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What support is there for people with severe M.E.?

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.

The NICE guideline says 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.”

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.

It may be possible for the district nurse to visit you, or for a friend or relative to go to the surgery on your behalf to discuss your condition. In this situation you would need to write a letter to your GP giving them permission to discuss your case.

Help with personal care

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 and community care.

Your GP can refer you for an assessment or you can contact your local department for an assessment yourself.

Aids for people with disabilities are available from your GP, other health professionals involved in your care, social services and some voluntary organisations.

Severe M.E./CFS: a guide to living

Emily Collingridge’s book Severe M.E./CFS: a guide to living offers guidance on every area 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.