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Welcome to March's newsletter. This is our first newsletter of the New Year, so I hope that you are having a happy and healthy 2003 so far. Thank you to all those who sent letters, emails and cards after November's newsletter it was very kind of you all and great to hear your feedback. Please remember this is your newsletter and that all contributions, suggestions and feedback are gratefully received.
Essentially the Leeds & District M.E. Group is a 'self-help' group run by people with M.E./C.F.S. for people with M.E./C.F.S. The Group is run entirely by volunteers who are all ill. However, being ill isn't compulsory and we would really appreciate some help from people who are well.
We currently offer our members the following services: a newsletter (3 times a year), 4 telephone helplines, monthly meetings, a book library, a tape library, a theatre group, a website and occasional therapy sessions. All this requires the efforts of a large number of volunteers and without them the group would quite simply not exist.
The group started life in Leeds in 1988 and later joined forces with the Wakefield Group. At first the group was one of The M.E. Associations 'Local Groups' then in 1997 it became an independent charity. As a charity we have to work within the guidelines set out by the Charity Commission.
The Leeds & District M.E. Group now has over 400 members. Most live in Leeds and Wakefield, but we also have members throughout West Yorkshire and beyond.
Just to give you an idea of the amount of work that goes into running a group like this, here is a list of the 'jobs' currently being done by volunteers (some people are on the committee, most are not and some people are doing more than one job!):
Treasurer, Secretary, Membership Secretary, 4 Helpline Contacts, Newsletter Editor, Book Librarian, Tape Librarian, 5 Meetings Contacts, 3 Theatre Group Co-ordinators, An Events Organiser, Website Manager, Fundraiser plus all the people who help out with other jobs such as mailing newsletters, supermarket collections and many, many more.
Co-ordinating the work of all these volunteers is the job of the Committee. There are currently 6 Committee Members (again all volunteers and all ill!). Under guidelines set out by the Charity Commission the Committee should include a Chair, a Treasurer and a Secretary. Unfortunately, we don't have a Chair at the moment - a situation that needs resolving soon.
We would like a few more volunteers to join the Committee and help to run the group. In particular, we need a new Chair - or possibly a new Treasurer if we can persuade our current Treasurer to take on the Chair's job.
Well, its for a good cause, you get to meet lots of interesting people and it provides a sense of direction and purpose for those unable to work. It could even provide a flexible way of easing back into work for those in recovery.
We need volunteers for the following 'jobs':
Chair - to help run the group
Or
Treasurer - to keep the accounts up to standards demanded by the Charity Commission.
Committee Members - to act as a link between the committee and some of the volunteers.
Volunteer Co-ordinator - to help recruit volunteers.
All these 'jobs' involve becoming a Committee Member, which means becoming a Charity Trustee. Committee Members must be able to attend regular committee meetings, currently held about once a month on a weekday afternoon. The duties for all these 'jobs' are flexible and to a certain extent will depend on the individual volunteers and how much time and energy they have available.
For further information about these 'jobs' and the responsibilities involved please contact David J.
To help raise valuable funds we have a supermarket collection arranged at Morrisons in Kirkstall for Saturday 21 June from 9am to 5pm. If you can offer an hour of your time to help collect (chairs provided) please contact Dave R.
The more volunteers we have, the less work each volunteer has to do!
West Yorkshire Playhouse is opposite Leeds Bus Station, it has good parking and disabled parking outside the entrance. A lift is available to the café area, which has a wide range of healthy food (and also lovely cakes!) and drinks including herbal teas, bottled water, etc.
The dates for our forthcoming meetings are:
The meetings are very informal and give you the opportunity to meet fellow Group members and browse through and borrow books/tapes from our library.
The meetings start at 1pm and usually last for a couple of hours. You may join us for as long or short a time as you like. We meet in the Playhouse Café and we will have a sunflower on our table so you can identify us.
