NEWSLETTER
March 2000
This year our AGM will be held at the home of Mary Lance.
After the items on the agenda are dealt with there will be the usual chance to chat and have refreshments. For further information about this meeting please contact Simon.
From March 27th, the group will be running Guided Imagery Relaxation Sessions, for Leeds ME Group members.
In these sessions, you will be asked to sit or lie down (as you wish) and be taken on a journey in your mind to promote healing and relaxation. The sessions will be led by Dr Alan Balfour, whose power to calm and relax has already been experienced by many of our members.
So come along and give your mind and body a treat! All this and the chance to stay for a cuppa and a chat afterwards . . . How can you stay away? There will be no charge for these sessions but donations to the group of 50p or more would be welcome. Each session is complete in itself so you don't have to come every time. If you wish to lie down, please bring something comfy to lie on.
In association with Women's Health Matters, we are planning another healing afternoon, for women members only. It will be in the Congreve Room at the West Yorkshire Playhouse on Monday the 26th of June, from 1pm to 4pm.
First there will be a relaxation session, followed by refreshments and a chance to chat. Then you can try various therapies yourself, including healing and massage. The whole day is completely free and very enjoyable. Make a note in your diary now, and mark your calendar!
Do you have a carer who would like to meet others? Are you the carer/relative/friend of an ME/CFS sufferer?
A group has been set up by the Leeds Chronic Fatigue Service run by the Occupational Therapists. All carers, relatives and friends are welcome, not just those of Fatigue Clinic patients. Meetings take place at St James' Hospital, Leeds on Saturday afternoons (an easy time to park!) Whether you are looking for information, advice or support these are informal friendly meetings.
The next meeting is on Saturday March 25th, 1.30 - 3.30pm in the Seminar Room, Gledhow Wing, St James' Hospital, when Dr Stanley, Consultant Physician to the fatigue unit will give a short talk and answer your questions. Plus an opportunity to hear from an ME sufferer who has now recovered.
If you would like more details or to be put on the mailing list contact:
Helen C., 
or
Angela Murphy (Occupational Therapist), 0113 206 5127
Click 
to view map.
Dr Les Simpson, who has done research into ME and Fibromyalgia, is giving a talk about his work on Tuesday June 6th, 7.30pm at The Bradley Arms, Beancroft Street, Castleford. Tickets on the door will cost £2.50
For further details please email Yvonne Haycock.
Click to view map.
The Spring Complementary Medicine Festival will take place on Saturday 1st and Sunday 2nd of April 2000, from 10am to 6pm. The venue is the Winter Gardens/Kings Hall, Ilkley, (opposite the Rail and Bus Station.) Admission £2.00 (£1.00 concessions.)
There is a programme of talks and workshops as well as 100 exhibition stands. For more information phone/fax 01943 609454. The dates for the Autumn festival, if you want to make a note in your diary, are Saturday 28th and Sunday 29th October 2000
David Johnson, Julie Whittle and Pete Clavane were recently co-opted on to the group's executive committee. We would like to take this opportunity to welcome them all to the team.
We are also pleased to say that Ann Wells is joining us as a Helpline contact. There will be quite a few changes to the committee over the next few months - we will give you the details of who is actually on the committee and what their particular roles are in the July newsletter.
We would like to express our thanks to the new sponsors of the group newsletter. This newsletter and all newsletters for the next three years will be funded by a grant we have received from the Northern Rock Foundation.
Thank you to everyone who supported the group by making orders from the catalogue and for asking friends and relatives to put their orders in too. We are very grateful to Anne Cogan who has done a wonderful job organising the Webb Ivory fund-raising for many years. This has enabled us to raise a lot of money for group funds.
Anne would now like to take a well earned break from this job so we need a volunteer to take over the job from this year.
Thank you to The Kingston Unity Friendly Trust Rosebud Lodge who allowed us to run the raffle yet again at their Christmas do. They have supported the group in this way for many years and we would like to thank all their members for their generosity.
Diane Heald has run the raffle every year and seems to get more successful every time- so many thanks to Diane. Thank you also to those group members who donated raffle prizes.
