NEWSLETTER
March 2001
The group is having a table top sale on Saturday, March 17th at 47 Birkdale Drive, Leeds LS17 7RU (the home of Chris and Simon).
We have a large amount of bric-a-brac and also new knitted toys which we are hoping to sell to raise money for group funds. The event will run from 11am - 3pm, entrance will be 50 pence for adults, free for children (this includes free refreshments).
We really need your support for this event so please note the date in your diary and try and come along. If you are not well enough to attend, please ask friends and family if they could pop in instead. We need as many callers as possible - so please spread the word. You are very welcome to pop in for a drink and a chat even if you don’t want to buy anything!
If you require any further information or need directions please contact Chris or Simon.
The group meets on the third Tuesday of every month at the West Yorkshire Playhouse Café. These informal meetings give you the opportunity to meet fellow ME sufferers and exchange information on coping with ME - or just have a good gossip about anything you want!
The meetings are increasingly popular with members of all ages, from people in their twenties to our slightly older members! If you have been a member of the group for some time but have never made it to a meeting before why not make 2001 the year you finally come and join us.
The meetings start at 1pm, and usually last for a couple of hours. Come and join us for as long or short a time as you wish. Refreshments can be purchased from the Playhouse café. To identify the group there will be a sunflower on our table!
The next set of meetings will take place on the following dates: Tuesday March 20th, Tuesday April 17th, Tuesday May 15th and Tuesday June 19th. Meetings Chart
This year's AGM will take place at 7-30pm on Monday May 21st in the large hall at the Friends Meeting House, Street Lane. After the formal part of the meeting, there'll be a chance to stay on for a drink and a chat, so do try to come along. For further information about this meeting, please contact 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, 18th June, 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 - a therapist will work on you for a while so you can find out if it helps you. Therapies include healing and massage.
The whole afternoon is completely FREE and very enjoyable. You may bring a friend if you wish. Make a note in your diary now, and mark your calendar! Don’t miss it.
This spring, we shall be running a series of classes in the Alexander Technique. This technique provides a way of improving our ability to control our balance and movement so as to reduce the stress on all parts of the body, something which should be useful for those of us with ME! The processes taught are very gentle, so there shouldn't be any problems with over-exertion but, as with our previous therapy sessions, there won't be any pressure to join in with anything you feel is beyond your present capabilities.
Our teacher is Pat Brown and the classes will take place at Meanwood Community Centre, on Thursdays at 1pm on the following dates:
We intend that the classes will start promptly, so give yourself plenty of time. Please note that the times are one hour earlier than for our previous classes. This is to make it easier for those of you who have to pick up children from school. Oh yes, and the venue has changed too - don't turn up at Headingley!
Some of the techniques which Pat will teach in her classes will involve lying on the floor so please dress appropriately. Trousers will be preferable to skirts. There are mats at the centre, but you might want to bring along a sleeping bag or similar if you want to be extra comfy. We also suggest that you bring a few layers of comfortable clothing to put on or peel off to suit the temperature.
One more thing that is very important: bring some paperback books! This is not to fill in time during the boring bits but to use as a pillow. Pat will explain all on the day! You should have about four inches' thickness of books, made up of about 4-5 different volumes so that you can adjust your pillow to suit!
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 of benefit to your health.
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.
Only one person got in touch to say that they would be interested in the possibility of meetings in Durkar (as mentioned in the last newsletter) so there doesn’t seem to be any point in going ahead with them. Thanks to Julia Rees for offering anyway!
If there is anyone out there who would be willing to organise meetings in a more central Wakefield location (either in their own home or at some other suitable venue) please phone Simon and perhaps we can float the idea in a future newsletter. Otherwise it looks as if Wakefield meetings will have to be suspended due to lack of interest.
But don’t forget that you are all invited to the meetings in Leeds! Several people from the Wakefield district already attend the West Yorkshire Playhouse Café meetings. The Playhouse is just across the road from the central Leeds bus station and there is plenty of parking available. So do come along if you are able! See details of the Playhouse meetings.
There is a new edition of our list of useful phone numbers. The information has been updated and many new numbers added, so it may be worth looking through the list to see if there's anything new which may be of use.
