NEWSLETTER
July '99
This edition of the newsletter is sponsored byThe Nationwide Foundation
Congratulations to Chris & Simon
VOLUNTARY SUBSCRIPTION SCHEME
NEW GROUP TREASURER REQUIRED
COMMITTEE NEWS
RECENT FUND-RAISING
FUTURE FUNDRAISING
MEETING WITH LEEDS FATIGUE CLINIC
FEEDBACK NEEDED FROM LEEDS FATIGUE CLINIC USERS
PARLIAMENTARY DEBATE ON ME
MEDICAL STUDENTS
MEMBERS' QUESTIONNAIRE
LEEDS DISABILITY DIRECTORY / LEEDS ACCESS GUIDE
SHOPMOBILITY IN YORK
RED CROSS EMERGENCY CARE
PANIC ATTACKS
INTERNET ACCESS FOR HOUSEBOUND/BEDBOUND MEMBERS
SUPPORT THE 25% GROUP- RAISE FUNDS FOR ME RESEARCH
BEDBOUND AND NEED CHEERING UP?
USING A LIGHT BOX TO KICK-START THE BRAIN
INFORMATION WANTED
SLEEP PROBLEMS
SAMBUCOL
ATTENTION PARENTS & YOUNG SUFFERERS
ARE YOU FEELING LONELY?
RESEARCH PROJECT - CAN YOU HELP?
TEACHERS' PENSIONS
DISABILITY AIDS
DECORATING THIS SUMMER?
CHANGE OF ADDRESS?
NOVEMBER NEWSLETTER
We open this edition of the newsletter by sharing some good news. Two of our committee members, Chris M. and Simon, have recently announced their engagement to each other. Their marriage will take place this month. All Chris and Simon's friends in the group send them congratulations and very best wishes for their future together.
Unfortunately we now have to move on to more mundane issues! It is voluntary subscription time again. This is when we ask those of you who can afford to do so, to volunteer to pay a small amount (£3.00 ) towards group running costs.
As the group continues to develop and provide more services, there is obviously an increased demand on funds. Unlike most other ME support groups throughout the country, we do not have a compulsory membership fee, as we realise many ME sufferers are living on a low income. Non payment will not affect your membership rights in any way.
If you can manage to send us the £3.00 fee, please complete the enclosed subscription form in the envelope provided to group treasurer, Tim Cogan. Cheques or postal orders should be made payable to Leeds & District ME Group. Thank you for your support.
Of course, we are also very happy to accept donations from non-members! If you wish to send us a contribution please print the form out and post it with your cheque or postal order.
Following the group annual general meeting in May 2000, Tim Cogan is resigning from his post as Group Treasurer. Obviously the group can not continue if this role is not filled so we need a volunteer to take over from Tim. No formal qualifications are required and the duties are not arduous, they include:
Please get in touch for a chat if you think you may be able to help us out. Contact Simon on 0113 266 1150.
At the Group Annual General meeting, held in May, the following committee members agreed to stand for office again in the coming year : Jane Ashworth, Valerie Bloom, Helen C., Anne Cogan, Tim Cogan, Mary Lance, Chris M., Simon, Anne Thackray and Jenny Thompson.
Group Chairman, Simon, expressed his thanks on behalf of the group to retiring committee members - Moyra Andrews, Diane Heald, Angela Petre and Steve Theobold, for their contribution to the group.
New committee members Nick Iredale (new group secretary) and Bernie Howarth (new membership secretary) were welcomed to the executive committee.
The Supermarket Coin Collection at Asda's Killingbeck Store raised £203.34
Thank you to all the collectors who gave their time and energy to support the group. Thanks also to Tim Cogan for organising the whole collection so efficiently.
Donations:
Thank you to everyone for their kind donations.
Webb Ivory Catalogue
The new Webb Ivory Catalogue is now available and orders are being taken from now until October 31st. As this is mainly a Christmas catalogue we realise this is rather an unseasonal announcement, however as our next newsletter won't be out until November, that would be too late to take orders in time for Christmas.
