NEWSLETTER
November 2001
Our regular meetings at the West Yorkshire Playhouse Café continue on the following dates: Tuesday November 20th, Tuesday December 18th, Tuesday January 15th and Tuesday February 19th. Please note, that in a change to previous years, there will be a December Playhouse meeting this year (also see details of our Christmas party below). The meetings start at 1pm and usually last a couple of hours. You are welcome to join us at any time during the two hours to meet fellow Leeds & District Group members. Refreshments can be purchased from the Playhouse café. You will also have the opportunity to borrow books and tapes from our libraries. If you are joining us for the first time, you can identify us by the sunflower on our table. If you require further information about the meetings or would just like to speak to someone before coming along, please contact Chris M. 
or Simon .
Important: A number of our group members have severe chemical sensitivities which means they can become extremely ill when exposed to even small amounts of fragrances. We must therefore request that when attending meetings, meditation classes, theatre trips or any other group get-together, you do not wear perfume, aftershave or hairspray. Thank you for your cooperation.
If you are unable to come along to our monthly afternoon meetings but would still like the opportunity to meet and socialise with other ME group members, we now have an alternative for you with our new evening meetings. These meetings will be held on the first Monday of the month: Monday 3rd December, Monday 7th January, Monday 4th February and Monday 4th March.
Just like the Tuesday meetings this is a chance to have a chat with fellow ME sufferers. Friends and carers are welcome too. There will be a sunflower on our table so you can identify us. We will be there from 19.45 to 21.45 so turn up whenever you want - but be aware that the Playhouse Bar can get very busy during the intervals in the plays (hopefully it will be quieter once the plays start again).
If you haven't been along before and would like to contact someone beforehand please phone Tamsin or David (evenings only please).
A reminder that we are running a group of four meditation classes during the next couple of months. 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: November 6th, November 13th, November 27th and December 4th. We intend that the classes start promptly, so please give yourself plenty of time.
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.
Please remember not to wear perfume, after-shave or hairspray.
The group Christmas party will take place on Sunday December 16th. Please note the change of venue this year to - 47 Birkdale Drive, Leeds LS17 7RU. This is the home of Chris and Simon. Our thanks go to them both for hosting the evening. The party starts at 7.30pm and will probably last a couple of hours, or until we all collapse with exhaustion! If you can't make the start or can only manage to stay a short time that’s fine. Just pop in for as long or as short a time as you wish. Friends and carers will also be very welcome. Drinks will be provided but please bring along a contribution of food, if you can. For further details or directions please contact Chris M. or Simon .
Miranda Thew and Angela Murphy, Occupational Therapists from the NHS Leeds Fatigue Service, came to talk to us in September. They outlined the present expansion of the service, which campaigning by the Leeds & District ME Group has helped to bring about. Under a new triage system, patients will now see an OT on their first appointment, with referrals on to a consultant being made as required. This will mean that patients get the all-important advice on how to manage the illness at a much earlier stage. This new system, together with the appointment of a further OT, will greatly reduce waiting times.
Other developments involve the appointment of a part time social worker; a specialist in CBT(cognitive behaviour therapy); and a small increase in physiotherapy resources. The CBT will be used where required for those patients who have particular problems in adapting their lifestyles to manage the illness. A further improvement is that the Roundhay Wing has at last been left behind and the OTs will now be based at Seacroft Hospital.
If you would like to consult the fatigue service, ask your GP for a referral to Dr Philip Stanley at Seacroft Hospital, Leeds. If you have any questions about what the service has to offer, please phone Miranda Thew For our group’s perspective, phone Simon .
Don't forget that if you have already been through the service and are experiencing difficulties, you can phone Miranda or Angela and ask for a "top up" session with an OT. You are allowed up to two of these per year.