Last October, Trevor Wainwright of Castleford Aid for ME, Leeds & District ME Group member Steve Theobold, and Dr Colin Pollock (Director of Public Health at Wakefield Health Authority) met with representatives of the Department of Health to discuss the possibility of developments in the treatment of ME/CFS in the Wakefield district.
Dr Pollock said that Wakefield District would be interested in running any pilot schemes which emerge from the report of the Chief Medical Officer's Working Group on CFS. This report is expected to come out later this year.
Dr Pollock is also intending to set up a half day conference in Wakefield, at which a prominent member of the Working Group will come to talk to GPs, patients, carers, and other interested parties. We will inform all our members in the Wakefield district as soon as we receive any details of this.
Trevor Wainwright reports that Keith Salsbury, the Chief Executive of Wakefield Health Authority, has written to the Chief Medical Officer about people with ME/CFS as follows:
"Dr Pollock and myself believe that this group of people with complex problems and symptoms demonstrate features of a form of social exclusion in terms of their difficulties with accessing appropriate and responsive health services. We would wish to support their case for better care and services in whatever way we can within the constraints of our resources locally."
It all sounds very promising!
The Leeds Fatigue Service held a meeting in January to give service users who had attended the clinic in the previous twelve months a chance to give feedback.
The service is still suffering from severe underfunding and waiting times are long. The Fatigue Service team stressed once again that positive feedback from patients would assist them in their fight for better funding. They have to prove that they are effective in order to survive and expand.
If you feel that you have benefited from the Leeds Fatigue Service, you may be able to help by putting something down on paper to say how the clinic has helped you (perhaps contrasting the treatment you have received from the Fatigue Service with that obtained elsewhere). Then send your testimonial to:
Miranda Thew, Senior Occupational TherapistIf you would like to write something but might have difficulty in doing so, phone Simon and we'll try to help. (Miranda Thew was previously known as Miranda Baldwin).
If you live in Leeds, it would also be useful if you could approach your local MP to talk about the problem of funding for the clinic. If you feel you might be able to do this, phone Simon first for a chat about what you might say.
The Leeds Fatigue Service has now produced an information pack for GPs about ME/CFS.
Your GP can obtain one by contacting either Dr Stanley at Seacroft Hospital or the Fatigue Service occupational therapists at the Roundhay Wing at St James's.
Alternatively you can obtain one yourself to pass on to your GP from Miranda Thew or one of the other fatigue service occupational therapists on 0113 206 2141.
AfME and AYME have arranged a one day conference on ME in children which is to be held in London on Tuesday May 22nd. The conference is aimed at GPs, Paediatricians, hospital doctors and community paediatricians.
The main speaker will be Paediatrician Dr David Bell from the USA. If you have a child with ME you may like to pass details of the day on to your GP or other medical professional involved in your child’s care. For more information see New Moves on the AfME website.
Don't forget about our helplines.
Welfare benefits are a complicated subject. Our helplines can give basic information and tell you about the experiences of other people with ME/CFS, but we usually pass people on to organisations like DIAL, CAB, and the council's Welfare Rights Unit to deal with the details. If you feel able to do a bit of research yourself, however, we recommend the Disability Rights Handbook, which is really the "bible" for all matters pertaining to welfare benefits. For more information about this go to the Disability Alliance's publications webpage or phone them on 020 7247 8776.
Action for ME, one of the two national organisations supporting people with ME/CFS recently approached us to help them raise funds for their work.
We decided that the best way to help was to remind all our members of the benefit of joining Action for ME. Membership costs £15 per year and, if you join using the enclosed group introduction form, £5.00 of this will go to the Leeds & District ME Group.
We realise that not everyone can afford £15, but if you do have the money, it is certainly worth considering the benefits of membership. These include:
Additionally, Action for ME funds research into ME/CFS, campaigns on our behalf and produces a large range of fact sheets about ME/CFS and related matters. It is also worth bearing in mind that the more members the organisation has, the stronger is their voice when they speak for us in consultations with the government and the medical profession.
