Severe ME
Around one in four people with ME 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 ME’s 2019 Big Survey of more than 4,000 people with ME found that:
- 95% of respondents with severe ME 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 ME has a considerable impact on the whole family. One Big Survey respondent told us:
"My youngest daughter does not know me without ME. 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 ME.
Hear from people with ME and health professionals in the Dialogues for ME/CFS film series about severe ME.
Healthcare for severe ME
The October 2021 NICE guideline for ME/CFS describes four levels of severity of ME/CFS, and offers specific guidance for caring for people with severe or very severe ME/CFS.
This includes advice on:
- awareness of severe and very severe ME/CFS and its impact
- assessment and care and support planning by an ME/CFS specialist team
- access to care and support, including hospital care
- managing ME/CFS, including energy and symptom management, and dietary strategies.
The guideline says:
"Service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs. This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances."
How we can help
We work collaboratively with professionals to raise awareness and increase understanding of ME, including severe ME If you have severe ME, 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 may also able to offer individual advocacy, supporting you or your child with ME to have your voice heard and access health, care and education you're entitled to. Contact our Information and Support Service today.
- Our Healthcare Services team includes a doctor, physiotherapists, counsellors and chaplains, offering individually tailored whole-person care, with an understanding of severe ME. As a charity, we charge fees for our Healthcare Services only to cover our costs, and a bursary for up to 50% of fees may be available, depending on your circumstances.
- If you are able to use a device to get online, even if only for a short amount of time, our free, supportive ME Friends Online forum offers friendship and understanding in a safe space.
- Emily Collingridge’s book Severe ME/CFS: a guide to living offers guidance on every aspect of life with severe ME. It’s aimed at families and professionals, and the author herself lived with severe ME for many years. In her first chapter, Emily says:
“Patients with severe ME 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 ME, 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.