At the recent meeting with the Leeds Fatigue Service (see above), the OTs were asked if they were able to help the severely affected and the answer was a confident "yes". They say they have brought about significant improvements in almost all the severely affected patients they have seen, although they do not claim to cure the condition. Apparently many of these improved patients have written testimonials and these may be read by prospective patients. To do this and/or to find out more about what treatment for the severely affected entails, phone Miranda Thew . She assures us there is nothing to be afraid of!
If you have been treated by the fatigue service as a severely affected patient (i.e. bed bound or housebound), please let us know how you got on. Phone Simon .
In the July newsletter we asked you to contact us with feedback on local consultants and alternative therapists. Unfortunately we had a very poor response and so we hope this reminder of the information we need and why we need it, may encourage you to get in touch! One of the main tasks of the group is to provide information to our members and this is only as good as the feedback we receive. We need up to date information on your experiences, good or bad, with hospital consultants. Obviously we are interested to hear about any you have been referred to because of your ME. But we are also interested in those you have seen about some other condition since you became ill with ME. If you told them about your ME, what was their reaction? Did they just dismiss it or did they seem to understand that there might be some interaction between the ME and your other condition?
We are also interested to hear about any alternative therapists you might have consulted. Was your experience good or bad?
We would also like those of you who live locally to contact us with any information you may have regarding social services. Have you had problems getting a home help etc from social services or have you received help but found it to be unsatisfactory? We would also like to hear from you if you have a good experience of the service.
Several promising new research projects are reported in the latest newsletter from the CFS Research Foundation. Perhaps the most interesting is taking place at the Universities of Southampton and Reading, with the aim of identifying genes in the human body which might be affected by CFS. "The results which are emerging have gone far beyond what was expected," the newsletter reports. "These scientists have found eleven genes which were affected in CFS patients, but not in matched controls and, most importantly, they found patients who are showing activation of genes which are not shown in the list of any known human genes or viruses. This means it is likely that they have found evidence of a previously unknown or undetected human gene or a virus which is playing an important role in making patients ill." A second, larger, study is now planned, but the Foundation desperately needs more funds to enable this, and other projects, to go ahead. If you are able to help, you can contact the CFS Research Foundation at 4 One Tree Lane, Beaconsfield, Bucks, HP9 2BU. Those making regular donations receive the newsletters which give updates on the research.
Among the fundraising ideas which are suggested in the newsletter is collecting your 5p pieces in a jar. Every little helps! (Thanks to Sheila McManus for passing the Foundation’s newsletter on to us.)
The PALS service has been launched in Leeds to help patients "find their way around" the NHS. If you have any concerns or need information regarding the NHS, phone or
We have recently become a partner group of Tymes Trust, one of the national groups providing information and support to young people with ME (under 26). They have a quarterly newsletter and a Children and Families Advice Line on (11am-1pm and 5-7pm, Mon-Fri). Their associated web site is www.youngactiononline.com. For more information on Tymes Trust, please contact them as above or write to them at 9 Patching Hall Lane, Chelmsford, CM1 4DH, enclosing a stamped addressed envelope.
This guide appears on the Young Action Online web site (see above). Its author, Jane Colby, writes: "This document has just been updated and rewritten to include new information which should help families facing disbelief and possible Child Protection proceedings. It lists the kind of help that social services are supposed to provide and discusses ways out of the nightmare of suspicion of child abuse and neglect". It can be downloaded from the web site.
If you have a child with ME and are having this sort of serious problem with social services in our area, please let us know. Phone Simon . Alternatively, phone direct to AYME (Association of Youth With M.E.) on or Tymes Trust (see number above) - they may be able to help.
Another interesting article on the Young Action Online web site is "How To Go Places and Meet People", which is full of useful tips about holidays and generally getting out and about when you have ME. Although written with young people in mind, it is equally appropriate for everyone else! Once again, it can be downloaded from the web site (see above).