The other main national patient support organisation is the ME Association. The main difference between the two organisations is that Action for ME provides more information on complementary therapies, whereas the ME Association places the emphasis on conventional medicine. The phone numbers of both organisations can be found on our Useful Numbers list.
If you buy books or music etc. from Amazon, try accessing the Amazon web site via Action for ME. That way, a donation will be made to Action for ME for every purchase you make!
As members of the West Yorkshire Playhouse Community Network Scheme we are entitled to free access to the new Cyber Café at the Playhouse. There is a tutor on hand to help beginners and trade tips with more experienced users.
Access is available on Tuesdays from 10am - 1pm. You need to book your place through the Playhouse box office, 0113 213 7700.
You will need to quote our network number, which is in the printed version of this Newsletter. If you can’t make Tuesdays, an alternative session can be arranged - phone Lou Ford, 0113 213 7800 to discuss this.
Thank you very much to the Northern Rock Foundation (the sponsors of our newsletter) for their recent grant of £800.
Our thanks also to Leeds City Council for their grant of £100 which funded the cost of the yoga classes held last year.
Thank you very much to Kay Louise Garlick (Diane Heald’s daughter) who very kindly ran a raffle at First Direct, Leeds, to raise money for group funds. Due to Kay Louise’s hard work and the generous staff of First Direct a sum of £120 was raised. Our thanks to everyone involved. Thank you to those of you who donated raffle prizes.
Kay Louise also contacted a charity in London who were offering to make donations matching money made by charity fund-raisers. The Pound for Pound Staff Charity Scheme at HSBC Holdings PLC, London very kindly matched the amount raised by the raffle up to £100 - Thank you very much to HSBC.
Thank you to those of you who have purchased greeting cards and knitted toys
If you are over 60 or receive a state disability benefit, such as Incapacity Benefit or Disability Living Allowance, you will be eligible for an annual free gas check if you:
The check will show whether your gas central heating and/or appliances are safe to use. The check consists of a basic examination and includes any necessary adjustments up to the value of £2.50 plus VAT (!!) "The free gas safety check is not a substitute for servicing".
To register for the check, contact your gas supplier and ask if you can go on their "special register". They will send you a form to complete. If you have any problems, phone Energy Watch on 0645 060708.
If you are eligible for the check, you can also ask to be included in a special password scheme to identify authorised officers from the gas company when they call at your home.
A recent ruling has made it easier for people with ME to get the higher rate mobility component of Disability Living Allowance.
Decision makers have now been told to assume that mobility problems in ME are due to physical rather than psychological disablement - even if an examination reveals no physical findings.
If you have been refused the higher rate mobility component in the past on the grounds that your ME/CFS was not a physical disability, you may now be able to appeal. Details are in the Summer 2000 edition of Disability Rights Bulletin, which you may be able to obtain from the Disability Alliance.
This is a voluntary service run by women for women. It can provide information on health matters, free confidential counselling & low-cost complementary therapies plus courses & support groups.
Well Women Centre, 6 Cheapside, Wakefield, WF1 2SD
Opening hours: Mon 5pm-8pm, Fri 10am-1pm. Answerphone outside opening hours.
One of our members needs help with gardening duties which he is not able to do himself. Does anyone know of a good gardener who would be able to travel to Whinmoor (Leeds 14)?
It would need to be someone who is trustworthy and able to work without supervision. If you can help, please get in touch with Simon who will pass the information on.
ME can be very isolating. Old friends can drop by the wayside and new ones can be hard to come by. Many local groups exist to help people to make new social contacts, because in the modern world making friends is a growing problem for "fit" people as well. Some of the groups activities will be too active for most people with ME but they all organise less strenuous events as well, such as meals out, pub nights, trips to the theatre and cinema etc., which some of you might be able to manage.
Here are the details of the groups we’ve been able to find. If you know of any others, please contact Chris M., 0113 266 1150 and we’ll feature them in the next newsletter. If you decide to try one of the groups, she’d also be interested in any feedback on how you get on!
A social group for people aged 18 and over; there are several branches throughout Leeds and they organise a wide variety of social activities. Contact Elaine, 01924 870657.
A multi-activity and social club for young professionals aged 25-40ish. Contact Jonathan on 01943 461905 or jonathan@otley.co.uk.
