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Action for ME
InterActions Quarterly Update
August 2000
For those with medical enqueries, especially in the UK
Please note that due to limited resources, we cannot usually give personal replies from our medical advisors to individual enquiries. Instead, the most common problems from letters we receive each month from our members are selected for publication in InterAction with a reply attached from our medical advisor. However, we have standard information covering many of the medical problems you write in about, although this is for information only and not meant to take the place of medical advice (see below). For a membership information pack, please call 017 4967 0799 or send an SAE.
If possible, please send in 50p per information item ordered to cut down our costs, paying any small amounts in stamps, plus a LARGE SAE, if you can
contact details for your nearest ME support group as well as special interest groups eg for carers, penpals, parents of sufferers, young people etc. are available from Head Office. Local groups are vital as they may know of good therapists and GPs/specialists who live nearby and you may be able to meet others who have the same type of health problem and swap ideas. Many have good libraries and most will keep you updated with a regular newsletter and meetings.
Many of the commonest questions we receive about symptom management and useful therapies are answered in our extensive range of fact-sheets (many free with SAE to members). For more details see any InterAction under ‘information and promotional items’ or call Head Office (there is not space to list all factsheets in every issue).
These include: (free with SAE), Information for doctors Diagnostic guidelines for ME, Coping with ME, When Someone has ME - guidelines for friends and family, Sleep disorders (£1 in stamps) Children with ME (£1 in stamps) , holidays and respite care (£1 in stamps). Westcare (0117 923 9341) also have booklets on pacing, information for doctors, UK ME Clinics and on managing the illness.
Therapy information pack (50p each or for members, save £3 by buying all 16 for £5):
Pain control, Candida, magnesium and efamol, colon cleansing and probiotics, allergy and food intolerance, anti depressants, allergy desensitisation, stress, meditation and relaxation, vitamins and minerals, diet, graded activity and exercise, homeopathy, osteopathy, aromatherapy, acupuncture, yoga.
We also have standard letters and information on:
Pacing yourself Antioxidant therapy conditions to exclude hyperventilation
sleep disturbances coping with pain thyroid problems low blood pressure low blood sugar amino-acids Eye problems Dr Myhill’s ME checklist (management overview) ME compared to MS heart symptoms and ME IBS bloating Immunisations and ME Anaesthesia and surgery Endometriosis and ME pregnancy coeliac disease (gluten intolerance) sexual advice ME and auto-immune diseases Adrenal stress Glycaemic eating (for low blood sugar £2) Ampligen (regularly updated) mycoplasmal infections Organophosphate poisoning Hormone imbalances (periods, PMT and contraception)
3) A particularly useful reference book is AfME medical advisor Dr Myhill’s book of fact-sheets (reviewed in issue 25, p72) which covers most aspects of ME management and therapies. This is available from our lending library or directly from Dr Sarah Myhill for £8 incl. p&p - send cheques to Dr Myhill at Upper Weston, Llangunllo, Knighton, Powys, Wales, LD7 1SL. We also recommend ME - How to Live with It by Dr Anne MacIntyre, (Thorsons, £8.99 - call the WHSmiths orderline on 0345 581549)
The internet mailing group the M.E. BBS Information Mailing Service sends out regular mailings about ME/CFS from the World Wide Web (on paper or on disk) to its members. More importantly, they can search for files and ‘post up’ questions on the Internet on behalf of ME sufferers, and have a vast library of articles. Responses are usually speedy and quite detailed, with information often coming from the USA. Membership is around £12 a year. Contact Deborah Shearer at 4 Twain Avenue, Stenhousemuir, Larbert, Stirlingshire, FK5 4HL, tel/fax. 01324 554203 or e-mail Deborah at dshearer@ndirect.co.uk
There is a WWW page about the ME BBS service at: http://www.ndirect.co.uk/~dshearer/index.htm
5)Other free services offered by AfME to members include:
Our helplines for general information, welfare benefits advice and counselling, (see back of InterAction for numbers)
Our Noticeboard in InterAction (with a free box number facility if required) if you wish to hear from other sufferers who share your problem and may be able to advise you.
Our library of books relating to ME also has audiotapes for coping with ME, pain relief, anxiety, relaxation, yoga and insomnia. To buy, send SAE for details of range to Diana Lampen, 21 Heathfield Gdns, Stourbridge, West Midlands, DY8 3YD.
The Action for ME website at www.afme.org.uk for regularly updated articles, factsheets and news from AfME and an interactive noticeboard.
