NEWSLETTER
MARCH 2002
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If you would like to meet up with fellow group members, join us at the West Yorkshire Playhouse Café on the third Tuesday of the month. The meetings start at 1pm and usually continue for a couple of hours. If you haven't joined us before you can identify the group by looking for the sunflower on our table. The meetings are very informal and provide you with the opportunity to swap ME information with fellow sufferers, or if you prefer, talk about something completely different! You will also be able to browse through and borrow from a selection of books and tapes from our libraries. The next meetings will take place on the following dates: Tuesday March 19th, Tuesday April 16th, Tuesday May 21st and Tuesday June 18th.
If you would like to make contact with someone before coming along to a meeting please contact (Ms) Chris M. , Pete Clavane or David B .
Our evening social meetings, which are also held at the West Yorkshire Playhouse in the café/bar, are gaining in popularity. If you find it difficult to get to the afternoon meetings this is an alternative opportunity for you to socialise with other group members.
We usually meet on the first Monday of the month, however as this means the meetings for April, May and June would fall on a bank holiday, this quarter we have had to change some meetings to the first Wednesday of the month. Please check the dates carefully before turning up! The meetings run from 7.45pm to 9.45pm and will take place on the following dates: Wednesday April 3rd, Wednesday May 1st, Wednesday June 5th and Monday July 1st.
The yellow sunflower will be on our table so that you can identify us. If you would like further information about these meetings or would just like to make contact with someone before coming along please contact Tamsin or David R or Tim Dewhurst .
The group AGM will take place on Monday 22nd April at 7.30pm in the large hall at the Friends Meeting House, 136 Street Lane, Leeds 8. All members of the Leeds & District ME Group are invited to attend the meeting. Once the business of the meeting is dealt with there will be the opportunity to have a drink and a chat and to browse through our book and tape libraries.
An agenda for the meeting is enclosed with this mailing. As you can see from the agenda, the group hopes to amend the constitution to expand the number of members allowed on the executive committee. If you would like to join the committee you will need to complete the nomination form (on the reverse side of the agenda). If you are considering helping us out on the committee and would like to talk to someone about this, please contact Jane Ashworth.
Simon will be standing down from the executive committee at the AGM. This means there will be a vacancy for the role of Group Chairman (please see item below - Fit Volunteers Still Urgently Needed!) We are very pleased to say that although Simon is leaving the committee, he will continue in his role as a Helpline Contact.
As you are probably aware, the report of the Chief Medical Officer's Working Group on CFS/M.E. was released on the 11th January. The Working Group was set up in 1998 to review management and practice in the field of CFS/M.E. with the aim of providing guidance for professionals, patients, and carers to improve the quality of care and treatment.
The decision of some participants, most notably psychiatrists, not to endorse the final report has allowed some sections of the medical press to downplay the importance of the report, but it must nevertheless be regarded as a step forward in the long struggle to promote a true understanding of the condition.
Speaking on the day of the report's publication, the Chief Medical Officer, Sir Liam Donaldson said:
"This has been a disease in the wilderness. Sufferers have often been ignored, not always taken seriously, labelled sometimes as hypochondriacs and urged to get better on their own. From today, all that changes. This is a real condition, affecting real people. We need to move forward."
Chris Clark, Chief Executive of Action for M.E. said:
"It's not the end of the road, but as far as we are concerned it is a breakthrough that the government is recognising the severity of the condition."
The report's findings include the following:
The above highlights have been extracted from a 40 page summary of the report with responses by Action for M.E., which is available from Action for M.E. or can be downloaded from their web site: www.afme.org.uk The full report (about 140 pages!) can be downloaded from www.doh.gov.uk/cmo/publications.htm
Following the report, the Department of Health has asked the Medical Research Council to develop a broad strategy for advancing biomedical and health services research on CFS/M.E. An independent scientific advisory committee will be appointed for this purpose. The Department of Health will also ensure that the report's recommendations will be considered in the development of National Service Frameworks for children's services and for adults with long term conditions.
We are currently assessing the implications of the report for our local NHS service provision.