If you would like more information, or would just like to make contact with someone before coming along, then please contact David B, Pete or Mary
We also have evening social meetings on an occasional basis in the Playhouse Café/Bar. The dates for our forthcoming meetings are:
The meetings are between 7:45pm and 9:45pm. Again, we can be identified by the sunflower on our table.
If you would like further information, or would just like to make contact with someone before coming along, then please contact Pete or Louise
On a cold, wet November afternoon, five brave souls managed to reach the warmth and calm of the Yorkshire Dance Centre. The following hour was both relaxing and uplifting; using the breath to give inner calm and moving into a few easy positions mainly from sitting or lying. The emphasis was on working well within our own capabilities.
We'd love lots more of you to join us in May and June for 6 more sessions.
By popular demand we have arranged 6 more Yoga sessions. Our new venue is the Yorkshire Dance Centre in St. Peters Square, which is directly opposite the Leeds Bus Station. The door is next to the Cactus Bar facing the Leeds College of Music (easy to see when you get there). There is parking in the square and at the Playhouse just next door. Take the lift in the centre to the reception area where you need to sign in, then there is another lift to studio 2. They all start at 1-15pm on the following dates:
Each class will last for an hour and will be self-contained, so don't worry if you miss one: you can join in at any time.
Our teacher Claire is aware of our limitations and will adapt the sessions to fit our needs; even if you want to just watch for a while that will be fine and Claire will have handouts for us all to take away. We will be in lying or sitting positions much of the time so loose, comfortable clothes are advisable. There are thin mats at the centre but bring a towel or blanket if you need a bit more padding.
After the class you can stay for a drink and a chat - the centre has kindly offered us the use of their kitchen.
If you would like any more information or just to make contact with someone before coming along, please contact Helen
During July, August and September (warm summer months!) we hope to have several social meetings in different areas of Leeds and Wakefield. These could be pub lunches, café gatherings or anything else you may suggest. If you know a suitable venue i.e. friendly pub with smoke free part and possibly an outdoor area, or a café in a park or garden centre, we would love to hear from you.
Please contact Helen
If you are moving house, please remember to let us know. Send details to the Membership Secretary . You should also contact the Membership Secretary if you wish to discontinue your membership of Leeds M.E. Group.
ME Accommodation and Care Homes (MEACH) would like you to send them used stamps to help them raise money. They would like any stamps except regular 1st and 2nd class. These should be cut out with at least ¼ inch of paper all the way around each stamp. 25 Turnpike Way, Ashington, W Sussex RH20 3QG.
(Sue)
If you would like to make contact with other M.E. sufferers in the local area, the Group has a friendship list. This is a list of fellow members who would like to make contact with others in the Group.
If you would like to join the list please contact the Membership Secretary . You will be asked to complete a form giving a few basic details about your self (contact details, hobbies, interests, etc).
If you are already on the List it is important to keep your details up to date. Please contact the Membership Secretary if anything has changed, or if you want to be removed from the List.
Changes have been made to the telephone help line offered by Wakefield District Citizens Advice Bureau because of funding cutbacks. The new opening hours are 10am to 1pm and 2pm to 3pm, Monday to Friday.
The Wakefield branch is available Monday, Wednesday and Thursday
The help line at South Elmsall can be called every Tuesday
The help line at the Pontefract Bureau can be contacted on Fridays
The list below gives the addresses of several websites that members of the Group have found useful. Please note that Leeds ME Group is not affiliated with any of these sites.
This website aims to bring Hotels, Motels, Guest Houses, Self Catering, Caravans and Holiday Centres to those with mobility difficulties.
The official website of the national charity.
Site owner Ally says:
BRAINFOG!! keeping the lighter side of ME/CFS and life, well and truly ALIVE!! BRAINFOG!! is a Sussex based, independent website for people with the illness ME/CFS and their carers worldwide. There is a forum and chatroom which you can find on the main website. Both of these interactive parts of Fogland are geared very much towards being a virtual online pub environment where you can kick of your shoes and let of steam and also find all the very much needed support to get you through both the good and bad ME/CFS days. There's loads of other 'stuff' happening in Fogland including a Gathering and sponsored climb of Mount Snowdon (for our carers *winks*) that will be happening in September 2003 to raise money and awareness for ME/CFS so come over to www.brainfog.org and check it all out.
