HELLO
MEETINGS IN LEEDS
RECENT MEETINGS
COMMITTEE NEWS
USEFUL NUMBERS LIST
GUIDELINES ON LIVING WITH ME
THANK YOU TO OUR SPONSORS
RECENT FUND-RAISING
SUPERMARKET COLLECTIONS
DEPARTMENT OF HEALTH WORKING PARTY ON M.E.
CAMPAIGNING ISSUES- WE NEED YOUR HELP!
TREAT YOURSELF !
BEAT THE MILLENNIUM BUG
FREE DIAL DIRECTORY
MENU IDEAS
JULY NEWSLETTER
Welcome to the first newsletter of 1999. Spring is on the way, a time when I think we all start to feel a little more positive about life in general and as the weather improves quite a number of ME sufferers do seem to feel better.
We have recently heard of some vast improvements in the health of some of our members which gives us all hope that some better days may be around the corner for us too. If you have some positive news please share it with the rest of the group- you may be able to help other members with your tips and stories of improvement.
Please send your information to Jane Ashworth (address at end of newsletter) or contact one of the Helpline numbers.
Due to members' preference for afternoon meetings (questionnaire results) during the last quarter we held all the meetings in the afternoon. However as there was very poor attendance at most of these meetings we are now returning to mainly evening meetings.
One of the ideas we are considering for the future is to have more meetings in members' homes rather than halls, community centres, etc. We hope this will enable us to get to different areas of Leeds where we cannot currently meet as there are no suitable venues. We would particularly like to find a home to meet at in the Headingley area.
If you would consider inviting us to your home for a meeting, we need somewhere big enough to fit in about fifteen people, please contact Simon who will be able to give you more details.
We would also like suggestions of pubs or cafés that may be suitable for meetings. Simon 0113 266 1150.
A sub-committee has been formed to discuss and plan meetings from July onwards. This committee will also be looking at the possibility of the group running fortnightly classes, at a nominal fee, in one of the following: Meditation, Yoga, Alexander Technique, Tai Chi, etc. If we decide to run the classes they will be based in Leeds and probably be on a weekday afternoon.
If you would be genuinely interested in attending a class like this please could you give one of our Helpline contacts a call so that we can assess the interest. If no one calls we will know there is no point in the committee organising the scheme. If you do call it may help if you let us know if you have a particular preference for the type of class you would like to attend.
We would also like to hear of your experiences of trying yoga, etc. and would be very interested to hear from anyone who knows of a yoga teacher who has experience of teaching ME sufferers. If you would prefer to send in your information by letter please write to Jane Ashworth, address at end of newsletter.
At a meeting last November we were joined by two former ME sufferers who gave very interesting accounts of how they had partially - or in one case completely - recovered from ME.
Our recovered speaker Jan Brumfitt very kindly recorded her speech on to tape.
From the date of the group Annual General Meeting in May three very hardworking, reliable and valued members of the committee are leaving their posts.
Diane Heald's, (Group Secretary) contribution to the group has been enormous. She has been a committee member since 1993 and has taken on many roles including Helpline contact, librarian, fund-raiser and many more, too numerous to mention here. Diane also played a major part in successfully guiding the group towards becoming an independent charity in 1997.
Moyra Andrews,(Membership Secretary) too has been an extremely hardworking committee member. She has revolutionised the role of membership secretary, creating an efficient and fully computerised service. She too has contributed to the committee in many different ways and has always been full of ideas for improving our services.
Steve Theobold began organising and chairing Wakefield meetings two years ago, allowing members in different parts of the district to attend meetings nearer to home. He has also campaigned for ME sufferers through contact with the Wakefield Community Health Council and local MPs. We would like to thank all these departing committee members for their hard work and commitment to the group.
Their friends who remain on the committee will miss them being part of the team but agree that they deserve a break. To Diane, Moyra and Steve, on behalf of the membership, thank you for all you have done for the group.
There is now an updated to Useful Numbers List. If you have any more suggestions of numbers to add to the list please contact the Helpline or write to Moyra Andrews at 12 Kings Lea, Ossett, Wakefield WF5 8RY.
Guidelines on Living with M.E. is a new document which will be sent out as part of the welcome package received by all new members. As it is a new document that we felt had some information which the existing membership may find helpful, you lucky people have all been sent a copy too!
We would like to express our thanks to the new sponsors of this newsletter. The Nationwide Foundation will cover all costs involved in the production and distribution of the newsletter for the next twelve months. We are very grateful for their support. Our thanks also go to Diane Heald who made the successful application for this funding.
Donations
Thank you to everyone concerned for your kind donations.
Box Collections
Thank you to all the following businesses who have our collection boxes. Thank you also to the group members who organised and collected the boxes.
Out thanks go to Asda and Homebase who have both given us permission to make coin collections at one of their respective stores during the next few months.
Please help if you can by volunteering to collect. This will simply involve sitting down for an hour and holding a tin.
The collections are taking place on the following dates:
All money raised will go towards group running costs.
This working party has been set up by the Department of Health to formulate guidelines for the treatment of ME/CFS. Unfortunately the information that we were originally given about this working party, and which we reported in the last newsletter, has turned out to be unduly optimistic. The "core group" (which will formulate the guidelines) appears to be biased in its composition towards the psychiatric point of view, and there is therefore concern that the guidelines which it produces may not be helpful.