Catalogues are available from Anne Cogan at any of the forthcoming Leeds Meetings or at Chi Kung classes. The catalogue has a wide selection of all the usual Christmas necessities such as cards, wrapping paper, crackers, decorations etc. There are also gift ideas suitable for Christmas, kitchenware, toys and birthday cards and wrapping paper.
Once you have made your order please pass the catalogue on to friends and family so they can also make orders. Please do not return the catalogues to us. Please send your order forms, complete with payment (cheques should be made payable to Anne Cogan) to Anne Cogan. All orders must be received by October 31st, however we would prefer to receive orders sooner than this if possible.
Committee members Chris M. and Simon met Dr Philip Stanley, Dr Sean Lynch and Senior Occupational Therapist, Miranda Baldwin from the Leeds Fatigue Clinic in April to establish a dialogue with the clinic and investigate ways in which our group and the clinic might work together.
We were able to give some feedback from our members, both positive and negative, and were pleased to find that many of our criticisms - for instance about the delays experienced by patients, the unsuitability of the inpatient facilities, and transport problems - were accepted.
The staff at the clinic would very much like to improve things but their main problem is one of funding. Suprisingly the clinic receives hardly any money at all from Leeds Health Authority itself - most of the funding comes from the surrounding authorities, who have to pay to send their patients to Leeds!
We agreed that we would do what we could to bring pressure to bear to improve the clinic's level of funding. In the first instance, we shall be writing a letter to the Community Health Council.
Various points of interest emerged from the meeting:
The meeting was friendly and positive and we expressed our appreciation for the important role which the clinic performs. We hope that we shall be able to work with them to improve and develop things further in the future.
As reported above, the Leeds Fatigue Clinic is organising a forum on the morning of Saturday 31st July in the Conference Suite at the Roundhay Wing, St James's Hospital to allow users of the clinic and their carers to give feedback on the services they provide.
They are interested in hearing from anyone who has attended the clinic in the last twelve months and have asked us to help them to spread the word. If you have attended the clinic and would like to be involved in the forum, please get in touch.
The forum will last for about two hours with a break in the middle and will involve separate discussion sessions for patients and for carers. This will be an excellent chance for you to have your say about the clinic. We shall be involved in the meeting ourselves, and we hope that a great many people who have used the clinic will contact Miranda and come along.
The Fatigue Clinic are also organising a one day training workshop for GPs about ME/CFS on October 6th. It might be worth mentioning this to your GP at your next visit- the more doctors we can encourage to go along, the better!
In May, a debate on ME was introduced to the House of Commons by Tony Wright MP, leader of the All Party Group on ME.
The debate included a persuasive contribution, about the problems experienced by ME sufferers, by Bill O'Brien, MP for Normanton. Mr O'Brien was one of the MPs visited recently by group members Sue Heppenstall and Steve Theobold.
You can download the debate from the parliamentary website - there are six webpages of it in all, so if you're short of reading material, this will keep you busy for a while.
Earlier this year a number of our members agreed to be interviewed in their homes by students from Leeds Medical School. Each member who volunteered was visited by a different couple of medical students, and were questioned about how ME affected their lives.
This was part of a project the students were completing which looked at the effects of chronic ill health on individuals living in the community. Once they had completed their interviews they were to present the information to their fellow students.
Most of our volunteers found this a positive experience and felt it also provided the opportunity to start educating the doctors of the future about ME! The majority of the students showed an interest in what they learnt from us, and they were also sent home with further literature containing information about ME.
This is something we hope to take part in on an annual basis, if we are asked to help out again.Thank you to all the group members who took part.
The results of the members' questionnaire have now been collated.
These two guides can be downloaded and viewed with Adobe Acrobat (which can be downloaded free from either site). Alternatively they are both available in print, Braille, large print, on tape and also on CD-ROM.
Leeds Disability Directory is an A-Z guide to local services for the disabled, produced by Leeds Social Services.
Leeds Access Guide lists parking, access and disabled facilities for shopping, wining and dining, hotels, leisure attractions, transport, public conveniences and money matters. In print it costs £3.00 (free to disabled people living in Leeds), available from the Equal Opportunities Unit, 0113 224 3589.