6) The ME Tips Collection (compiled by Zoe Williams, AfME London office only, £1) is an indispensable reference from A-Z of everything you need to know about living with ME. Headings include bed, coping strategies, cooking, eating, holidays, light and noise sensitivity, pain, quality of life, sleep, travelling and many more. Each heading has useful information about coping with a particular symptom or problem and where to get more help and is cross-referenced. This is especially useful for the severely affected.
The Definitive A-Z ( £2 from AfME Wells office) is a list of useful contact addresses for further support and advice, with headings covering allergies, benefits, young people and yoga.
Back issues of InterAction may contain articles which cover the problem you have written to us about. Many back issues are available to members for £2 each or £5 to non-members. Call the Wells office for details of which are available.
Counselling contacts
The Action for ME counselling line (see back of InterAction - members only)
The Samaritans can be reached on 0345 909090 24 hours a day
Your GP or hospital consultant can refer you to a counsellor, psychotherapist, psychiatrist or clinical psychologist (For cognitive behaviour therapy) on the NHS.
Westcare (see above) offer counselling face to face or via telephone for a donation to people with ME and their carers
Other useful contacts:
FIND A DOCTOR:To locate a doctor in your area specialising in any particular field, depending on your needs, go to the excellent free website www.which-doctor.co.uk . To find a nutritionist who’s also a doctor, contact The British Society for Allergy, Enviromental and Nutritional Medicine (charity) - SAE to BSAENM, PO Box 7, Knighton, Powys, LD7 1WT, tel. 01547 550378. For a list of ME-friendly doctors, local support groups are the best source of information, while the North London ME Network on 020 7281 5801 and Westcare (see below) have both produced a list of UK ME clinics.
For FREE MEDICAL ADVICE check out www.netdoctor.co.uk and there are five UK Royal Homeopathic Hospitals: London, Bristol, Liverpool, Glasgow and Kent (all NHS trusts, you just need a referral from your GP - the only holistic treatment for ME/CFS available on the NHS). More details of these in InterAction factsheet on homeopathy. London hospital treats the most ME patients..
Helpline for ME - Former nurse Marion Chilton, who herself has severe ME, offers emotional support and practical advice on diet, sleep and pacing, access to care and all aspects of illness management. 10am-5pm only Monday to Friday on 01430 873 061
the ME Support Centre (Essex, 01708- 378050) receives both in and out-patients while Westcare (Bristol, 0117 923 9341) and the Yoga for Health Foundation (Bedfordshire, 01767-627271) offer courses in managing ME - ask about NHS funding.
The CFIDS Association of America is strong on information concerning medical treatments and research developments for ME/CFS. Fantastic website at www.cfids.org. PO Box 220398, Charlotte, NC 28222-0398, USA. 24 hour information line tel. (001) 704 364 0016. Fax. (001) 704 365 9755. E-mail cfids@cfids.org
The Fibromyalgia Association 01384 869 467 (muscle pain and spasms)
National Federation of Spiritual Healers - call 01932 783164 for details of an NFSH accredited healer in your area. Some do home visits and many do not charge much
Labs for a range of non-invasive lab tests you can do (often at home but results must go to a doctor) for gut, hormone and sleep problems etc. Health Interlink (01582 794094) can provide a list of tests available and doctors who can interpret. Other labs include Diagnostechs (0800 731 5655) or visit (London based) Biolab’s website at www.biolab.co.uk (020 7636 5959)
NHS Direct (24 hrs) for all health-related queries and details of local services: 0845 4647
the Chronic Fatigue Syndrome Research Foundation have produced a pamphlet for doctors of therapies proven in research to help some ME/CFS patients: 4 One Tree Lane, Beaconsfield, Bucks., HP9 2BU tel. 01494 674769.
The 25% ME Support Group for those with severe ME, SAE to Simon Lawrence, 4 Douglas Court, Beach Rd, Barassie, Troon, Ayreshire, KA10 6SQ
Young Action (AfME young people’s group) call Kathrine on 01749 677551
10) Pain relief (and see AfME factsheets)
For a directory of NHS pain clinics in the UK, including a list of local support groups around the country, send a cheque for £5 payable to College of Health at College of Health, Saint Margarets House, 21 Old Ford Road, London E2 9PL.
Pain Concern offer a nurse-run helpline. Tel 01227 710 402 10am-4pm Monday, Wednesday; and Friday (currently under threat of closure)
the Pain Society issue a free booklet on managing pain: SAE to 9 Bedford Square, London WC1B 3RA.
Health Information Service on 0800 665544 for details of local pain clinics/services in your area.
Action for M.E., Po Box 1302, Wells, Somerset, BA5 1YE, UK
tel. (0)1749 670799
fax. (0)1749 672561
website: www.afme.org.uk
e-mail info@afme.org.uk
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