Many thanks to all those members who have come forward to offer their services to the committee. David B, Tim Dewhurst, Sharon Hodkinson, Andrew Lloyd and Claudia van Lelyveld have all joined the committee in recent months. But what with Simon standing down as chairman and the opportunities afforded by the publication of the Chief Medical Officer's Report (see item above), we remain in desperate need of fit people to take on the functions which the rest of us don't have the energy to manage.
We are distributing the following "job ads" as widely as possible. If you know of anyone who might be able to help (someone recently retired perhaps?) please pass these details on to them! If we don't get the volunteers we need, the campaigning needed to improve local services for people with M.E. simply won't get done!
Chairperson - We need someone with experience of running meetings who would be available to attend one evening AGM and 6-8 daytime executive committee meetings each year, plus additional time to liaise with the Group Secretary in arranging meetings, agenda etc. Someone who would also be willing to become more involved in the general administration of the Group would be ideal!
We also need two Liaison Officers to help facilitate improvements in local NHS services following the recent Chief Medical Officer's Report into CFS/ME. People with good communication skills would be ideally placed to represent our interests in consultation with the health authority and other outside agencies. Experience in this area of work would be an added bonus. The hours required will depend to a large extent on developments but it should be possible to adapt these to the needs of the individual. Ideally, we require one Liaison Officer resident in the Leeds district and one in the Wakefield district.
If a volunteer has the necessary time available, it will be possible for one of the Liaison Officers to also serve as Chair.
The Leeds & District ME Group is an equal opportunities organisation. This means that membership of the group and the use of its' services are open to people from all sections of the community. We now have a written Equal Opportunities Policy to reflect this commitment. A copy of this is enclosed with this mailing. If you have any concerns or queries regarding the policy, please contact Claudia van Lelyveld
The Committee has organised two Supermarket box collections, to raise group funds, which will be taking place during the next few months. Volunteers are required to do one hour collecting stints. You will be able to sit down throughout the collection and will work in pairs.
Usually about 90 per cent of volunteer collectors are committee members, but we are all ME sufferers too, so we would be very grateful if some of you and/or your friends and family could volunteer to help.
The collections are taking place on the following dates:
If you are able to help us please contact Tamsin or Pete Clavane .
Thank you to Kay-Louise Garlick (Diane Heald's daughter) who for the second year running organised a Christmas raffle at her place of work, First Direct, Leeds. The very generous staff helped her to raise £115.00 for group funds. This was matched by a further £115.00 donation made by HSBC Pound-for-Pound Staff Charity Scheme 2001. Our thanks to everyone involved for their generosity. Thanks also to those of you who donated raffle prizes.
Sale of knitted toys - £75.00
£13
Thank you to everyone above for their contributions to group funds.
For a number of years now the group has co-operated with Leeds University Medical School on a project involving first year medical students. Volunteers from the membership have agreed to be visited in their home by two students who talk to them about the effects of living with a chronic illness. The students then have to present the information to their colleagues (maintaining patient confidentiality at all times).
We feel this is an excellent opportunity to educate the doctors of the future about ME. Most people who take part in this find it a positive experience and it is something the students seem to enjoy too.
Thank you to everyone who agreed to see medical students this year. Our thanks also go to Leeds University for their cheque for £60 - a thank you for taking part in this project last year.
This trust has been set up to provide much-needed specialised long-term residential accommodation for people severely affected by ME. At present they are raising funds to open their first centre. Please get in touch with them if you wish to find out more or to make a donation or to help them raise funds.
You can become a 'Friend of MEACH' for £5 per year minimum subscription. or
Those of you with Internet access can learn about pacing and other coping strategies for ME through an eight-session email discussion group involving ten to fifteen people. They say:
"The class is not a "chat" and does not meet at a specific time. Rather, you receive a lesson each week and respond sometime during the following seven days. The lesson and your responses are sent to all group members using an email list service."
Post-class options are also available. The site is based in America and web address is http://home.flash.net/~brucepa/course.htm
Obviously we cannot vouch for the content of this course, but from the information given it seems to be similar to what is taught at the Leeds Chronic Fatigue Service. The latter's in-person service would seem to be preferable (apart from anything else, it's free!) but if you can't get to the fatigue service for any reason, this internet course might provide a viable alternative.
