NEWSLETTER
JULY 2002
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The dates for our forthcoming group meetings are as follows: Tuesday July 16th, Tuesday August 20th, Tuesday September 17th and Tuesday October 15th. The meetings start at 1pm and usually last for a couple of hours. You may join us for as long or as short a time as you wish during this time. We meet in the West Yorkshire Playhouse Café and we will have a sunflower on our table so that you can identify us. Meetings are very informal and give you the opportunity to meet fellow group members and browse through and borrow books and/or tapes from our libraries.
If you would like more information about these meetings or would just like to make contact with someone before coming along then please contact David B. , Pete Clavane or Mary Lance .
Our evening social meetings also take place at the West Yorkshire Playhouse Café/Bar. We meet on the first Monday of the month between 7.45pm and 9.45pm. We can be identified by the sunflower on our table. The next set of meetings will take place on the following dates: Monday August 5th, Monday September 2nd, Monday October 7th and Monday November 4th.
If you would like any further information about these meetings, or would like to make contact with someone before coming along, please contact Tamsin or David R .
In August we are having an extra get together - a pub lunch. This annual event is usually very popular and we are hoping that as in previous years we will have a nice sunny day. This year we shall be meeting, on Thursday August 1st, at the Roundhay Fox. This is on Prince's Avenue, Roundhay, Leeds (opposite the Canal Gardens). We shall be there from 12 midday onwards (probably for a couple of hours) so you may join us for as long or as short a time as you wish. Weather permitting, we shall be sitting in the outside courtyard at the back of the pub (where the sign says diners only). Food cannot be taken out to the tables at the front of the pub. If the weather is bad obviously we shall have to sit inside. We shall have the customary sunflower on our table so that you can identify us. If you require any further information about this meeting, please contact Chris M. or Simon .
In association with Women's Health Matters, we are planning another healing afternoon, for women only. It will take place in the Congreve Room at the West Yorkshire Playhouse on Monday September 9th, from 1pm to 4pm. The afternoon will start with a relaxation session, followed by refreshments and a chance to chat. Then you can try various therapies for yourself. Therapies include healing and massage. The whole afternoon is completely FREE and very relaxing. You may bring a friend if you wish. For further details contact Tamsin .
This Autumn we have arranged an afternoon of healing, which is open to all members. This will take place on Thursday 17th October, 1pm - 3pm, the Priestley Room at the West Yorkshire Playhouse.
Margaret and Trevor Bellamy will give us a short talk on healing and introduce us to a meditation we can use to help heal ourselves. They will then give a demonstration of healing, after which we can buy refreshments in the Playhouse café and then return for individual healing.
To get to the Priestley Room, use the main entrance of the Playhouse, turn right and go down the stairs, you'll then be facing the door.
We will be sitting in chairs for healing sessions: if you need to lie down for a rest, bring a cushion and a blanket.
If you have any enquiries about this event, Please contact Helen C. .
IMPORTANT: Please remember, that when you are attending a group get together do not wear perfume after-shave or hairspray. A number of our members suffer with multiple chemical sensitivities and can become extremely ill when exposed to even small amounts of perfume. It is very unfair if they are unable to join us because other people are wearing these products. It is important to remind guests that you are bringing along to events (theatre etc.) also to abide by these guidelines. Thank you for your support.
If you are unable to get to group meetings (or even if you are) but would like to make contact with other group members, perhaps you would like to join our Friendship List. This is a list of fellow group members who would like to make contact with others in the group. If you decide to join the list you will be asked to complete a form giving a few basic details about yourself. You only need to complete the sections you want to. These details will then be included on the Friendship list. With every Newsletter an updated Friendship List is mailed to those on the list. You will then be able to see if there are others on the list in your area, age range or share your interests. It is then up to you to make contact with anyone you would like to, or maybe someone will get in touch with you. You can decide how you want to be contacted eg by phone, letter or e-mail. It is just another way to get in touch with others who like you may be feeling isolated by their illness or who just want to make a new friend and maybe swap information about hobbies, ME etc. If you would like to join the Friendship List or would like more information about it, please contact the membership secretary .
If you are already on the Friendship List it is important to keep your details up to date. Please contact the membership secretary if you would like to change or update your details, or you wish to be removed from the list. You will need to do this by the deadline for the next newsletter, which is September 17th.
Aquamarine is a new national socialising network for people with ME aged 20-39 who want to share friendship, experiences and ideas. Members will receive a biannual updated contact list and can be in touch with each other via phone, text or letter. If you're interested in receiving further information or joining the network, please send your name and address to: Aquamarine, Box No. 3763, AFME, PO Box 1302, Wells, Somerset BA5 1YE .
Information from "InterAction" the AFME journal.