Jenny Gilmore from York has very kindly sent us the details of Shopmobility in York. The Shopmobility centre is at the Piccadilly car park in the city centre. Opening times are Tuesday- Saturday, 10.00am- 4.45pm. Phone 01904 679222 for more information.
The Red Cross provides an emergency personal care service for people in their own home, for up to three days.
This service can be called upon if, for example, your regular carer suddenly became ill or if you are usually independent but took a turn for the worse and couldn't manage. In these sort of circumstances the Red Cross can provide help with shopping, meals, help getting up and dressed etc.
Telephone The Red Cross on 01274 620999 (office hours) or 0410 351 798 (8am-10pm, seven days a week).
You can also find out more about the Red cross by visiting their website at http://www.redcross.org.uk
One in three people in the UK suffer from panic attacks, which can range from heart conditions, high blood pressure to fevers, phobias about going out or travelling on public transport. Some ME sufferers tend to experience panic attacks. If you suffer from panic attacks and want help or someone to talk and share your problems with, then you can call a helpline, Help 020 7923 4444. If you would like more information about Help call 020 7923 1396.
We are looking into the possibility of acquiring some second-hand computers with modems, which would be loaned out to housebound or bedbound members so that they are able to send and receive email, browse the world-wide web and even buy things over the internet.Some members of the group have found that being able to do this has opened up a whole new window on the world, and greatly reduced their feeling of isolation.
There are several internet "mailing lists" run by and for people with ME/CFS and lots of web pages produced by individuals and by many of the ME organisations and support groups world-wide.
The 25% Group, for severely affected members (see Useful Numbers list for details) are still producing their book of cartoons about ME, "It's good to laugh" (cost £2.99 + 40p p&p*). They also sell notelets featuring the cartoons (cost £2.50 + 40p p&p*).
Both items are sold in aid of ME research and other projects. To order either item please send a cheque or postal order made payable to:
Simon Lawrence at 18 Grasmere Road, Royton, Oldham OL2 6SR* within the UK
From Kate Johnson.
Why not send a request in to the radio - and get a plug for ME at the same time? Ask for it to be played at a specific day, and then if you're not well enough to listen you can always record it and listen later. We wrote in to Classic FM last year (to the request show 12-2pm every weekday). It really made my day when they played it, and cheered me up for the rest of the week.
From Patience Walker.
"I have suffered from increasingly severe symptoms of ME since 1984. In 1994 I became temporarily paralysed and was hospitalised and diagnosed by the Chronic Fatigue Clinic based at Seacroft hospital and headed by Dr. Stanley.Since then I have lived at home with a paid non-residential carer. At my worst I am bedridden, intermittently paralysed unable to tolerate or follow a conversation, read, type, follow a programme on television or radio. Stick with it, the encouraging bit is coming next.Each year I have suffered a relapse from New Year onwards of four or five months. Dr. Stanley suggested that I try using a light box. I began using a Superlux (SAD Lightbox Co. Ltd) fitted with natural daylight bulbs at the beginning of October. I find it quite unpleasant as I am still slightly photophobic but can just about tolerate it for the recommended thirty minutes.
Since beginning to use it I have learnt that by manipulating the time of day when I expose myself to it I can regulate my sleep patterns. I have regained a considerable amount of my intellect, in fact I sometimes have to omit using it for a couple of days because I become too mentally hyper. This is a great advantage over any medication which usually takes a couple of weeks to wear off.
Since new year I have been studying for a couple of hours per day, with plenty of brain rests. I am much more reliable with calculating money, hours worked by my carer etc. (I was previously a mathematician !) and have started to be able to listen to classical music.
My physical functioning is slightly worse than in summer and I have suffered two fortnight long relapses but overall better than it has ever been during winter since 1984.
With regaining my intellect I feel I have regained my sense of self and I am able to view my condition and lifestyle more objectively rather than just being sucked down into it."
Thank you to Patience for sharing her story with us.
See our November '98 Newsletter for more information about light boxes.
