NEWSLETTER
November '99
This edition of the newsletter is sponsored byThe Nationwide Foundation
For the next couple of months our fortnightly Chi Kung classes for members will be continuing. If you haven't already joined us at one of the classes, it is not too late as each class is self-sufficient. The cost per person for each class is 50 pence. There is the chance to have a drink and a chat after each class if you wish to do so.
We asked a couple of group members who have attended the first two Chi Kung classes to let us know how they felt they were going. This is what they said:
"There has been much publicity about the benefits of Chi Kung for ME sufferers. 1 am happy to say that I am already finding my energy levels increasing as a result of attending Chi Kung classes."
Margaret Mortimer
"Although the classes have only been running for a short time, I am sure in the long term they will be beneficial. Chi Kung is nice and easy for people with ME to do and something you could continue to do at home. Very enjoyable."
Cathy
Thank you to Margaret and Cathy for their comments. For further information about the classes, please contact Chris M. or Helen C..
Classes are held at Headingley Community Centre and will take place at 2pm on the following dates:
Headingley Community Centre is on North Lane, opposite the Lounge cinema.
We are hoping to continue with new classes of some kind in the Spring/Summer - details will be in the March newsletter.
You may have seen recent media reports about an enzyme called Enada (NADH), which has been used in the treatment of ME. This is not a clinically proved treatment but some doctors have reported encouraging results. Enada is now available in many health food shops at the cost of £1 per tablet.
One of our members, Gordon Painter, has discovered that it can be purchased from America at less than half the price. Contact Pro Health on 001 800 366 6056 (calls charged at international rates) or visit their web site at www.immunesupport.com
At the time of writing Pro Health have a special offer on - four boxes for the price of three, so it may be worth asking if the offer is still running when you place your order. It is advisable not to send for more than four boxes of Enada at a time, as there are reports of large orders being charged excess import duty.
If you are trying Enada it would be nice to hear your experiences so we can share the information with other group members. Please pass on your information to Simon, Mary or Jenny via the Helpline.
Coin Collection at Homebase, Moor Allerton Centre - £146.88
Thank you very much to all our collectors and collection organiser, Tim Cogan. Thanks also go to Homebase and their customers.
Collection Boxes
Donations
Our thanks to all the above for their generosity.
Diane Heald will be organising a raffle to raise group funds at The Kingston Unity Friendly Society, Rosebud Lodge Christmas party. Please can you help out by donating items for prizes. We already have toiletries and cuddly toys - bottles of alcohol would probably be the best idea! Please bring donations along to group meetings or Chi Kung classes. We need to receive items by the first week in December - thank you.
Knitted toys will be available for sale at forthcoming Chi Kung classes, handy for last minute Christmas presents for young children - although we have sold most of them to adults so far! The lady who makes them for us is running out of supplies, so we would pleased to receive donations of double knitting wool to pass on to her. Please bring the wool along to any of the group get-togethers.
We have quite a large stock of items which would be suitable to sell at either a car boot sale or a jumble sale. Would you or anyone you know be willing to arrange a stall to sell the items to raise money for group funds? If you think you could help or would be willing to do so when the car boot season starts next Spring, please contact Simon, 0113 266 1150.
More wheat-free products seem to be available now at various health food shops and supermarkets.
Tesco sell a white sliced loaf made with rice flour, although this is expensive at over £3 per loaf. They also have a new range of organic wheat-free pork sausages and wheat-free chicken burgers - find them in the freezer section.
Sainsburys (at Moor Allerton, need to check your local store for availability) now stock a Russian rye bread (Rossisky) made by the Village Bakery. Unfortunately they don't have large deliveries of it so it can take a few visits before you find it in stock. If you do enjoy the bread, please let Sainsburys know as the more people who ask for this, or other wheat free items, hopefully the more likely they are to increase stock levels. This particular bread is very popular amongst our members who have tried it already - it seems to be the best alternative to "normal" bread.
Beano (in Leeds city centre) They also sell the Village Bakery bread mentioned above, delivered on Tuesdays and available after 11am. Beano sell a wide range of health foods and alternative products and are well worth a visit if you are able to get into the city centre. They also have a delivery service; to find out more phone 0113 2435737.
Headingley Health Food Shop This shop has a good range of wheat and dairy free foods e.g. cakes, vegeburgers etc. It is quite close to Headingley Community Centre so you could call in after attending a group Chi Kung class!
Please send any similar tips you may have to Jane.
As mentioned in the last newsletter, Leeds Fatigue Unit held a forum in July to allow clinic users the opportunity to give feedback on the services they provide. The meeting was attended by representatives of the committee. As a result of the forum, a carers group has been set up to provide support for the carers of patients at the clinic.
The next meeting of the Carers Group is in the Seminar Room, Gledhow Wing, St James's Hospital, 1.30-3.30pm on November 6th.
For further information contact Angela Murphy, 0113 206 5127.
In addition to the GP seminar reported in the last newsletter, the Fatigue Clinic are now providing training in CFS to new doctors at Seacroft and St James's.
The staff at the clinic are hoping to develop and extend the services they provide to patients. To try and get funding for these developments the staff have to demonstrate a need for these services. If you have attended the clinic in the past year, you may be able to help. The clinic would like to hear from you, in writing, if you have any positive feedback on the treatment you have received. They tend to hear from people who have negative comments but not from those of you who have found their treatment beneficial! If you could spare the time to write to the clinic, they would be pleased to hear from you.