On the more positive side, however, the other two groups which form the working party, one of them the so-called "reference group" (to which the core group will refer) and the other a group which will deal with the problems of children with ME/CFS, both have a much more balanced composition and more accurately reflect the varying viewpoints about the condition which exist in the medical profession.
Something else from which we can take heart is that Action for ME will be organising a number of meetings throughout the country in which people from local groups will be able to meet with the representatives from the working party to be briefed on how the guidelines are developing and to give some feedback. One of these meetings will take place in Leeds and so we look forward to letting them know what we think!
We are continuing our efforts to bring the problems facing our members to the attention of the powers that be, both locally and nationally.
Following the Wakefield Community Health Council's campaign on our behalf last year, a reply has finally been received from the Pinderfields Hospital Trust. Unfortunately the reply is not encouraging, but the Community Health Council will continue to undertake consultations with them on our behalf. We have also written to Wakefield Health Authority ourselves as part of their Health Action Zone consultation exercise.
On the parliamentary front, Steve Theobold from our committee, has met with David Hinchcliffe MP and, together with group member Sue Heppenstall, with Bill O'Brien MP. Both of these MPs have expressed their willingness to help us.
What we really need to help push things forward in Wakefield, both through the MPs and through the Community Health Council are more case histories from our members. So, if you live in the WF postcode area, and have a tale to tell about any problems you may have had with the NHS or the DSS, please get in touch. Telephone Simon on 0113 266 1150. Please do this even if you have already told us about these problems, as we may not have a note of the full details. We expect that at least 50% of you will have something to say, so please pass it on to us! Unless we have more information, we will not be able to get the improvements which are needed. Please note that no names will be passed on to anyone without express permission!
Problems with the NHS are most severe in Wakefield, where there are no specialist services, but things in Leeds are not all that much better. We have however been doing our best here too. One of our members David Melville, has met with John Battle MP on our behalf, and we have written to the Leeds Fatigue Clinic suggesting that we may be able to work together with them to improve and expand on their services. A positive response has been received to this letter and we hope that we shall be meeting with them in the near future.
We have also sent a response to the DSS as part of the consultation process for their latest welfare reform document, Support for Disabled People.
Since your energy is so limited as an ME sufferer, often when you have any to spare you end up spending it on doing things you feel you should do rather than things you enjoy. It is important however to treat yourself occasionally. Just because you have ME it doesn't mean you can no longer pamper yourself or treat yourself to something that will cheer you up and make you feel more positive.
Here are some ideas for you:
These are just a few examples the committee managed to come up with. Please let us have your suggestions for special treats and we will print them in the next newsletter. We would also like your tips on coping with sleep problems. Please let us know how you cope with this major problem for ME sufferers. Please send your ideas to Jane A.
Action 2000, the government agency set up to deal with the millennium bug has compiled an eight page pamphlet with tips on how to safeguard your home explaining the simple steps to take to prevent problems. Telephone Action 2000, 0845 6012000 to obtain a copy of the pamphlet.
DIAL at Wakefield have recently produced a 'Resource Directory for Disabled People, their Families, Friends and Carers'. It is quite a comprehensive book, approximately 200 pages long. To obtain a free copy contact the resource centre at the following address; Highfield House Resource Centre, Love Lane, Castleford WF10 4RT, Tel: 01977 723933.
Both Tesco and Sainsburys now have organic sections in their stores, particularly the larger ones.
Tesco seem to be using more corn starch in their products rather than wheat, (e.g. Tesco sweet and sour quorn) great news for everyone with a wheat allergy. A number of their new ready meals are also wheat and dairy free e.g. Chicken with a honey and mustard glaze.
The new Sainsbury's store at Moortown, Leeds has some dairy and wheat free products in their organic section (aisle 33) e.g. Doves Farm lemon cookies (gluten free,) two varieties of soup by Suma (wheat and dairy free,) and they also sell Orgran corn pasta. The Colton store also stocks many of these products.
Asda For anyone who uses soya milk Asda's own soya milk seems to be much cheaper than anyone else's at 65p per litre.
Sharwoods lemongrass and ginger stir-fry sauce is delicious and wheat and dairy free, available from most supermarkets.
From the feedback we have had, these menu ideas really help people. If your diet is restricted, (many ME sufferers cannot tolerate wheat and or dairy products,) it can be a nightmare thinking of new ideas for meals. If you have any tips which you think may help others please write to Jane A.
The Village Bakery, Melmerby Ltd., Melmerby, Penrith, Cumbria CA10 1HE, 01768 881515
We mentioned this company in the last newsletter and now have some feedback from people who have ordered items from them. Although the Christmas cake was quite nice it did have wheat in the candied peel so wasn't strictly wheat free. The Carrot cake and the Pecan and Almond cake however are both entirely wheat free and very nice.
For more menu ideas see our Menu Ideas page.
Please send items for inclusion in the July newsletter by May 17th.
We like to acknowledge members' contribution to the newsletter. However if you have information to send us but would prefer your name not to appear in print, please let us know this when writing.
November '98 Newsletter