25% ME Group questionnaire results
Recently, the 25% M.E. Support Group sent out a questionnaire to find out more about the experiences of its members, who are all severely affected. The questionnaire was put together by medical professionals, researchers, sufferers, carers and NHS personnel. A total of 215 people who are (or have been) housebound or bedbound with ME for at least two years filled it in.
It is hoped that the results from this will highlight the lack of research and statistics on the problems associated with this illness, particularly for severe ME sufferers. The data suggests that there is a real need for the provision of formal guidelines to assist health professionals with an early diagnosis. Clear information and advice on the support which sufferers may receive as part of their health care plan must also be addressed
Respite care for severe M.E.
We are arranging a respite/holiday week in Abingdon, Oxfordshire on 12-19 May 2001. It will be aimed particularly at people with severe ME, but depending on numbers it may be open to others with ME.
Kingfisher Barn is in a quiet location away from roads and is fully wheelchair accessible. Carers are available, or bring your own. We will arrange activities appropriate to the individuals who come (such as a visit from a horse). Diets, flexible mealtimes and other individual special needs will be accommodated as much as possible. Some people may be able to arrange funding (or part- funding) through their care manager or from existing direct payments.
For more information contact Pat Williams (e-mail email@example.com).
From the CFS Team at Havering Hospital NHS Trust and BUPA Hartswood Hospital
No. 2 side lying
Use as many pillows under the head as required. To support the arm which is uppermost, put a doubled pillow underneath. A pillow is then placed along the length of the back and 'tucked in' a little underneath you. This prevents you from rolling backwards. One or two pillows are placed between the knees and this puts the hips and knees into a position of comfort and prevents the pelvis from rolling forwards.
InterAction No. 35 November 2000 p20
Diane Newman writes: Wiltshire Farm Foods were recommended to me by Social Services after surgery caused me to relapse badly. I was reluctant due to the depressing image of meals on wheels, but could not cook for myself so went ahead and contacted the company.
What a surprise! The variety and nutritional quality of the meals is great - including low-fat, diabetic, vegetarian and gluten-free diets. Alternatively, if you can afford it, they have a la carte meals for you to choose from, and provide Christmas special dinners too. I relied on their deliveries for many months while I was coming out of my relapse and can't recommend them highly enough.
Dishes start from £1.35 with over 150 to choose from. Meals are delivered frozen but are easy to reheat in a microwave or oven. Mini freezers for storage and steamers to heat meals in can also be purchased if necessary. Meals on wheels this is not! For a free colour brochure, call Wiltshire Farm Foods on 0800 773 773.
Photo by Audrey Spittal
The Womens' Royal Voluntary Service is currently putting together an independent meals service (no Social Services referral needed). They would be keen to hear from people with severe ME about dietary needs and other special requirements, especially those currently getting meals delivered, with ideas about ways in which such a service could be improved. Please telephone Jan Dugdale on 01926 332741 or e-mail firstname.lastname@example.org
Make the best of your bed
Jackie Fenwick writes: We have tried everything, but despite the best will in the world I still spend a lot of my time in bed. Here's my list of things I wish I had done sooner:
Buy 100% cotton, easy iron sheets. Get lots more pillowcases and treat yourself to a freshly laundered one during the day! There's nothing like the smell of clean linen.
Buy casual comfortable clothes. I used to spend my time in an old dressing gown. This hardly boosted my morale and ruled out any chance of an affair with the postman.
Get an easy to manage haircut. [Details of hairdressers who make home visits can be found in the local papers - Ed.] Get a radio with pre-set buttons and a timer so that it turns off by itself.
Get some shelves or place some lightweight drawers parallel to the bed. Aim to have enough space for everything to be at hand but out of sight.
Buy a non slip 'beanbag' laptray [e.g. Chestercare disability aids catalogue, tel 01623 757955, ref AA5820, £27.731.
Hot spots for cold nights
Naomi Whittingham writes: Mycoal Warm Packs make warmers to put inside your shoes; they can only be used once and it costs £11 for eight pairs, but I think it's worth it. In cold weather they're a dream. Also available are hand warmers, body warmers and adhesive warm patches for anywhere on the body. To order, tel 023 8021 1068 or e-mail email@example.com. [Reuseable microwaveable and freezeable 'hotbots' are also available for £11.50 from Caverill (0118 948 3142) - Ed.]
Ground floor bed
Veronica Jones writes: 'My bed is downstairs as I am not well enough to go up every day. It saves a lot of energy! I find a plastic bidet useful, as I cannot get upstairs for a bath very often. I've also had patio doors put in downstairs so I can see out when in bed and have the window open for fresh air.'
Hands free phones
Sue Rees writes: For anyone with difficulty holding the phone I recommend Audioline Petit - a miniphone with earpiece/microphone, although the miniature buttons are unsuitable for people with co-ordination problems [under £10 from Dixons/Currys].
A physio who understands severe M.E.?!
Kate Sweeney is a retired physiotherapist with 13 years' experience in the NHS working with bedbound and housebound ME patients, both in the community and in an inpatient setting. A contributor to the Government Working Group on ME/CFS, Kate is happy to answer your questions by post and may in some circumstances be able to make home visits privately for bedbound patients. You can write to Kate at Box No. 3505.
InterAction No. 35 November 2000 p21
ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY