People with ME, families and carers
This page provides information for people with ME, their families and carers. Whether you have ME yourself or you care for someone with ME, we hope you find this information useful. We have provided a link to resoures that you can send to your GP or other healthcare professional to help them understand ME.
The National Institute for Health and Care Excellende (NICE) guideline on ME/CFS is the official guideline in Scotland and offers a realy opportunity to improve the care of people with ME.
Information about ME/CFS
Energy Management
Energy management is the key management approach for people with ME. Over-use of energy can worsen symptoms, sometimes with long-term effects.
The NICE Guideline on ME/CFS recommends that healthcare professionals should work with patients with ME to develop an energy management plan that takes into account the activities they do - including physical, emotional and congnitvie activities. The resources below may help you understand how to manage your energy:
ME Action: Pacing and Management Guide
Long Covid Physio/Physios for ME: short video on pacing
Physios for ME: Resources for people with ME
Severe and Very Severe ME
Around 25% of ME patients have severe/very severe ME: they are largely housebound and often bedbound. These resources provide information:
NICE guideline: Care for people with severe or very severe ME/CFS
25% Group: Information on managing ME. The 25% group supports people with severe and very 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/very severe ME and the care needs of this highly vulnerable group.
ME in Children and Young People
ME affects children as well as adults.
The 2021 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:
Voices from the Shadows: two short videos on paediatric ME/CFS
Action for ME: Your Child and ME
Action for ME: Teachers and other professionals
Long Covid
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.
Information for Healthcare Professionals
In this section we have included links to our Postcards to Doctors campaign and training modules that healthcare professionals can undertaken to help them understand how to support people with ME.
Our 'Postcards to Doctors' campaign to education doctors
Help to educate your doctors about ME with ‘Postcards to Doctors’. Send a postcard to your doctor or local GP surgery, urging them to learn about the complexities of ME. A key resource that will be promoted is Dr Nina Muirhead’s one-hour CPD module on ME. Find more information and resources by following the Postcards to Doctors link.Enter text here
Template letter for GP surgery
You can play your part in educating your GP by sending them links to training on ME. We have prepared a sample GP letter for you to send to your surgery.
Share this training with your GP or other healthcare professionals by using our template
Share this training module
This free one-hour CPD accredited course contains a wealth of information, including how to diagnose the illness, the dangers of exercise, common comorbidities, and best practice in caring for people with ME. It also touches on the coronavirus pandemic and the possibility that it will trigger ME in a subset of those who survive COVID-19.
NHS eLearning programme on ME/CFS
This elearning programme has been developed in collaboration with patient groups and the Department of Health and Social Care as a resource for all healthcare practitioners looking to enhance their knowledge and support for individuals living with ME/CFS.
The Royal Colleges of Medicine campaigns
Royal Colleges of Medicine in the UK are hugely influential members organisations that oversee the training, education, and standards of medical practice across various specialties. #MEAction UK and #MEAction Scotland have organised and run information stalls at the annual conferences for the Royal College of GPs and the Royal College of Paediatrics and Child Health and successfully campaigned for the Royal College of Physicians Edinburgh to run an ME training event. We will continue to look for opportunities to engage with the Royal Colleges' members at conferences and other events.