Thank you to everyone who gave us information and feedback about treatments/ therapies tried and details of the therapists/ doctors concerned, both good and bad. The most frequently mentioned complementary therapies which were felt to have been beneficial were homoeopathy and cranial osteopathy and it was generally found that almost all of the complementary/alternative practitioners cited had a good understanding of the nature of ME. Indeed, some of these had had ME themselves or had close family with the condition. Some therapists were willing to reduce their charges for patients on benefit. The Leeds Hospital Fund was mentioned by several members as being the only way they could have afforded to try therapies, although not all therapies qualify for these payments. It should be noted that in certain cases acupuncture, homoeopathy and osteopathy are available on the NHS in this area. A GP referral is required and further details will be given in the next newsletter.
Several members gave full and frank accounts of their consultations and dealings with doctors both private and NHS. Sadly it seems that there is still widespread ignorance about ME amongst many medical staff at hospital and GP level, but there are also some enlightened, informed and sympathetic doctors around. Unfortunately, some of these can only be consulted privately and the Leeds Hospital Fund will only pay towards consultations with doctors of consultant status.
Most of the feedback received about the Leeds Chronic Fatigue Service has been positive, in particular regarding the eight week energy management course. People have asked us to mention that the advice given is based on pacing, NOT on graded exercise. We know that many of our severely affected members are reluctant to consult the service but we have now received positive feedback from several such patients. We have a testimonial about the service written by a severely affected patient. If you would like a copy of this, please send a large stamped (first class stamp) addressed envelope to Simon at 47 Birkdale Drive, Leeds LS17 7RU or phone him if you would like a chat about the work of the service.
The Leeds Hospital Fund can be contacted on but bear in mind the following extract from their terms and conditions:
"A contributor or dependent child will not be entitled to benefit in respect of any ailment or health condition, which arose prior to enrolment with the Fund or during the relevant qualifying period, regardless of when any treatment or service is given. This exclusion does not apply to the Optical or Dental benefits."
Please continue to send in feedback on your experiences about doctors and therapists who may be consulted by people in our area.
Action for ME are organising a postcard campaign to help improve NHS services for ME/CFS in the wake of the Chief Medical Officer's Report. The idea is for people with ME to send in a postcard to their local Primary Care Trust, asking what plans are in hand to improve or provide treatment.
Action for ME are providing pre-printed postcards. All you have to do is fill in your name and address, how long you have had ME/CFS, and the name of your local Primary Care Trust (PCT).
If you would like to help by sending in a postcard, visit Action for ME at www.afme.org.uk
Some therapists are using electronic "bioresonance" devices in conjunction with homoeopathic remedies and/or flower essences. Our helpline contacts have recently received several calls relating to these devices and we thought it might be useful to publish the following opinions regarding the pros and cons of such therapy:
"I find a blend of traditional homoeopathic case-taking and analysis, subsequent bioresonance and intuition to be highly effective and fascinating . . . Using the homoeopathic software can be a recipe for disaster when the practitioner has little internalised knowledge. The measurements are by their nature very 'snapshot' and mercurial. 'Diagnosis' may cause unjustified alarm." - Stuart McOwan (Minerva Homoeopathic Books)
"The accuracy of such devices and systems derives in large part from the abilities of the operator. In any case, they are supplementary and not a substitute for personal dialogue with clients." - 'Flower Essence Repertory' by Patricia Kaminski and Richard Katz
If you have any concerns about such therapies, please phone our Helpline contacts Jenny Thompson or Simon .
A concise pamphlet has been prepared by the Tymes Trust to give doctors, teachers, other professionals and relatives a speedy overview of the CMO working Group recommendations on children and young people. Copies are 50 pence each. Send a large sae to Tymes Trust, PO BOX 4347, Stock, Ingatestone, Essex CM4 9TE.
Information from Perspectives Spring 2002 (the ME Association magazine). ME Association, 4 Top Angel, Buckingham Industrial Park, Buckingham MK18 1TH .
A new national Helpline for families and carers of children with ill health disabilities, or special needs has been launched by the organisation Contact a Family. Opening hours are 10am to 4pm, Monday to Friday. Freephone .
Information from The ME Association (contact details above)
There is a new support group in Leeds for disabled parents. This provides the opportunity to meet with other disabled parents and share experiences and problems. Crèche, transport, signer and refreshments provided. For more information contact: Elizabeth Davenport, Women's Health Matters, Bridge House, Balm Road, Hunslet, Leeds
After nine years service, our Group Chairman, Simon is leaving the committee. During this time Simon has taken on numerous roles. He has been newsletter editor, membership secretary and telephone contact, to name a few. In 1997 he was part of the team that were involved in the group's transition from affiliated support group to registered charity. Since then Simon has been Chairman of the group.
It is very nice to have this opportunity to say a big thank you to him on behalf of all the members of Leeds & District ME Group and to wish him all the very best for the future.
We shall certainly miss Simon at our committee meetings. In fact when we heard he was leaving the committee we did feel the only way we could manage without him was by having him cloned! Throughout his time on the committee, Simon has carried out his work with both sensitivity and humour and he will be extremely difficult to replace. He has also helped numerous people over the years in his role as Helpline contact. We are therefore very pleased to say that although Simon will no longer be a committee member he will be continuing as a Helpline contact.