A professionally run multi-activity club for all over-18s. Contact Christine Darley, 0113 271 8535.
A group of friends to help singles of 40 plus to have or to return to a meaningful social life. Contact Roger Curtis, 0113 289 2549.
A national professionally run organisation with local branches which provide information and facilities for people to enhance their social life and widen their circle of friends and contacts. Visit the Nexus website or contact David Ascott between 10:30am and 6:30pm on 0113 244 5186.
A Leeds based group which provides social activities for mature single people in the 40-to-infinity age group and includes meetings in member’s homes. You can contact the group via their website, www.nucleus-singles.co.uk.
A friendship group for the over 50’s. There are speakers at each meeting. Also they have trips, specialist groups, jazz, bowls, dining-out etc. Call ARP/050 (Association of Retired People), 020 7828 0500 for a contact number or visit the ARP/050 website.
There are several groups, organising numerous social activities. OUT 25 (for gay men and women under 25), Leeds Gay Community Group (which attracts older gay men) and Affirmable (for gay men of all ages who have mental health issues) can all be contacted at MESMAC, 0113 244 4209.
Leeds Lesbian, Gay and Bisexual Switchboard on 0113 245 3588 can also put you in touch with groups that have social activities.
A postal survey of the members of local groups associated with either Action for ME or the ME Association was carried out between June and August 2000, by Dr Lesley Cooper. A total of 730 questionnaires were distributed and 347 respondents replied (47% response rate).
The main aims of the survey were to investigate the issues and concerns of ME patients as well as their experience of services and treatments. The study found that many of the previously voiced concerns on behalf of ME patients were substantiated. Further studies might want to investigate these issues in more detail.
A copy of this report was sent to the Chief Medical Officer for discussion by the working group on ME/CFS at their meeting held in December of last year.
(Information from "Perspectives" - the magazine of the ME Association)
Thank you to those of you from this group who returned your questionnaires.
We have mentioned in previous newsletters about free sessions of natural healing in Leeds. Now we have news of a session in Wakefield: every Thursday from 10am - 12.30pm at:
The Friends Meeting House, Thornhill Street, Off George Street, Wakefield WF1 1NQ
The healing is by Registered Healers and is open to everyone.
In the last newsletter we mentioned a new healing opportunity in the Headingley area of Leeds but missed out the day the sessions were held - sorry! They're from 12pm - 3pm on Thursdays at:
All Hallows Community Hall and café, Regent Terrace, Leeds LS6 1NP.
Does anyone know of or have experience of a good healer who will travel to ME sufferer’s homes to give natural healing?
It would be great to find someone who was willing to provide this service for those of our members unable to get out of the house for healing. We are ideally looking for someone who could travel to the Whinmoor area of Leeds (Leeds 14), but would like to hear of anyone who could provide this sort or service to the areas covered by our membership.
Gerry Linden, the mercury free dentist we mentioned in a previous newsletter, has moved to a different practice. He's now in Pudsey and the practice number is 0113 257 0921. (As well as doing mercury extractions, Gerry also understands the problems which people with ME tend to have with anaesthetics).
Some people believe that having mercury fillings removed from your mouth can help ME by reducing the toxic load on the body. Others believe that the quantities of mercury released during extractions can render the process counter-productive.
A good mercury free dentist such as Gerry will take all possible precautions during the extractions, but this is still a therapy which should be approached with caution.
The 25% ME Group is investigating multiple cases of ME. If you would be willing to fill in a short questionnaire, you can obtain a copy from their website.
Hi, my name is Sarah Keeler and I am now at Bath University on my placement year. I have suffered from ME myself for over ten years and as part of my placement I am helping a lecturer (and fellow ME sufferer) with some research on ME.
We are planning to focus this research on the particular problems that young people face (up to age 25) and are looking for volunteers who would be willing to help us. This would involve keeping a diary for 30 days by writing a bit each day and then rating your symptoms, a carer could help you with this if you are not up to it yourself.
If you think you could help us with this please contact me and I will send you some more information.
Please remember to let us know if you change your address.
Please remember that this is your newsletter and we welcome your contributions!
Disclaimer: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.
