Around one in four people with M.E. can become severely affected by the condition. They are often unable to leave the house or their bed, and accessing appropriate care and support can be a challenge. Action for M.E.’s 2019 Big Survey of more than 4,000 people with M.E. found that:
- 95% of respondents with severe M.E. said they had stopped or reduced household tasks
- 98% had stopped or reduced social contact
- 66% require full or part-time care
- 59% were no longer able to leave their home independently.
Severe M.E. has a considerable impact on the whole family. One Big Survey respondent told us:
"My youngest daughter does not know me without M.E. I spend the majority of my time in my bedroom, alone. I would only see the children for one minute a day with an hour gap in between for me to rest. I spend very little time with my wife and children."
Find out more in our two-page explainer on severe M.E.
Hear from people with M.E. and health professionals in the Dialogues for ME/CFS film series about severe M.E.
Healthcare for severe M.E.
The NICE guideline for M.E. (undergoing essential updates, though this process is on hold due to the Coronavirus pandemic) says:
“People with severe M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.”
It adds that management of severe M.E. is “difficult and complex and healthcare professionals should recognise that specialist expertise is needed when planning and providing care.”
How we can help
We work collaboratively with professionals to raise awareness and increase understanding of M.E., including severe M.E. If you have severe M.E., we offer a number of different services that you and those supporting you may find useful.
- We can offer information, support and signposting to services that can help you and/or your carers. We are also able to offer individual advocacy, supporting you or your child with M.E. to have your voice heard and access health, care and education you're entitled to. Contact our Crisis, Advocacy and Support Service today.
- If you are able to use a device to get online, even if only for a short amount of time, our free, supportive M.E. Friends Online forum offers friendship and understanding in a safe space.
- Emily Collingridge’s book Severe M.E./CFS: a guide to living offers guidance on every aspect of life with severe M.E. It’s aimed at families and professionals, and the author herself lived with severe M.E. for many years. In her first chapter, Emily says:
“Patients with severe M.E. are vulnerable and in need of a great deal of practical help, emotional support and comfort from others. However, it is possible for patients to take control of their lives and the management of their condition, to achieve mental/emotional independence and to guide others in providing the personalised care that they need.”
Other support available
There have been almost no biomedical research studies on severe M.E, so we know very little about its biology, and what treatment or management approaches might be helpful.
If you are unable to get to the surgery because you feel too ill to leave your home, your GP may agree to visit you at home. It may be helpful to discuss this with your GP on the telephone or get a friend to do this for you.
Local social services/social work departments are responsible for providing home care services for people who need help with washing and dressing. Home care may also be called home help, social care or community care. Your GP can refer you for an assessment or you can contact your local department for an assessment yourself.