Don't forget that the Leeds Chronic Fatigue Service (based at Seacroft Hospital) can be accessed via your GP. Ask for a referral to Dr Philip Stanley at Seacroft Hospital, Leeds.
For those of you with internet access, www.caring-matters.dial.pipex.com provides information on carers' rights and UK-wide links to local carer groups.
Don't forget that there is also information on local carers' groups on our useful numbers list.
The CFS Foundation, which we mentioned in the last newsletter, have recently moved their offices to CFS Research Foundation, 2 The Briars, Sarratt, Rickmansworth, Herts. WD3 6AU .
Another change of address: The Welfare Rights Unit has moved from Great George Street to:
The Welfare Rights Unit, Selectapost 29, 116 York Road, Leeds LS9 9AA
.
Westcare UK has a new telephone support service. It is staffed by fully trained volunteers/staff, providing support, information and advice on CFS/ME for anyone affected (sufferers and carers). The service is a member of the Telephone Helplines Association, providing quality and confidence for callers to Helplines. The line is open between 11am and 1pm, Monday to Friday .
Last year the Women's Post section of the Yorkshire Post ran an article on disabled mothers. This interesting article, written by Sharon Dale, featured two local mothers including one with ME. The article illustrates the difficulties experienced by disabled parents in gaining access to help with childcare.
The help received seems largely to depend on your individual social worker and/or where you live. The best solution to finding help and support seems to be the Direct Payments Scheme which enables parents to hire their own help. However even if you are eligible for this scheme you often have to fight to get it. The Department of Health says that they are looking at the problems of disabled parenting and have issued guidelines on the Direct Payments scheme.
If you are considering becoming a parent and are worried about how your ME will affect your ability to cope The Disabled Parents Network may be able to help, contact them at PO Box 5876, Towcester, NW12 7NZ .
A reminder that Action for ME have a pregnancy support group. PregNet offers support, advice and a network of contacts for those with ME contemplating pregnancy, going through pregnancy or are new to parenting - dads as well as mums with ME. The PregNet website offers a frequently-asked questions section with responses by a midwife with ME, and includes information from professionals as well as personal experiences. PregNet members also receive a newsletter three to four times a year and a contact list so you can get in touch with others in a similar situation for mutual support.
Anyone can join, you don't have to be an AFME member. Just send a cheque for £10 payable to Action for ME to AFME, PO Box 1302, Wells, BA5 1YE or call the Wells office
Information taken from "InterAction" Issue 38 Sept. 2001 - the AFME publication.
Many ME sufferers are either too unwell to get out to the hairdressers or find it easier to have their hair done in their own home. As a result we frequently get asked if we can recommend a mobile hairdresser. Unfortunately we only know of one who is already very busy. We would therefore love to hear from you if you know of any other hairdressers whose details we could pass on to other members.
We need recommendations from all areas of both Leeds and Wakefield. Please send your information to Jane Ashworth and please check that the hairdresser concerned is happy to be advertised in our next newsletter and/or on our web site.
Tesco have recently launched a new range of products for people with food intolerances or allergies. The new 'Free From' range offers 100 gluten and wheat free foods including bread, pasta, pizza, cereals, biscuits, desserts, ready-meals and snacks. Some of these products are also dairy, soya, egg, maize or yeast free. The products are in their own section or among the frozen foods. Please check your local store for availability. Both the Leeds stores, at Roundhay Road and Seacroft, stock the range.
The British Red Cross have just opened a new Medical Loan Outlet at 603a Stanningley Road, Bramley, Leeds LS 13 4EL . Their Office is open from 10.00am to 2.30pm, Monday to Friday. The centre is available to the public and health professionals. The service is free, but donations are welcome to assist in the maintenance of equipment. This is a useful service for the short-term requirement of a wheelchair or commode.
The Pain Society produces a free booklet on managing pain, what treatments are available on the NHS and where to get help; send a SAE to 9 Bedford Square, London WC1B 3RA.
For a directory of NHS specialists around the country, specialising in treating different types of pain and including a list of local support groups, please send £5 (cheques payable to College of Health) to St. Margaret's House, 21 Old Ford Road, London E2 9PL or call the Health Information Service
10am - 1pm, Monday - Thursday
Information from InterAction, the Action for ME magazine.
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.
