What can local support groups offer the severely affected?

By Melissa Mehta, edited by Zoe Williams

Lack of mobility leaves most severely affected members unable to access support group meetings. Undeterred, some local groups are pioneering new ways to reach out to the housebound - but only if they know you exist... Services on offer to people with severe M.E. naturally vary from area to area dependent on available funds and volunteer input - from the Stockport group's nurse-led domiciliary service, (details on page 16) to tiny groups of ill people struggling to offer basic services like a contact list and newsletter. Either way, we'd encourage severely affected readers to join your local group, so at least they know you're there.

Lessening isolation

Loss of social contact is often a big issue so it's good that most local groups put people with M.E. in touch with others living nearby for friendship and mutual support.

Finding someone on your wavelength is easier if the group circulates a members' contact list including, where permitted, each individual's interests, age-range and level of illness. Does your group do this? If not, could you ask them to or volunteer to set it up yourself if you're able? Carers may also appreciate a contact list, to reach others in a similar position. The Rainbow group in Devon, like many others, has now set up both a telephone and an e-mail network as some people who are too ill to use the phone are able to get online at home. A co-ordinator adds: 'We are aware that the needs of those severely affected differ from others, so we put them in touch with the 25% group*. We have a benefits adviser who can make home visits, in addition to a list of local therapists willing to do so.' Other groups keep lists of local GPs, therapists and specialists whom members have found supportive - especially useful if they are known to make home visits.

Meeting special needs

For those who can manage the journey to a meeting, smoke-free, quiet and wheelchair-friendly venues, such as those offered by the Leeds and District group, are welcomed. Meanwhile, M.E. Staffordshire Support arranges lifts for members who are unable to travel alone. Some groups manage to record talks onto cassette when they have a guest speaker, so that people at home have an opportunity to listen.

'My group has ignored me since I joined because I have been too ill to attend meetings' Being unable to access meetings can, however, leave people feeling unsupported. One severely affected member writes: 'All [the group] has done since I joined is ignore me because I have been too ill to attend meetings.' Frustrating - but groups can be about much more than face to face meetings.

Websites are an efficient way to direct those with internet access to further sources of information and support, that of the Sheffield Group (www.sheffieldmegroup.co.uk) being an excellent example. Some groups offer a library service, with donated relaxation tapes, books on M.E. and cassettes of talks about the illness made available by post. A listening ear helpline is another valuable service some groups are able to provide, but there should be clear boundaries to prevent listeners becoming overstretched (e.g. a rota of volunteers and clearly stated 'available times').

The all-important newsletter

A newsletter is probably the best way to reach people who are housebound and their carers. It could include details of how to access local services such as the mobile library, useful phone numbers, write-ups of talks, members' experiences and practical tips from other local people with severe M.E.

Some people find recovery stories encouraging, while others benefit from learning about the experiences of others coping with serious difficulties. Large print and a clear uncluttered format is helpful for those who find reading difficult. Like InterAction, some groups offer publications on tape for members who find it easier to listen than read.

Martin Frayn, who edits the Staffordshire group newsletter, encourages members who are having a better time to offer to phone or visit others who are not so well, particularly at crunch times like Christmas. An occasional card is another way to show support. Groups should also try to include the needs of people with severe M.E. in awareness-raising events such as talks for local professionals. Service providers often have limited experience of M.E., and mentioning the issues affecting people who are housebound or in bed is very valuable for bringing this often 'invisible' group into public consciousness. But they have to know you're out there! *contact details on page 47. To find your nearest support group, call our Wells office or e-mail admin@afme.org.uk

Interaction Issue 44 April 2003 p39

ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY
Website: www.AfME.org.uk