Julie Whittle, who has been Group Secretary for the past two years, has also left the committee. We would like to thank Julie for all her hard work for the group and wish her all the best for the future. We are pleased to say that Anne Thackray has agreed to take over from Julie and will be the new Group Secretary with immediate effect. Ann Wells is also resigning from her role as Helpline contact. We would like to thank Ann for her valuable contribution to the Helpline team and send her our best wishes for the future. We are pleased to say that Ann will continue to give talks about ME on behalf of the group.
We would also like to send our best wishes to Tim Dewhurst, who has been on the committee for a short while. Tim is moving out of the area - we wish him improved health and best wishes for the future
As usual, we are in need of extra help in running the group. Please see the yellow flyer enclosed with this mailing which gives more details of the kind of help we need.
The group produces both leaflets and A5 posters that give details of the group and the services it provides. We are always keen to promote our services so that people who need information about ME know where to find us. If you know of a suitable venue to display our posters or leaflets (eg. GP's surgery, local library, college, school, dentists surgery, church hall, health food shop etc.) please contact the membership secretary who will be able to supply you with posters and/or leaflets.
Thank you to everyone who helped out with the collections. Your support is greatly appreciated.
Thank you to everyone who sold and bought cards in the Castleford area.
West Yorkshire Playhouse's Cyber Café has reopened as a UK online centre and can be booked for a range of different sessions or courses. Come and find out about computers and the internet in the friendly atmosphere of the Playhouse - and it's all completely free! For more information please contact Mark Broadhead at the Playhouse .
The "food list" produced by the Coeliac Society is very helpful for anyone on a gluten free (not just wheat free) diet. They will require a signed doctor's note confirming you have ME before allowing you to buy their publications. The "Food List" is updated each year (although monthly updates are available via email) and it gives detailed advice on which foods can be eaten, including supermarkets' own brands. They also supply "Living on a Gluten Free Diet". For further information contact: the Coeliac Society, PO Box 220, High Wycombe, Bucks HP11 2HY www.coeliac.co.uk
Information from the IMEGA group.
Thank you to group member, Jane S., who has sent us the following list of ME related web sites, which she has found useful. Jane has written a brief outline about each site and what they have to offer.
www.brainfogging.net This is a site run by Ally, a 26 year old ME sufferer. It includes a message board, which is very busy and allows ME sufferers to share worries and to help others, and also to have a laugh. The site also has three chat sessions a week, which are great fun.
www.mesupport.bigstep.com This site is run by Louise a 23 year old ME sufferer. The site has lots of useful information about ME. Louise is also interested in people writing articles for her site on particular aspects of the illness.
M.E. Mums This site is run by Sally a 24 year old ME sufferer for people to share stories and advice about pregnancy and childbirth with ME.
Group member Jane Andrews sent the following information to us:
Would you like to join Connections the new group for Jehovah's Witnesses with ME? If so contact myself, Jane Andrews .
West Yorkshire Fire Service is offering FREE home fire safety checks. All aspects of fire related risks will be addressed and free smoke alarms fitted when necessary. If you would like to take advantage of this vital life saving service (open to all living in the West Yorkshire area) contact your local community fire station. For details of your nearest station .
British Telecom offer a free Directory Enquiry Service for people who cannot use the phone book because an illness or disability means they are unable to hold or handle it. The service is for the personal benefit and use of the individual registered and must not be used for the benefit of third parties. If you would like to register to use this service, or would like to find out more call the free Helpline .
From Vivienne Wakerly.
"After a long search, I am delighted to have purchased a " head set phone", as like many ME sufferers it hurts to hold the phone up to my ear. The head set fits over the head like music head phones, but with only one padded ear. There is a microphone on a bar like singer-dancers wear on Top of the Pops! The phone also has a loud speaker, although I find its one way at a time mode awkward. You will need to contact a special number at British Telecom (or you'll want to strangle someone) - BT Age and Disability . They can send an A4 brochure with details of various aids (Freedom to Communicate). I got the version for Occupational Therapists etc. which is fine. They may do a customer version one by now."
"The three suitable phones are: Converse 220, 320 and 300 (top model). They are in theory obsolete, but are still available - BT is due to replace them. The good deal is that if you rent the phone, the head set comes free (otherwise the cheapest one is £60). To buy a Converse phone costs Converse 220- £45, Converse 320 - £60, Converse 300 - £80. Two of the models are available to rent. Rate per quarter: Converse 220 -£5, Converse 300 (mine) £8."
If you are retired or live alone and need work doing on your home, there is a service in Leeds called Check Point that will recommend the most suitable firm/people to do your size or type of job. This covers services such as Roofing, Plumbing, Security, Gardening, Building Work, Decorating, kitchen appliance repairs, TV/video. If you already have an estimate for a job, Check Point will also be able to tell you if it is reasonable for the job concerned.
Contact Check Point on .
If you are moving house, remember to let us know your change of address so that you continue to receive the newsletter. Please contact our membership secretary Please also inform the membership secretary if you wish to cancel your membership of the group.
Thank you very much to those of you who have sent contributions for this newsletter. We always welcome input from members. Please send items for the November newsletter (by September 17th) to the editor, Jane
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.