For those of you who are well enough to go abroad on holiday, we've found an invaluable web site which has "reviews" by ordinary holidaymakers of resorts and accommodation worldwide. So if you're thinking of staying at a particular hotel or apartment, you can go on the site and find several opinions about it from people who have stayed there recently. Having ME makes it all the more important to choose the right place to stay and first hand info on things like noise, security, and what the beds are like(!) can be very important. The web address is www.holidays-uncovered.co.uk.
Following on from our information in the last newsletter about the Home-Based-Break Service in Wakefield, details of free home based respite services available throughout Leeds can now be obtained from Leeds Carers Centre on 0113 246 8338.
Westcare UK, an ME charity based in Bristol, runs residential rehabilitation courses which are apparently being well received by participants. According to Westcare:
"The courses help with the self-management of the illness and thereby enhance the quality of life and aid improvement or recovery. The multi-disciplinary team, comprising a doctor, occupational therapist and counsellor, works closely with a small group of clients to help them devise their own individual plan to manage their illness. The courses are competitively priced and the cost is increasingly being met by health authorities."
Details are available from Westcare www.westcareuk.org.uk.
Don't forget that advice on illness management is also available locally through the NHS from the occupational therapists at the Leeds Fatigue Service. To consult the Fatigue Service, ask your GP for a referral to Dr Philip Stanley at Seacroft Hospital, Leeds.
The feedback we receive suggests that people with ME can be prone to multiple chemical sensitivity, i.e. adverse reactions to traffic fumes, perfumes, household cleansers etc. It also seems that the onset of this can be gradual, with minor reactions becoming severe over time. It is therefore probably a good idea for people who believe they may be at risk to take the precautionary measure of reducing the toxic load on their body by changing over to perfume-free and natural alternatives wherever possible. Many of these alternatives can now be purchased from your local supermarket and/or health food shop. If you have become more aware of fumes, perfumes etc in recent times, this can be a sign that you may be developing a problem.
Information about what to avoid and where to find alternatives may be found in the following issues of What Doctors Don't Tell You magazine: October 1999 (toiletries), July 2000 (toothpaste), and May 2001 (household cleaners). www.wddty.co.uk.
Ecover are one of the well known companies who manufacture green cleaners and other products. Visit their website at www.ecover.com or
Many people with ME seem to suffer with IBS, so you may be interested to learn that information on irritable bowel syndrome can be obtained from the IBS Network, homepages.uel.ac.uk/C.P.Dancey/ibs.html
As ME sufferers we can be at risk of developing osteoporosis. Our enforced lack of mobility and exercise, our dairy free diets (for those or us who are intolerant to dairy products) are all risk factors. Women approaching the menopause, particularly those unable to tolerate HRT (Hormone Replacement Therapy) could find themselves at an increased risk. There is a local support group for people with osteoporosis or for those who would like to find out more about it and perhaps how to reduce your chances of developing it: Leeds & District National Osteoporosis Society Support Group, Helpline
The National Osteoporosis Society web site is at www.nos.org.uk.
The British Nutrition Foundation says that we need around 900mg of calcium per day to ward off bone disease in later life. Calcium is found in green leafy vegetables (as well as in milk) and many calcium-fortified foods are now available. If you are unable to tolerate dairy products, Tropicana Calcium Orange juice, available from most supermarkets, has the same amount of calcium per glass as milk. When using rice milk or soya products as a milk substitute look out for those which are calcium enriched.
If you are one of the many ME sufferers who cannot tolerate wheat and dairy products you may be interested in the following company who deliver wheat free, gluten free and dairy free products to your home (delivery charge £3.95). The Allergyfree People can be contacted on (ask for their catalogue to be sent to you) or visit their web site.
Wellfoods is a Barnsley based company which distributes the "Linda Kearns" cake, created to combat menopausal symptoms. There are different varieties of the cake including – date and walnut, tropical flavour, raisin, cherry, cranberry and a savoury flavour – cheese and sun dried tomato. All the cakes are also wheat free. For stockists, call Their web site is at www.bake-it.com/WellfoodsIndex.htm.