Please send your letters to
Sue Pemberton, CFS Services, Roundhay Wing, St James's Hospital, Beckett Street, Leeds LS9 7TFThe Leeds & District ME Group have sent a letter to the Leeds Community Health Council to ask for their help in campaigning for increased funding for the Fatigue Clinic and for a general improvement in NHS services for ME/CFS in Leeds.
A recent edition of "Proof" magazine (Summer 1999) mentions a study in which a combination of chinese herbs was used to treat Irritable Bowel Syndrome. Apparently 45% of patients were cured, 42% were markedly improved and even the other 13% showed some improvement. This sounds rather too good to be true but it might be worth consideration if IBS is part of your problem. Telephone Simon, 0113 266 1150 if you'd like to know more. Bear in mind that chinese herbs can be very powerful. If you decide to try them, we recommend that you do so under the guidance of a qualified practitioner.
"Proof" magazine comes out quarterly and contains details of various studies into which alternative therapies help which symptoms and conditions - information which it is very difficult to obtain else where. Phone 020 7354 4592 for details of "Proof"' (and also its sister magazine, "What Doctors Don't Tell You").
"Sleep Times" magazine is a monthly publication. It is a 12 page newsletter produced by and for people with sleep disorders. It reviews all the current developments in the world of sleep, e.g. reports on the latest research findings, conventional and alternative therapy solutions to sleep disturbance. If you are a reader of Interaction you can subscribe for the introductory rate of £19.97 (£10 saving). To subscribe contact
Sleep Times, PO Box 2216, Reading, Berks, RG4 8YBNHS Direct is now available in Leeds and Wakefield. This is a 24 hour confidential helpline. It is staffed by nurses and trained operators who will give you immediate information and advice on what to do and what not to do about worrying health problems. If they think you have something more serious they will advise you what to do or connect you to 999, if they think you need an ambulance. They also have details of other relevant health information services, late night pharmacists and out of hours dentists.
NHS DIRECT, 0845 4647 (24 hours a day). Make sure you have the number next to your phone.
Wakefield Community Health Council is hoping to produce an awareness booklet which will contain experience of thyroid diagnosis, both good and bad and hopefully encourage better and earlier diagnosis of thyroid disorders. Names and addresses will not be included in the pamphlet. They will just ask permission to use certain paragraphs.
If anyone has any relevant information to pass on please email or write to
Jeanette Cumberworth, Clerical Officer, Wakefield CHC, Grosvenor House, 16-18 Union Street, Wakefield WF1 3AEPhone: 01924 362509
From the Needs Must campaign:
"The law states that local authorities should provide certain services if they assess people as needing them. However since March 1997, local authorities have had greater freedom to make decisions on what support services they provide. Decisions are now based as much on the money available as on personal need. Needs Must is a group of organisations campaigning to restore people's rights to community care. We want to raise public awareness of this crisis in social service provision. We are gathering information from people who have been experiencing difficulties because their services have been cut and we would like to hear your story."
If you have relevant information for the Needs Must campaign you will need to complete their questionnaire.
Before making policy changes which will affect disabled members of the community, Leeds City Council now consults a group of disabled residents. One of our members has recently attended one of these meetings and felt it provided a good opportunity to put across the needs of ME sufferers.
The council consults residents on a wide range of issues including transport, leisure centres, libraries, museums etc. Transport to the meetings and refreshments are provided free of charge.
If you are interested in taking part in future consultations, please email Gill Crawshaw. You can also contact her by phone, 0113 247 4728 or fax 0113 247 4768.
Care and Repair is a voluntary organisation in Leeds which helps the elderly on low incomes and the disabled to improve their homes. The charity provides a handyman service and they can also help people apply to the council for home improvement grants. Care & Repair can be contacted on 0113 240 6009.
"Crystal Spring" is an effective natural deodorant shaped from crystallised mineral salts. It is hypoallergenic, fragrance-free and contains no propellants, cover up fragrances, alcohol etc. It has not been tested on animals. As a number of ME sufferers do have problems with allergic reactions to certain toiletries, this could be a good option. Also, many deodorants contain aluminium salts thought by some to suppress the immune system. One of our members has been using this product and finds it effective. It costs £4.95 (post free) but it is very economical, lasting many months. "Crystal Spring" deodorant is available from
Crystal Spring Ltd 47 Hillcrest Road, Newhaven, East Sussex BN9 9EEPhone: 01273 612477
Fax: 01273 612478
Pollution of any kind can have a detrimental effect on the health of ME sufferers. As many of us spend a large amount of our time at home it is important to ensure our home environment is as pollution free as possible. Did you know that one of the most effective ways of reducing chemicals from the air is through houseplants? The use of plants in this way has been shown to reduce fatigue, headaches and nausea. This doesn't mean you have to splash out on expensive exotic plants - one of the most effective plants in reducing pollution is the humble spider plant. If you have a friend with a spider plant you could ask them to give you a cutting the next time the mother plant produces a baby! Another good thing about these plants is that they will grow in almost any conditions, so even those of you who normally kill off plants may be able to cope with a spider plant.
Chris M. and Simon, would like to thank all those of you who sent cards and good wishes on the occasion of their recent wedding. The big day went very well and they very much appreciate your kind thoughts.
If you change your address please let us know so that you will continue to receive the newsletter.
Thank you to everyone who contributed items for this newsletter. Please send items for inclusion in the March newsletter, by January 16th 2000.
July '99 Newsletter