The Blue Ribbon for the Awareness of ME website.
Website that claims to offer low-cost self-help courses over the Internet.
"Co-Cure" stands for "Co-operate and Communicate for a Cure". It has been established with the goal of furthering co-operative efforts towards finding the cure for CFS and Fibromyalgia.
Website run by disabled people covering topics such as medicines, law & legal, charities, help groups, social and housing benefits, disabled products, etc.
Aims to help people understand "invisible" disabilities and pain.
Information about multiple chemical sensitivities.
The official website of the national charity.
Site about crafts run by an ME sufferer.
Site owner Gill says:
"I started M.E Matters really as a personal explanation of what it was like to have M.E, and the kind of things that people could do, or say, to try and empathise, and make things a little easier for us. If I'd thought anyone would print it, I would have written a magazine article, since writing comes far more easily to me than computer technology does. (In fact, prior to this, I barely knew how to work the e-mail facility.) I have recently put some other information on this site as people were e-mailing me with questions, including a forum where, hopefully, folks can get together and help each other. It was never meant to be an intense awareness/public debate/discussion of symptoms type of place. Just someone wanting to give a personal insight, and a bit of a helping hand."
Site owner Sally says:
"I started ME Parents when my husband and I were trying for a baby. I wanted to create a site for ME/CFS sufferers that are parents, parents to be or considering parenthood to get together for support, advice and general chats. The site has been running for about a year now and had a friendly and supportive message board as well as some related articles. I gave birth to a little boy Adrian on November 14th 2002."
Site owner Louise says:
"M.E. Support is a UK website covering many aspects of ME and related Chronic Conditions. I started the site in April 2001. The site contains informative articles concerning all aspects of ME written by ME sufferers. There is a Chat Room, Mailing List, Message Board, Web Directory and a Web Mail service too. Take some time to browse through the site, and to get to know some of M.E. Support's other visitors."
Site covering ME tips and severe ME.
Website about general pain management.
Covers issues related to young people and ME.
General website for disabled people.
Thank you to Simon and Louise for their suggestions.
If you do not have a computer at home, remember that you can access the Internet using Sky Digital, at Internet cafes, and many libraries also now have Internet terminals. If you don't know how to use computers or the Internet, many local colleges run cheap or free courses on basic computing.
Most people know they should aim to eat at least five portions of fruit and vegetables a day as part of a healthy diet. But there has been widespread confusion about how big 'a portion' is, and what can count as one of the five.
The Department of Health has now released portion size guidelines. The full list can be viewed at www.doh.gov.uk/fiveaday/portions.htm
However, a summary is given below:
| Vegetables (fresh, frozen, canned) | - 3 tablespoons |
| Beans and pulses | - 2 tablespoons |
| Salad leaves (lettuce etc) | - 1 cereal bowl |
| Fruit (apple/orange sized) | - 1 fruit |
| Fruit (apricot/plum sized) | - 2 fruits |
| Fruit (berry sized or chopped) | - 3 tablespoons |
| Dried fruit | - 1 tablespoon |
| Pure 100% fruit juice | - 1 small glass |
Each of these is about 80g of fruit/vegetables.
In general you can only count juice (or puree), dried fruit and beans/pulses once each per day. For example, if you have cereal with raisins and orange juice for breakfast that is 2 portions, but you can't count any more dried fruit or juice that day.
Potatoes, nuts/seeds, coconut, jams and 'juice drinks' do not count.
Vegetables in processed food do count towards 'five a day', but those high in added fat, salt or sugar should only be eaten in moderation.
