NEWSLETTER
November 2000
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A huge thank you to everyone who paid their group subscription. Many people kindly made donations in excess of the three pound fee and a number also completed the gift aid declaration allowing the group to claim back the tax. Thank you to everyone concerned for your generosity - your support for the group is greatly appreciated.
The amount raised so far by Voluntary Subscriptions is £900, plus £130 from Gift Aid.
Thank you to the people listed below for their kind donations to group funds:
Thank you very much to Voluntary Action Leeds who provided the funding for the Women’s Health Day held in June, with a grant of £200.00.
Thank you very much to all the volunteers who helped at the following supermarket collections:
The group has a large collection of bric a brac and new knitted toys which we want to sell to raise group funds. We would like to hire a couple of tables at a table top sale to sell this items.
Do you know of a school, church or community centre in the Leeds area which is holding a table top sale? If you hear of a suitable event (it doesn’t matter if it is this year or the next) please contact Chris M. - 0113 266 1150.
Jenny Thompson has recently left the committee but will continue to work for the group as a Helpline Contact. Thank you very much to Jenny for her contribution to the committee during the past few years. We are pleased to welcome Tamsin and David as our two new committee members.
Advice on holidays for people with disabilities is available from the following sources:
RADAR - 020 7250 3222 - help and advice on all aspects of holiday travel for the disabled.
Holiday Care Service - 01293 774535 - advice and information for travellers with disabilities, including advice on obtaining financial assistance for those "under severe financial pressure". This organisation also produces directories of locally available respite care.
Disabled Living Foundation- 020 7289 6111 - holiday information including details of specialist travel agents.
For more sources of holiday information, send for the "Travel and Holidays" Information Sheet from the ME Association - 01375 642466.
There is a mobile service delivering books and other library services to the housebound in Leeds. Unfortunately there is a long waiting list for this service but if you are housebound and unable to get someone to go to the library for you, it could be worth putting your name down. 0113 214 3331.
Here are some places to try if you are having trouble with pain:
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) to College of Health, Saint Margaret’s House, 21 Old Ford Road, London E2 9PL.
Contact Health Information Service on 0800 665544 for details of local pain clinics/services in your area.
The Pain Society issue a free booklet on managing pain. Send a SAE to 9 Bedford Square, London WC1B 3RA.
(Information from Action for ME)
In our March newsletter we mentioned that very few local MPs had responded to the letter we sent them last year about the Welfare Reform Bill. We have now received a belated response from Yvette Cooper (Pontefract and Castleford) who is Parliamentary Under Secretary of State for Health.
Ms Cooper suffered with ME herself for three years before making what appears to be a complete recovery. Unfortunately she did not directly address the points raised in our letter but she did enclose two fact sheets on ME, one produced by the Department of Health and the other by the Department of Social Security. With the outcome of the Chief Medical Officer’s Working Group on CFS/ME still pending, these have nothing new to say , but their tone is encouraging.
The information from the Department of Health, for instance, cites "biochemical and immunological disorders" and "various viruses including Epstein Barr" as possible causes of the condition. Refreshingly, there is no mention of any possible psychiatric causes. Both of the fact sheets contain statements which might be of value when appealing against decisions of the DSS or when dealing with official bodies. If you think they may be of use to you, phone Simon to find out more about them or write to him at 47 Birkdale Drive, Leeds LS17 7RU, enclosing an SAE and he will send you copies.
Thank you to everyone who responded to our appeal in the last newsletter for information on coping with the menopause. Most people who contacted us recommended progesterone cream. The group has copies of a very useful booklet about natural progesterone cream (from one of the companies selling progesterone cream) which may be of interest to anyone going through the menopause or who sufferers with PMS.
The booklet - "Natural Progesterone and Women's Health - A Guide to Understanding and Controlling PMS/PMT, Menopause, Osteoporosis and Fertility" can be obtained by sending an A5 SAE (27 pence stamp) to Chris M., 47 Birkdale Drive, Leeds LS17 7RU.
One of our members is interested in contacting people who have Candida problems and have consulted the Nutritionist Erica White in Essex. The member concerned has been on her programme for three months. They would also like to hear from anyone who is considering consulting the Osteopath Raymond Perrin in Manchester as they have been receiving his treatment for a considerable time and have found that of benefit also. If you would like to get in touch please contact Simon, 47 Birkdale Drive, Leeds LS17 7RU who will pass your information on.
New sessions for spiritual healing have recently started in the Hyde Park area of Leeds. Healing is given by members of the National Federation Of Spiritual Healing. The sessions are free of charge and are held (between 12.00 and 3pm) at All Hallows Community Hall and Café, Regent Terrace, Leeds LS6 1NP.
We have recently had some enquires about mobile hairdressers. A number of group members have used the following hairdresser, who is based in the north Leeds area - Sue Strange, 0113 2813 845.
This is the only recommendation we have received but obviously there will be many more good mobile hairdressers in Leeds and Wakefield. We would like to hear from you if you have someone to recommend. Please pass on your information to a committee member at a Playhouse meeting, via one of the Helpline numbers or write to Jane A.
The following information may be of use to anyone with ME (or with a partner with ME) who is considering starting a family or who already has a young child.
This is for people with ME and their partners who are thinking of having a baby, who are pregnant or who have a baby or toddler. It provides a list of contacts, regular newsletters, support and advice. Annual subscription £10.00. For details see the website, www.pregnet.org
This is a new group for women with disabilities who are considering having a child (or who are already parents) and have concerns about the effects pregnancy would have on their disability.
The group will provide the opportunity to meet others in a similar situation or to meet those who have had children. They will have speakers and discussions about the needs of women who are, or who are considering becoming parents. Crèche, transport and refreshments provided.
For more information please contact Elizabeth Davenport, Women’s Health Matters, Bridge House, Balm Road, Hunslet, Leeds, e-mail womens.health@virgin.net
Foresight is a national charity for preconceptual care. It promotes the best possible health of both parents before trying to conceive, to reduce the risk of handicap and to promote healthy infants. Although based in Surrey, local branch meetings of Foresight take place throughout the country, providing information and support.
28 The Paddock, Godalming, Surrey GU7 1XD, 01483 427839.
Dr Charles Shepherd of the ME Association has been collecting information on rude, hostile and disbelieving doctors. It was reported by Dr Shepherd in the June issue of "Perspectives" that "a common theme running through a number of replies was that some hospital doctors appear to believe that their treatment regime is highly effective because patients don’t bother returning for their follow up appointments!" This illustrates quite clearly that it is important to let your views of bad and ineffective treatment be known to hospital management.
Beanstalk will deliver a large range of organic produce to your home. There is no delivery charge but the minimum order is £10. They sell fresh food and veg, dairy products, bread and cakes (including 100% rye bread) meat, fish from unpolluted waters, and a range of the sort of things you might find in a health food shop. Email h@beanstalkorganix.demon.co.uk
July 2000 Newsletter