This newsletter should keep you busy for a while - it has got to be our longest yet! Apologies if navigating it is a bit cumbersome.
It is voluntary subscription time this month. This is when we ask you to make a small contribution (£3.00) towards the running costs of the group - but only if you can afford to do so. We do not have a compulsory membership fee as we realise that many ME sufferers are on a low income. If you cannot afford to contribute, it will not affect your membership in any way.
If you are able to pay the £3.00 fee, please complete the enclosed form and return it in the envelope provided to Group Treasurer, David Johnson. Cheques or postal orders should be made payable to Leeds & District ME Group. If you pay Income Tax or Capital Gains Tax, please consider ticking the Gift Aid declaration to enable us to reclaim the tax paid on your contribution. Gift Aid raised £134 last year. Thank you for your support.
Most groups such as ours hit periodic crises where there aren't enough helpers any more to get everything done that needs doing - and we're in one at the moment! We run a lot of services now and we desperately need some more of you out there to step forward and help us out. If we don't get any more volunteers, some of our services will have to go, and the first of these is the Tape Library which will be suspended immediately unless we get someone new to take over as Acting Tape Librarian. If you think you have the time or energy to help, even in a small way, please get in touch with us to discuss what you may be able to do. To give you an idea of what we need, here are some "job descriptions" of some posts we need to fill:
The continuing ill health of our Tape Librarian means that we need someone to take this over for the time being. The tape library could be operated purely by post but ideally we'd like someone who can also bring a few tapes to meetings. You will need to keep records of who has borrowed what and make lists for the newsletter of new tapes bought. If you have a particular interest in tapes for relaxation etc then so much the better!
We need more people to serve on our sub-committee, which looks after meetings. Perhaps you might have some new ideas about meetings we could run or would be able to take on organising our therapy sessions or the women's health day. We are not really looking for someone to take overall charge of meetings (unless you especially want to!), more someone to serve as part of a team.
It would take a load off the committee to have someone who could take on the organisation of our occasional supermarket collections. These only happen once or twice a year, so it won't be an ongoing job. It will just be a case of doing a bit of liaison with the supermarket, helping to enlist volunteers, and organising them on the day. It would be very useful to have a car for this job, as you may have to pick up the money from time to time!
If you would like to help with any of these jobs, or you think you may be able to help us in some other way, please get in touch with Simon. Please volunteer if you can!
You don't have to have ME to help us! Compared with other local groups, our committee is very unusual in that we currently have no fit people involved at all. All of us have ME! This isn't our choosing - it's just that no fit people have offered to help. Out of our 300+ members, it seems likely that at least some of you will have relatives or friends who might have the time and energy to help us out. Perhaps you know someone who has recently retired and is looking round for something to do with their time, for instance. Please try to have a think and ask them! It could make all the difference between us maintaining or expanding our services and having to reduce them.
Come and join us at the West Yorkshire Playhouse Café on the third Tuesday of every month. The next four meetings will take place on Tuesday July 17th, Tuesday August 21st, Tuesday September 18th and Tuesday October 16th. The meetings start at 1pm and usually last for a couple of hours. Come late, leave early - it's up to you how long you stay. Our book and audio tape libraries are usually available for you to browse through. If you have any information you think others may be interested in - bring it along. If you have been stuck in the house for days and you feel up to a cup of tea and a chat with fellow ME sufferers, then you will be very welcome to join us. You never know who you might meet or what may happen at an ME meeting - at our May meeting some of our group members bumped into Tony Blair who was on his campaign trail! Carers are also invited to come along. If you haven't been to a meeting before you can identify us by looking for the sunflower on our table.
You are invited to join us for a summer pub lunch on Wednesday, August 1st at the Deer Park. Please keep your fingers crossed for some sunny weather as we are hoping to sit outside! If not, there is a no-smoking seating area inside. We will be there from 1pm and as with the Playhouse meetings you will be able to identify us by the sunflower on our table! If you would like to make contact with someone before coming along or you need directions, please contact Simon or Chris 
0113 255 5953.
Occupational Therapists from the NHS Leeds Fatigue Service will be talking about their work with ME/CFS on Saturday 8 September 2001 starting at 2.30pm. The venue will be Carlton Hill Friends Meeting House, 188 Woodhouse Lane, Leeds 2. Entrance is free of charge but donations will be welcome.
It's a while since we've arranged a talk as part of our programme but, as the Fatigue Service is open to all our members (assuming you can get a referral from your GP!) we thought this would be of particular interest. Do come along if you haven't yet been to the Fatigue Service and want to find out what it's all about, or if you've already done so but want to find out more about their perspective on CFS. There'll be a chance to have a drink and a chat and to ask any questions you may have.
For further directions or information about the meeting, please call Simon or Chris M. .
These classes will start in early November. Our teacher will be Rijumitra, who came to the group a few years ago to give a demonstration in meditation, which was well received.
Scientific studies have shown that meditation can be beneficial to the health and, from an ME perspective, it is something positive we can do during all those rests we have to take! The form of meditation which Rijumitra teaches derives from the Buddhist tradition but is suitable for everyone.
The classes will take place at Meanwood Community Centre, Stainbeck Avenue on Tuesdays at 1pm on the following dates: 6th November, 13th November, 27th November, and 4th December. We intend that the classes will start promptly, so please give yourself plenty of time. We know that these dates are quite a long way in the future but the classes will probably start before our next newsletter appears, so please put them in your diary now!
The classes will go on until about 2pm and then there'll be the chance to stay for a drink and a chat, so we hope you'll find the afternoons entertaining as well as relaxing.
If you would like any more information about the classes, or would just like to make contact with someone before coming along, please phone Chris M. or Simon. We can also try to fix you up with a lift if you need one.