Action for ME's latest newsletter reports that the Department of Health has now recommended their summary of the key ME issues 'Guidance on the management of CFS/ME' in the latest GP Bulletin.
This means that all GPs in England should now be aware of the information in this booklet.
Expert Patient Programmes (EPP) are starting up in various parts of Leeds and surrounding districts. They are a new NHS initiative to help people with long-term conditions to improve their quality of life through lay led self management courses. The courses involve people all sorts of chronic illnesses, not just ME.
If you are interested in joining the programme then contact: Expert Patients Programme North and West Yorkshire, South Leeds PCT, 1st Floor, Navigation House, 8 George Mann Road, Quayside Business Park, Leeds, LS10 1DJ. Alternatively you can contact the EPP by phone: Firdaws Khan , Ghazala Kazmi , or Chris Holroyd
Research published in the Journal of Psychosomatic Medicine has suggested that an imbalance of a hormone called ACTH could cause ME. ACTH is one of the hormones released by the hypothalamus-pituitary-adrenal or HPA axis. This axis manages the body's response to stressful situations.
However, the research was based on only 20 ME sufferers and other commentators have noted that it is early days in this area of research into ME. (BBC News Online)
An MSc student at Staffordshire University is undertaking research to find out how and why people with chronic illness use creative arts and crafts.
If you would like to complete a questionnaire or be interviewed as part of the research, please contact Kathryn Duffield c/o Dr Sarah Grogan, Psychology Department, Staffordshire University, College Road, Stoke on Trent, ST4 2DE or request word document from Jane S.
for information leaflet and consent form.
I am hoping to include a feature article like the one below as a regular feature in the Leeds M.E Group newsletter.
If anyone else would like to have a go at writing the feature article or has a topic they would like information on, please contact Jane
Please remember that the articles are only for information purposes and are not giving professional advice.
by Sue T.
I'd heard a lot about these diets in relation to M.E. and as I'd suffered from irritable bowel syndrome for many years decided to try them. I asked my GP for advice. She suggested a blood test to check I didn't suffer from Coeliac disease. It proved negative but she said that didn't mean I wasn't sensitive to wheat/gluten. She suggested I try cutting them out for a couple of weeks to see what happened. The results on my irritable bowel were miraculous. The symptoms of wind, bloated feelings and food seeming to pass straight through me ceased immediately. This in turn helped my M.E. as I'd been spending lots of vital energy each day on trips to the bathroom and presumably I now get more nourishment from my food.
I've now cut gluten and wheat out for a year. I can't say whether its helped my M.E. as I find the illness to have many ups and downs and I also have homeopathy and cranial osteopathy, which I feel have helped too, so its impossible really to say what has helped but I do feel better than a year ago.
I am not recommending anyone else follow this diet but anyone who has decided already to do so may find the following helpful.
I joined the Coeliac Society as an associate member. To do this I had to tell them the name of my GP and that I had her approval. There is no subscription, just donations. They sent me loads of helpful information, including their food and drink directory of gluten free manufactured foods. This is essential for anyone attempting to cut out gluten as it appears in many forms in the majority of foods and is often not listed in a recognisable form. Non members can buy the book for £5 plus p&p. www.coeliac.co.uk Coeliac UK PO box 220 High Wycombe, Bucks, HP11 2HY
I have tried many different kinds of gluten free bread. Some I found really terrible but I have found one that is tolerable and one that is extremely good. I realize however that everyone is different so it is worth trying several kinds to find one which suits you.
The one I find tolerable is mail order from Lifestyle Healthcare Ltd, who also do pastries, pies, cakes and a few other products. I found their Battenburg cake superb, if expensive at £4.50. www.gfdiet.com You have to order a minimum of 6 items but they freeze for 3 months.