Thank you to all the group members who purchased toys at Chi Kung classes - your support is appreciated.
| David Dooler | £5 |
| Anonymous | £50 |
| Anonymous | £5 |
| Miss J Barron | £5 |
Thank you very much to all concerned for your kind donations.
Duty Free Shop, The Ridings Centre, Wakefield £10
Would your local shop or pub etc. be willing to have one of our collection boxes on their counter? If you think you can help, please send us an email
.
We would like to thank the Serious Fraud Office for the computer they recently donated to the group for use by the committee. Thanks also go to the recent donor of a replacement computer for the use of the newsletter editor.
Funding has been received from The Joseph and Mary Hiley Trust to purchase much needed software for use by the membership secretary. Our grateful thanks go to the trust for this donation.
The grants and donations received by everyone mentioned above are vital to a small group like ours. The computer equipment enables us to provide you with a more efficient service and makes life much easier for the committee members who use them- they are all ME sufferers. A big thank you to everyone concerned, your generosity and support is greatly appreciated.
Gerry Linden, a mercury-free dentist, who previously worked with John Roberts, has recently set up a practice in Beeston, Leeds. For further information contact him on 0113 258 7892.
Following a letter which we sent to Leeds Community Health Council detailing shortcomings in the present NHS service provision for ME/CFS. Our chairman Simon was invited to address a meeting of the council, and they have subsequently written on our behalf to the chairman of the Leeds Hospital Trust to ask for his comments!
During the recent stormy passage of the government's Welfare Reform Bill through parliament, we wrote a letter to all the MPs in our area, outlining the problems which we believe the bill will produce for our present and future members.
Unfortunately, we received a rather poor response. Bill O'Brien wrote to say that he found the letter informative and helpful; Hilary Benn and Paul Truswell thanked us for writing; and John Gunnell sent a brief note; but the other eight MP's did not respond at all.
Undeterred by this, we shall be writing again to our MPs in the near future about the All Party Parliamentary Group on ME.
If you have savings but do not pay very much income tax, a change in this spring's budget may apply to you.
Interest in bank or building society accounts is currently taxed at source at the 20% rate. However, if this interest forms part of the first £1500 of your taxable income, you should only be paying 10%. The change means that it is now possible to claim back this overpaid tax. To do so, you need to fill in the form R185, which can be obtained from the local tax office.
If on the other hand, you have savings but are not eligible to pay income tax at all, you can arrange to have your interest paid entirely free of tax by filling in form R85, which can be obtained from your bank or building society.
We hope that this makes sense! If in doubt, try contacting your bank, building society or the CAB.
If you are in a position where a lack of understanding of childhood ME is causing professionals to abuse their power (e.g. court orders, children admitted to hospital against the child's and the parent's wishes etc.) the ME Association Information Department can put you in touch with a parent who has direct experience of these terrible difficulties. Ring them on 01375 642466. We would also like to hear from you ourselves. The Leeds ME Group would also like to hear from local people having this sort of problem - contact Simon.
(Information from the ME Association Groups' Newsletter)
This recently published report provides valuable and vital information about the existence and diagnosis of ME in children and addresses medical issues, educational needs, social services matters and service facilities for all professionals and families who are involved with young people suffering from this illness.
The report is very helpful and is strongly recommended. You can obtain a copy from Dr Anne MacIntyre, 5 Metford Place, Redland, Bristol BS6 7LE. Price £5.00 including postage (within UK).
(Published in the Huddersfield group newsletter, taken from Interaction Sept '98)
Scientists at Harvard Medical School have found that low level lighting before bedtime is vital for a good nights sleep. Low lighting has a sedative effect on the pineal gland which controls melatonin production, so even reading at bedtime could be detrimental and over stimulate the body mentally and physically. Sufferers from insomnia should keep lighting at the level of candlelight for several hours before going to bed. ME sufferers have found this effective - let us know if it works for you!
Does anyone have a good recipe for wheat free pizza bases or know where they can be purchased (other than the Nutricia ones)?
Freephone 0800 66 55 44. Open 9am-7pm.
This service is free and completely confidential, providing a wide range of health information including: How to lead a healthy life, 24 hour taped health information, self-help and support groups, medical conditions and treatments, how and where to get treatment, hospital waiting times, medical procedures and your rights as a patient.
