Management – Severe ME & Helping You Cope


In this comprehensive 12-page leaflet, we discuss Severe M.E. – the symptoms, some thoughts about management, symptom relief, how you can explain your illness to family, friends, and carers – and we consider the help you may be able to get.


“In this 12-page leaflet, we discuss Severe M.E. – the symptoms, some thoughts about management, how you can explain your illness to your family and carers together with what help you may be able to get.

“It contains a two-page checklist that you can pass on to the people responsible for your care. And severe sufferer Hannah Radenkova describes what it’s like being on the receiving end of the stigma that is so often attached to the illness…”

Topics discussed in this comprehensive leaflet, include:

  • What do we mean by severe M.E.?
  • What are the symptoms of severe M.E.?
  • Disability Rating Scale
  • Symptom management – what can be done to help?
  • Pacing and energy management – how do I deal with very limited physical and mental energy?
  • What effect can severe M.E. have on your emotional and mental health?
  • Make a real effort to get your GP on your side
  • Pull-Out: How the main symptoms of M.E. affect me
  • What can be done to ensure carers understand?
  • How do I get help from social services?
  • What aids, adaptations, and equipment are available to me?
  • How can I explain to family and friends how ill I am?
  • Are there any benefits, grants, or permits that might help me?
  • Has any research been conducted on severe M.E.?
  • Where can I obtain further information and support?

Telephone Helpline

The ME Association telephone helpline – ME Connect – is available every day of the year, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm. Please phone: 0344 576 5326 if you have any questions or would simply like to talk to someone who is there to listen.

Please note this leaflet is a download. You can read it on-screen and save to your computer, phone or other device and can attach it to any email you might need to send. But you will need access to a printer if you wish it printed.


0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.