Introduction

Myalgic Encephalomyelitis (M.E.) is a disabling long-term illness affecting an estimated 150,000 people in the UK. It affects many systems of the body, particularly the immune system and nervous system but the exact mechanisms are not yet fully understood.

Some people recover relatively quickly (in a year or two), others remain ill indefinitely. Although data is limited, perhaps around a quarter of people with M.E. are severely affected, mostly confined to their homes or beds. In children, M.E. is the most common cause of long-term sickness absence from school. *

M.E. is often called Chronic Fatigue Syndrome (CFS) but this term is disliked by many patients who consider the word ‘fatigue’ misleading and the definition too broad. The illness, its research and treatment remain surrounded by controversy and confusion.

These tips are a product of the ingenuity and experience of countless members of the M.E. community. We regret that it has been impractical to name them individually, or to trace the original ‘inventors’. For years practical tips have been passed through our community by word of mouth and pen. It is our hope that ‘The M.E. Tips Collection’ will make this easier.

As a general rule we have aimed to include tips on ‘living with’ the illness, and to exclude those on ‘treating’ it, although there is no real distinction. The individual tips have not been checked by an M.E. specialist and are not specifically endorsed by us or by any M.E. organisation. However, we do hope that you will find some of the ideas useful. We have also included addresses of relevant organisations, but these have not necessarily been recommended by anyone with M.E.

A big thank you to everyone who has made this compilation possible; to all our volunteers who made phone calls, typed and read drafts; to those who encouraged, supported and made constructive criticism; and to everyone who sent tips.

The M.E. Tips Collection is available on the Internet at www.metips.co.uk Extracts, or the full document, can be freely photocopied or printed in newsletters, but please include the website details.

If you have any comments, corrections or additional tips write to us at THE M.E. TIPS COLLECTION – C/O Action for M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY or E-mail: Zoe@metips.co.uk with ‘Tips’ in the subject heading.

Further copies of this booklet can be obtained by sending stamps or a cheque for £1 to:

The cartoon illustrations are by Graham Kennedy and Zoë Beveridge.

The M.E. Tips Collection is presented in memory of Alison Hunter.

Zoë, Trevor and Pat Williams

* DOWSETT E.G, COLBY J Long Term Sickness Absence due to M.E./ CFS in UK Schools: An Epidemiological Study with Medical and Educational Implications Chronic Fatigue Syndrome 1997; 3:29-42

References

References like AfME Pain Control mean that there is a relevant document available from one of the M.E. organisations. AfME information sheets are free unless otherwise stated and are available from Action for M.E.. Articles which have been previously published in their magazine InterAction, can be ordered from the AfME Information Service, free to members of AfME (please quote your membership number), non-members send 3 first class stamps. YAO documents are available on the Young Action Online website or by post (send 3 second class stamps for one leaflet or 5 second class stamps for six leaflets). TYMES magazines and information packs can be obtained from the Tymes Trust address below. Write to AYME at the address below for their booklets and videos.

When writing to people or organisations mentioned in this booklet, please include a stamped addressed envelope. Some of the information will go out of date. Directory Enquiries (Tel: 192) may be able to give up to date telephone numbers. Please let us know about any errors.

M.E. varies a lot in its symptoms and severity; none of the tips will be suitable for everyone. Take care when trying new things, pace yourself and use your own judgement as to whether you are up to it. Where a service has been mentioned, the organisation concerned may provide other services as well.