The company which I find extremely good and now use, as I think their bread is as good as bread made with wheat, can be found at www.wheatwatchers.com It's from Wellfoods Ltd Unit 6 Mapplewell Business Park, Mapplewell Barnsley S75 6BP . They have no minimum delivery but p&p is £5 for orders under £30. It's the Antoinette Savil range and can also be found in selected Coop stores, Waitrose and Budgens. If you ring them they will tell you if a shop near you sells them, as some bakeries have them too.
Sainsburys has a very good range of wheat- and gluten-free foods, including frozen pizzas and pies, in their 'free from' range. They have a good supply at the shop in the White Rose Centre but I believe other branches may not have so much. They should be available through their online shopping but it depends which store your order comes from. Mine comes from Bradford and I've not yet been able to get pizzas from them. I've found them a lot cheaper than other health type shops. Tesco are also supposed to do a good range and Asda are just starting to have them.
Editors note: Leeds ME Group does not endorse any particular dietary regime. You should discuss with your GP any significant changes that you want to make to your diet.
The information in this section is sent in by members and should not be interpreted as a recommendation by Leeds ME Group. Any information you would like to have included should be sent to .
Please send feedback if you use any of these services
If you have your own car but do not have a garage or driveway, you maybe able to apply to your local Council for a disabled parking space outside your home. You must be a blue badge holder to apply for this service, and any blue badge holder will be entitled to use the space.
A fee may be payable.
To apply you should contact the highways department of your council (the phone number for Leeds is ). (Jane S. / Sheffield ME Group)
The government runs a scheme called Warm Front, which aims to help vulnerable people in privately owned homes to insulate their home. Substantial help is available with cavity wall and loft insulation, draught proofing etc. .
You may be able to save money on fuel by paying by direct debit and/or switching fuel supplier. Energywatch (an independent watchdog) can help you to do this www.energywatch.org.uk .
(Sheffield ME Group)
Leeds Leisure Services now have scooters available for hire at many parks and at Lawnswood Crematorium. If you would like to hire one, you need to ring to pre-book.
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Lotherton Hall
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Chevin Forest Park
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Golden Acre Park
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Temple Newsam Park
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Roundhay Park
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Lawnswood Crematorium
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The William Merritt Disabled Living Centre and Mobility Service are having open days where you can meet a member of staff and discuss your needs. The days are:
| Tuesday 18th March | 9:30-3:30 | Tuesday 3rd June | 9:30-3:30 |
| Saturday 29th March | 10:30-2:30 | Thursday 19th June | 9:30-3:30 |
| Thursday 17th April | 9:30-3:30 | Friday 11th July | 9:30-3:30 |
| Wednesday 7th May | 9:30-3:30 | Friday 25th July | 9:30-3:30 |
| Thursday 22nd May | 9:30-3:30 |
They are all at St. Mary's Hospital, Green Hill Road, Armley, Leeds LS12 3QE .
The deadline for submissions for March's newsletter is May 17th 2003. Please send your contributions to me at I know that many of you have difficulties, but please could you try and submit any contributions before this date as I will be very pushed for time in May and June so need to be extra organised!
Two last minute items were received as we were going to press.
The Disabled Persons' Transport Advisory Committee (DPTAC) have been undertaking a review of the Blue Badge scheme, on the request of the government, over the past year.
They have now issued further guidance to Local Authorities on eligibility criteria. Of particular interest to ME suffers is that they have now accepted that temporary badges should be available to those whose disability is expected to last for less than three years.
(Feedback, Spring 2003)
A Supertram Access Group will be helping the Supertram project Group make decisions about access to the proposed new tram system in Leeds.
The group is developing an information strategy to pass information about the tram to disabled people across Leeds. If you would like more information about the Group or Supertram contact Gill Crawshaw in the Equal Opportunities Unit .
(Feedback, Spring 2003)
The views expressed in this newsletter are for information only and should not be used in place of advice from appropriately qualified and experience professionals. The views given may not be those of the Leeds & District ME Group, the President, the Editor, 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 newsletter 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 possible make you worse. These comments also apply to information which is given at our meetings and via our helplines, etc.