If you feel down or unable to cope then you may find that counselling can help.
WPF Counselling North provides a confidential counselling service at Leeds Bridge House near Leeds City Centre. Clients are asked to pay for counselling but the fee will be based on the client's personal circumstances. To make an appointment or for further information, call 0113 245 0303.
For young people in Leeds aged 13-25, a free counselling service is offered at The Market Place which is at 28 Kirkgate, Leeds 2, near Kirkgate market. They also offer a drop-in service six days a week, if you just want a chat over a hot drink or need some information or support. For further information on The Market Place, call 0113 246 1659.
If you know of any other low cost counselling services in the LS or WF postcode areas, please contact Simon.
The Disability Discrimination Act 1995 gives people with ME the right to challenge discrimination within the area of employment and goods and services. Examples might be if you are being harassed at work due to having to take sick leave or are having trouble getting ill-health retirement or social services provision.
If you feel that you are being discriminated against because of your ME and live in Leeds, the DDA Project may be able to help. They can tell you more about your rights under the Act and provide legal advice and support if you wish to take your case to the County Court or an Industrial Tribunal. You can contact them on 0113 214 3626.
This centre provides a number of services for people with disabilities. These include:
For more information phone 0113 214 3599 or e-mail info@leedscil.org.uk or visit their website.
The Leeds branch of DIAL has moved to The Mary Thornton Suite, Armley Grange Drive, Leeds LS13 3QH, telephone 0113 214 3630. This is in the same offices as the DDA Project.
This unit is part of Leeds City Council's Department of Community Benefits and Rights. It offers free, impartial and confidential advice and support on welfare benefits and rights issues and aims to maximise income to ensure that people receive all the benefits and services available to them.
Do you need help with filling in difficult benefit forms, appeals or tribunals?
Drop in surgeries are located around the city or by appointment in the city centre. Home visits can also be arranged anywhere in the Leeds area if you are too ill to get to one of the surgeries.
For more information, the Welfare Rights Unit is based at the Henry Barran Centre, Amberton Grove, Leeds LS8 3JR, telephone 0113 218 8475. Our Helpline numbers also have information on where the various surgeries are.
Click to view map.
Major changes have been made to the way benefits decisions are made and to the appeals procedure.
Under the old appeal system most decisions were made by the Adjudication Officers (AO's). If you disagreed you could ask the AO to look at it again or ask within three months of the decision for an appeal, heard by an independent tribunal.
Decisions are now being made by officers acting on behalf of the Secretary of State for Social Security. There is then a period of one month only, in which you can challenge the decision by one of three methods; asking for a revision, a supercession or an appeal.
You can ask in person, by phone or in writing for the Secretary of State to look at the decision again. Two articles by Welfare Rights advisers recommend making the request in writing and keeping a copy. A later request for a revision may be made if there were special circumstances for not asking for it within the normal one month limit. You can also ask for a revision at any time if there was an official error on your claim or if you become entitled to an increase in your benefit because you, your partner or child has been awarded another benefit.
A request for a supersession asks for the Secretary of State to have another look at the decision for certain specific reasons: that you had a change in your circumstances: that the decision was mistaken in law; or the decision was made in ignorance or based on a mistake about a material fact. An example of the latter is if you were unable to get medical information from your doctor but are now able to send it in.
Asking for an appeal must be done in writing within a month from the date of the decision. You do not have to request a revision or supersession before appealing, but in practice the time limits for appeals may mean that you have to ask for a supersession or revision. When you ask for an appeal the Secretary of State will automatically look at the decision again, and may revise it instead of sending it to appeal.
The systems for appeals will be the same for all benefits. You will have a choice between a paper and an oral appeal tribunal hearing. An oral hearing is recommended by the Disability Alliance as the best chance of winning an appeal.
It is recommended that you are represented by someone from CAB or Welfare Rights, and that you contact them immediately you are given an adverse decision to make an urgent appointment.
(Information from Stockport ME Group Newsletter.)
Please remember to notify us if you change your address - send your details to our membership secretary
.
Please send items for inclusion in the July newsletter by May 18th.
November '99 Newsletter