Dr Sarah Myhill (a medical advisor to Action for ME) has produced a nutrition fact sheet for people with ME. This can be downloaded from Dr Myhill’s web site.
One of our members has written to us to recommend her award winning local butcher. Andy Annat’s Gourmet Stores is in Woodlesford near Rothwell but they will deliver free anywhere between Harrogate and Wakefield. Our member writes "His produce is not run of the mill but very special. He does a fabulous barbecue range. He will also make up sausages and similar for special diets." He makes gluten free sausages and also "sin free" sausages which are low in fat. Thanks to Carolyn Cooper for her recommendation. Andy Annat’s Gourmet Stores
The government has announced changes to the rules which allow people on incapacity benefit to do some work while still claiming benefit. The changes will come into operation from April 2002 and it is believed that they will also apply a year later to those who are already in therapeutic work at the changeover date.
As always with benefits, the changes are complex and the details are yet to be announced but the main points are:
The above is intended only as a very rough guide to what is a complex issue. For more details about the proposed changes (and/or about how to do therapeutic work under the present rules) see the Summer 2001 issue of Disability Rights Bulletin from Disability Alliance www.disabilityalliance.org.
, the CAB, or Action For ME’s Welfare Benefits Helpline
If you buy books or music etc from Amazon, you can now help raise money for Leeds & District ME Group! Just double click on one of our links to Amazon and we will receive a donation of 5% of the purchases you make. There are also links at the bottom of the home page and links pages.
Diane Heald’s daughter, Kay Louise Garlick, has very kindly offered to do some more fund raising for us. She is hoping to run a raffle at First Direct in the run up to Christmas. Please help if you can by donating raffle prizes, only those of an alcoholic nature are required! Please bring any bottles of wine, spirits etc. along to one of the group get togethers coming up this month and hand them to any of the committee members who are present. Thanks for your support.
Please also see the note below about the Christmas catalogue.
£72.97 - Thank you to everyone who bought from the catalogue. Please support us again in this way if you can. The new catalogues will be available for you to borrow at our November Playhouse meeting or at Meditation Classes. Please see Chris M. at these meetings or phone her on .
Pollards Newsagents, Moortown, Leeds 17 - £58.70 & £60.00
Many thanks to Pollards (and their customers) who have had one of our collection boxes for many years.
Thank you to the following for their kind donations for group funds
Thank you to all our card customers and to the group members who have sold cards to their friends and family on our behalf.This raised £47.50 in the Leeds area and £61.50 in the Castleford area.
In early June four members of the committee braved the freezing cold weather (yes- it was June!) to raise funds for the group at a Car Boot Sale! A total of £66.84 was raised.Thanks to those of you who donated items for sale.
Introduction fees £45.00
Thank you to the following who have all supported the work of our group:
Joseph & Mary Hiley Trust £100, for the Dr Myhill clinic last year.
LCC Community Chest £200, for the Women's Health Day and £150 for the Alexander Technique Classes.
If you are fed up with being disturbed by unwanted telephone calls The Telephone Preference Service (TPS) may be able to help. It is now unlawful to make direct marketing calls to individuals who have indicated that they do not want to receive such calls. To prevent unwanted calls you can contact companies directly and ask them to stop phoning you or you can register with a central service (TPS) to stop such calls. They can not prevent calls from market research organisations, you will have to contact each company directly. To register call the registration line You will be asked to record the telephone number you wish to register and leave your name and address details so they can write to you and confirm your registration. Registration takes up to 28 days to take effect and can be cancelled at any time.
(Information from Leeds Carers Centre Up-Date)
If your health problems mean you are no longer able to walk your dog, contact Leeds Dog Walking Service or mobiles on 07759 328 252 or 07759 328 247.
If you change your address or wish to cancel your membership of the group please contact our membership secretary, Bernie Howarth 
.
Please send items for inclusion in the March 2002 newsletter, by January 18th.
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.
