Severe M.E.

Edited by Zoe Williams

Beds, Noise and Communication

AfME member Daniel Doveton describes some things that have helped him

... in bed

I used to suffer greatly from the weight of the bedclothes, having to use two bed cradles to keep the covers off my legs. Recently I acquired a waterbed and have consequently been able to dispense with the cradles. The amount of 'give' in the mattress might not suit everybody but it does help to relieve pressure problems while maintaining full support.

Another benefit is that the water heater can be regulated which is useful if one feels the cold - this might assist in relieving muscle pain. Waterbeds are not cheap (mine cost over £1000!) but some might find the expense worthwhile. Suppliers can be found in the Yellow Pages or on the Internet and many offer national delivery and installation. It is best to use a specialist supplier with a decent range of beds.

...with noise sensitivity

One option in dealing with noise sensitivity is 'white noise' (to block out surrounding noise). I have a Walkman which will play continuously (it keeps turning the tape around). If noise is bothering me, I insert a tape which features the sound of waves.

Zoe adds: 'A "Do Not Disturb" or "Quiet Please" sign can let other householders know when you particularly want quiet. Some people with M.E. watch television with the sound off (sports and nature programmes can be good like this). Try subtitles on Teletext page 888.'

...with communication

It can be very exhausting explaining what needs doing to new carers. I dictated detailed instructions about my routine and these were placed in a file. It did save a lot of trouble, although not all carers like it! I find voice recognition software indispensable in enabling me to make contact with the outside world as it means I can dictate. This does not work flawlessly though and it's very helpful if one can use the keyboard a little as well. AbilityNet (the charity which supplies adapted computer equipment to disabled people) can offer advice. I use Dragon NaturallySpeaking but would be interested to hear from people using other software, to see how it compares. If funding for computer equipment and software is a problem, AbilityNet may be able to make suggestions.

AbilityNet can be reached on their freephone number: 0800 269545, or by e-mail to For more advice on M.E.-friendly computers, see our feature in InterAction 37 (page14-16; photocopies free from the Wells office). Daniel Doveton can be reached c/o AWE via Box No. 3921 or e-mail For further ideas on increasing your comfort in bed and coping with noise sensitivity and communication problems, check out the newly extended M.E. Tips Collection - details on page 47.

Support for severe M.E.

The 25% M.E. Group offers a range of services to people who are severely affected, many of whom are virtually house or bedbound. Encouraging contact between members via a bi-annual newsletter and contact list, the Group's main aim is to alleviate the isolation felt by people with severe M.E. and their carers. Activities and special interest groups run by members include art therapy and a talking book service. In addition to a postal library service and telephone support helpline, some medical information sheets and welfare rights advice (with limited advocacy) are also available. The group has a new website at featuring a number of contributions by their medical adviser, M.E. specialist and researcher Dr Betty Dowsett. In addition, members can place a message on the site's noticeboard to interact with other severely affected people.

For further information about the group, visit the website above, e-mail enquiries® or call 01292 318611, ideally 11 am-5pm. Alternatively, write to 25% M.E. Group, 4 Douglas Court, Beach Road, Barassie, Troon, Ayrshire, KA10 6SQ. Ordinary and associate membership costs £7.50 a year (cheques payable to 25% M.E. Group).

Interaction Issue 43 – January 2003 p26

ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY