wales to work with ME patients and ensure they have access to improved, co-produced services which meet their needs.

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