Jacqui Butterworth would like to hear from anyone who has:
If you can help please write to:
Mrs Jacqui Butterworth, 39 Hillhouse Lane, Hillhouse, Huddersfield HD1 6JTFrom Andy Stark.
"The first thing I do to try and sleep well during the night is get out of bed during the evening, even if it is only for an hour or so. If I am having a better spell, I try and stick to a routine (e.g. now usually up for three hours from 8pm.) Once I get back to bed I find reading can help to relax me off to sleep. I also use relaxation and meditation exercises to stop my brain ticking over."
Other tips members have found helpful:
From Mary Lance.
If you have problems with complications and relapses after a cold or flu there is a remedy that seems to stop them in their tracks. It is called Sambucol, an extract of black elderberry flavoured with raspberry, and the makers claim that it has antiviral properties. This seems to be true - several people have taken it as soon as an infection threatens, and it has worked on just about every occasion.
After taking Sambucol for two or three weeks for a stubborn infection, one member found that a badly infected tonsil that had been giving trouble for years was hugely improved. It also helps swollen glands in the throat, prevents infections in the head from going onto the chest and also dries out sinuses, miraculous or what! It is not a cure for ME but it helps get rid of complications that can cause relapses.
Sambucol comes sweetened with sugar (rather too syrupy for some) or with sorbitol. It costs £6.99 from
English Herbal, Eastgate, Leeds and JW Clapham Herbalists, Market Buildings off Vicar LaneIt is also available by mail order from Higher Nature, 01435 882880, and from http://www.sambucol.com/
Young Action Online is free to anyone up to the age of 25.All Action for ME young members are automatically eligible for Young Action Online, so if you haven't already done so, please give the young person's name to Katherine at Action for ME, on 01749 677551. She will send a free Welcome Pack.
YAOnline send quarterly mailings, provide the opportunity to join the Open Network, a list of ME friendly Professionals- doctors, home tutors etc. They have an educational psychologist who can help with statements of special educational needs.
YAOnline works in close partnership with TYMES, a comprehensive magazine for young people with ME and has a website at http://www.jafc.demon.co.uk/yaonline/
YAOnline, PO Box 4347, Stock, Ingatestone, CM4 9YEDo you often feel bored or lonely at home ? Then why not join a telephone network and speak to other ME sufferers. You will make new friends who understand and share your problems, and have a laugh. If you are interested then email Carolyn with your phone number and address and she will send you a list of the other people who have also telephoned. Please indicate if you do not want your address printed on the sheet.
Gill Stewart, who is based at Lancaster University, is carrying out research into how ME affects people's lives. She wants to know what people feel their needs are and their experiences - good, bad or indifferent - of seeking help from social services or elsewhere. For an information sheet of what the research involves please email Gill or call her on 01524 770376.
This will probably involve writing about your experiences under a list of topic headings. If you prefer to talk you may call Gill on the number above. Gill would also like carers to write from their own perspective. The research is intended to increase understanding of ME among social workers and care managers, and thus improve the support which is available.
Gill has had ME herself for many years and has been severely affected. She used to be a social worker but now receives home care from social services herself.
It seems, that like health workers in the past, many teachers who have had to give up their career as a result of ME are having great difficulty in getting their occupational pensions awarded.
A help group for health workers aided many in making successful pension applications. A teacher has now set up a similar support group for his profession, NASTME (Network for Advice and Support for Teachers with ME).
Teachers requiring help and support in their pension applications should contact James R Talbot on 01722 325458 or write to him at:
NASTME, Glenthorne, 96 London Road, Salisbury SP1 3HAIf you require the use of disability aids, there are a couple of centres in Leeds which may be able to help you.
The Ross Care Centre, Unit 3, Royal London Ind. Estate, Old Lane, Beeston, Leeds LS12 8AGIf you are planning on having some decorating done this summer, but find that paint fumes exacerbate your symptoms - we may have the answer ! B&Q produce their own range of odour free paints (gloss, emulsion etc.) which do seem to work.
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 November newsletter, by September 17th
Please indicate clearly when writing that your information is for publication in the newsletter. Please also let us know if you don't want us to include your name with the item - Thank you !
March '99 Newsletter