Are you a parent with ME? Would you like to attend ME meetings but are unable to do so because you are looking after young children at home? Would you like the opportunity to meet other Mums and Dads with ME who are in the same situation as you? For some time the committee has been considering the need for meetings for our members that fall into this category. Before we consider this any further we need to establish whether or not there is a need for this service. We would particularly like to hear from you if you would be interested in coordinating the occasional meeting.
The group's Annual General Meeting was held in May. The following members agreed to stand and were re- elected to the executive committee in the following roles:
Mary Lance, who has served on our committee since 1993, stood down at the AGM. Throughout that time, she has been one of our helpline contacts, offering information and support to a great many people. Working with Women's Health Matters, she initiated and organised our popular Women's Health Days and has also served on our meetings sub-committee since its formation in 1999. Mary has shown great hospitality in opening up her home, not only for our committee meetings but also for our annual Christmas parties, occasional self-help forums and other meetings, including last years AGM. She has injected a note of humour into our committee meetings and will be greatly missed. We are pleased to report, however, that despite her departure from the committee, she will be continuing to serve as a helpline contact and to host our Christmas parties!
Ann Wells also stood down from the committee at the AGM. She gave valuable input to the committee during her year of service and we are sorry that pressure of other duties has forced her to leave. We are delighted, however, that she, like Mary, will be able to continue in her very valuable role as a helpline contact.
In February, three members of our committee went along to the psychology department of Leeds University to talk about ME to final year post-graduate clinical psychology students (who will be practicing as clinical psychologists from September). The talk centred around misconceptions about ME and the stigma which can be attached to having the illness. Feedback from the university after the visit indicated that our input had been well received by the students and that the department would like to repeat the venture in the future.
You may remember from the last newsletter that we were hoping to run a further clinic in Leeds to allow people to consult Dr Sarah Myhill locally. Unfortunately the departure of Dr Myhill's colleague Dr Hembry has meant that it is not feasible to hold any more such clinics here for the time being. It therefore seems like a good time to mention that there are many doctors throughout the country who specialise in the treatment of ME and that, if you are not able to travel, some of them do offer telephone consultations. We have information to hand on three doctors and this is summarised below.
Please note, however, that other doctors also offer their services (many advertise in Action for ME's magazine, "Interaction") and that the Leeds & District ME Group does not recommend any specific doctors. Bear in mind also that any treatment can make you feel worse as well as better and that your GP or existing consultant will probably be happier if you discuss the matter with him or her before consulting another doctor.
As we mentioned in the last issue, the shortage of research information about the physical nature of ME/CFS means that no clinically proven treatments (ie. treatments which have been shown to help a majority of sufferers) are currently available. This is why the physical treatments which are available through the NHS are usually restricted to symptomatic relief only. A treatment has to be clinically proven before funds can be provided to implement it. The feedback we receive, however (which would be referred to in medical circles as "anecdotal evidence") suggests that there are many treatments which do help a proportion of sufferers - and it is these treatments which are being offered by the doctors mentioned below.
01547 550331
Treatments offered include: dietary advice; nutritional supplements including magnesium and B12 injections; various treatments for sleep problems; anti-fungals; thyroxine; DHEA; and EPD. Costs: first consultation £100, follow up consultations £40, tests extra. The first consultation will either take place at Dr Myhill's clinic in Wales or over the telephone. For follow-ups, there is an additional option of a clinic in Nottingham. Dr Myhill is a medical advisor to Action for ME. Her booklet "Diagnosing and Treating Chronic Fatigue Syndrome" can be borrowed from our library, purchased from Dr Myhill or downloaded from her web site www.drmyhill.co.uk.
01204 366101
Treatments offered include: nutritional supplements including magnesium and B12 injections; whey proteins; various treatments for sleep problems; DHEA; hydrocortisone; thyroxine; fludrocortisone; anti-fungals; and anti-coagulants. Costs: first consultation £120, follow-up consultations £75 (although a short phone call consultation of about 15 minutes would only be £40), tests extra. Consultations will take place either at Dr Wright's clinic in Bolton or over the telephone. Dr Wright is a medical advisor for Action for ME. The present version of his booklet on CFS/ME is aimed more at doctors than patients but parts of it are accessible. It may be borrowed from our library or obtained directly from Dr Wright if you are considering consulting him.
020 7224 6777
Dr Hyam's brochure is less detailed than the information we have from the other doctors but treatments offered include: dietary advice; nutritional supplements and intravenous infusions; herbal products; amino acids; anti-fungals; desensitisation; and neurofeedback therapy. Consultations cost £125 per half hour in Harley Street or £75 per half hour at Dr Hyam's clinic in Berkshire. Telephone consultations are also possible. Tests are extra and some of them are very high tech and state of the art (with prices to match)! Dr Hyams was previously assistant clinical director of the National ME Centre in Essex.
Please note:
The therapies offered by all the doctors are tailored to the patient and will not all be relevant in all cases. Please bear in mind also that the above notes are intended as a rough guide only of what the doctors offer. Please check with them for full details and for the latest prices.
March 2001 Newsletter
©Leeds & District M.E. Group 2001
The views expressed on this website are for information only and should not be used in place of advice from appropriately qualified and experienced professionals.
The views given may not be those of the Leeds & District ME Group, the President, the Newsletter Editor, the Website Manager, or the Executive Committee.
We try to make sure all information is accurate and up to date but we cannot take responsibility for items included in this web site or guarantee their accuracy. Any use you make of this information is your own responsibility
The Leeds & District ME Group does not recommend any particular treatments or services. Before trying any new therapy you should discuss it with your doctor. A therapy which helps some people might not help you, and could possibly make you worse.
These comments also apply to information which is given at our meetings, via our helplines and by email etc.
to send an email to the person/organisation mentioned in an article.