Medical education resources on ME

Thank you for taking an interest in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

This page brings together a range of resources to help you keep up-to-date on the latest recommendations and support your patients.

NICE Guideline (2021)

The NICE guideline for ME/CFS (NG206) is a vital update on the guidance for diagnosis and management of the condition. It is a significant revision of the previous guideline and includes specific guidance on caring for people with Severe and Very Severe ME/CFS, as well as children and young people.

For quick reference, see:

• ME Association: Summary of the 2021 NICE Clinical Guideline for ME/CFS
• Doctors with ME: What NICE ME/CFS means for GPs, including a useful summary.
• MIMS Learning CPD module on the NICE guideline (1 hour).

The module is accompanied by a podcast series with contributions from clinicians, allied health professionals, people with lived experience and their carers.

Principles of Energy Management

Energy management (or “pacing”) is a critical self-management tool for people with chronic illnesses such as ME/CFS and Long Covid, where post-exertional malaise/symptom exacerbation (PEM/PESE) is a feature. This short video from the Bateman Horne Center explains why exercise causes harm in these cases.

For further reference, see:

• Action for M.E.: guide to Pacing for People with M.E..
• Long Covid Physio (with Physios for ME): short video for patients on pacing.

Severe and Very Severe ME

Around 25% of ME/CFS patients have Severe or Very Severe ME. This group is largely housebound and often bedbound.

Severe ME can be dangerous and sometimes fatal. Often people with Severe ME do not access healthcare or other services as there is a widespread lack of understanding of their care needs. A misinformed approach to their care can make their condition significantly worse. 

For further information, see:

• NICE Guideline: Care for People with Severe or Very Severe ME/CFS
• Information for professionals from the 25% Group which supports people with Severe ME.
• The series Dialogues of a Neglected Illness have created three short videos (all under 20 minutes), which give a powerful insight into life with Severe ME and the care needs of this highly vulnerable group.

Children and Young People with ME

ME affects children as well as adults. 

The NICE guideline, including its guidance on Severe ME/CFS, applies to children and young people just as it does to adults. In addition it includes some specific recommendations relating to children and young people, including: 

• When to suspect ME/CFS in a child or young person; the involvement of paediatricians including those with expertise in ME/CFS; and the frequency of ongoing reviews.
• Advice for a child or young person who is well enough to continue with education or training, offering early support to facilitate necessary adjustments such as a reduced timetable and access to home-based learning. 
• Guidance on safeguarding.

See also:

• ME/CFS Diagnosis and Management in Young People: A Primer.
• Voices from the Shadows: two short videos on paediatric ME/CFS for medical professionals.
• A Good Practice Guide to Education for Children with ME: a short guide from The Young ME Sufferers (Tymes) Trust.

Long Covid and ME

Long Covid is an evolving picture. However, it is clear that there is substantial overlap between ME and Long Covid. Research studies suggest that between 40% and 60% of those with Long Covid also meet the diagnostic criteria for ME. 

More on this can be found in the ME Association’s free booklet, ME and Long Covid: Are They the Same Condition? 

Long Covid also affects children in significant numbers. Long Covid Kids provides information and support to children and families affected by Long Covid. 

Other information and support

For health professionals

• ME Association’s information for healthcare professionals.
• Action for M.E.’s resources for health professionals.
• Doctors with ME’s education materials for professionals, and a guide on what good practice looks like which includes patients’ input.
• Physios for ME’s specific resources for physios.
• The British Association of Social Work’s practice guide for social workers when responding to concerns about Fabricated and Induced Illness and medically unexplained symptoms.

Watch #MEAction UK’s video campaign on what the new NICE Guideline means to patients.

For patients and carers

• The ME Association offers many factsheets and resources, a telephone helpline, and signposting to local services and support groups.
• Action for M.E. provides information and support for children and adults with ME and their families, and for teachers, schools, social workers and employers. The support they offer includes advocacy and medical, counselling and chaplaincy services.
• The 25% M.E. Group provides information and support for people with Severe and Very Severe ME, including a community forum for members.
• The Tymes Trust (also known as the Young ME Sufferers Trust) offers information, support and help with professional referrals for children affected by ME and their families.

Research into ME

The UK Government’s Department for Health and Social Care (DHSC) has recently published My full reality: the interim delivery plan on ME/CFS. 

This plan concludes that: 

• The research community has a low capacity and capability to respond to ME/CFS research needs.
• Awareness of those research needs is low.
• The level of biomedical research on ME/CFS that has been funded is also low. 

The plan commits to act in three areas: research strategy, capacity and capability in the research community and building awareness and trust between stakeholders. Responses to the consultation on the plan were submitted by both #MEAction UK and #MEAction Scotland.

In 2020, the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) jointly awarded £3.19 million to the DecodeME project led by Professor Chris Ponting of the Human Genetics Unit at the University of Edinburgh. Currently the world’s largest study into ME/CFS, it aims to find the genetic causes of why people become ill with the condition. 

Action for M.E. and the James Lind Alliance brought together ME organisations, patients, carers and clinicians to create the ME/CFS Priority Setting Partnership. They carried out a participatory process to identify the top 10 research priorities to influence future research funding.

Thank you again for taking the time to look at this page and we hope you have found the resources helpful.