The role of a support group

Understanding and acceptance

ME/CFS is very difficult to understand for people who have never suffered from it. Sufferers can easily lose their confidence to go out and mix with other people, feeling that they are dull and have nothing to contribute to a conversation, and may even develop agoraphobia. The group gives us a reason to leave the house and an opportunity to meet people who actually understand, and helps us to view the condition as a disability to work around instead of an overwhelming and life-destroying event.

Confirming that individual members suffer from ME

The general belief is that there is a set of closely related conditions known as CFS, and ME is a specific branch of these. Both "types" of sufferer are welcome in the group. Diagnosis is very difficult and usually only comes after a long-drawn process of elimination. A few doctors still unfortunately refuse to believe in ME and may see diagnosing CFS as admitting that they don't really know what's wrong with you, or worse. Discussion with members helps confirm whether you have CFS/ME. It's about so much more than fatigue, but no matter how bizarre your symptoms you will be amazed at how many people in the group share them, and you're not going mad.

Providing emotional support

The emphasis in HFwME is making friends with whom we can talk about personal issues and experiences in the context of having CFS/ME without constantly having to explain it. It is very difficult to keep up with healthy old friends, whose idea of even unwinding on a quiet night out is a stressful struggle to us.

At meetings we have a chance to enjoy socialising again. Knowing that the other members will understand without explanation if we have unusual eating habits or occasionally start talking nonsense or need to lie down for a while takes the stress away. Talking to other people facing similar problems gives us confidence and encouragement to tackle our own and set achievable goals.

Sharing information about ME

Whilst most group meetings will try to maintain a positive, "upbeat" approach, and we don't just sit around and whinge about our condition, we also realise that new members need to talk directly about ME-related issues; we are always happy to oblige. Between us we have a wealth of information to offer about the benefits system and related services, complementary medicine, and how to manage the condition with techniques such as pacing (not to be confused with graded exercise).