As anyone with M.E/C.F.S knows, having this illness can be pretty isolating. Your friends and family may find it hard to understand what you are going through, no matter how supportive they are. But how do you meet people who really do understand what it is like? One of our main aims is to put members in touch with one another to share experience and offer one another support - here are some of the ways we do this.
This was one of the features of the group from the very start, back in 1992, and is as popular now as it was then with about 80% of members opting in. Those taking part give contact details (e.g. name, address, phone, email) and a few details about themselves (e.g. interests, age, level of illness, times to contact, sort of contact wanted) and these are collected together and printed out as a list, circulated to all list members. The idea is to help people make contacts and friendships – perhaps there is someone down the road from you who shares the same interests? It seems that members only ring those they haven’t met before now and then, so you needn't worry you'll be flooded with calls from strangers. Many of us seem to find the contact list a warm comfort-blanket, there if we need it.
We have an internal email group exclusively for members. For those who can use computers it is a great way to communicate with a group of people at once as anything posted to the email group goes to everyone who has joined it. Members use it to pass on information, to ask for experience, advice or practical help from others or just to have a bit of banter. We usually have volunteers who pick up posts from some of the national email groups on ME topics and pass them on – a minimal-energy (for everyone but the volunteer that is!) way to keep up with what is happening with ME in the wider world.
Website blog and discussion forum
Members can use the website to post their views, seek help or just let off steam. Past discussion on particular topics is easily searchable to find the information or advice you are looking for.