NEWSLETTER
July 2000
This is the time of year when we ask our members to make a small voluntary contribution to our running costs. If you visit this web site often and find it useful, perhaps you would also consider making a contribution to our funds? Please print out and complete a copy of our donation form and send it with your make cheque/postal order payable to Leeds & District M.E. Group to our treasurer, David Johnson, at 8 Richmond Terrace, Pudsey, Leeds, LS28 9BY.
In April, new rules for the Gift Aid Scheme were introduced. If you pay Income Tax or Capital Gains Tax, you can help the group even more without it costing you an extra penny. Just tick the Gift Aid declaration on the form to indicate that you wish your donation to be treated as a Gift Aid Donation. We can then reclaim the tax paid on the amount - an extra 28 pence for every £1 - from the Inland Revenue. An excellent way to increase Government support for ME!
Remember, to help in this way you must pay enough Income or Capital Gains Tax to cover the total amount to be reclaimed from ALL of your Gift Aid Donations in the tax year. If you have any questions about the Gift Aid Scheme, please contact David Johnson. Thank you for your support.
Some of you, who have been randomly selected from our membership list, will have received a questionnaire with this mailing from Dr Lesley Cooper. This survey is intended to provide important material for the Chief Medical Officer's Working Group on ME/CFS, so do please try to complete and return the questionnaire if you are able!
This group is a national group for severely affected ME people. If you are bed-ridden, house bound or virtually house bound you can receive two newsletters per year plus a contact list so that you are able to get in touch with others in a similar situation. To find out more about the 25% ME Group, and how to join, please send a sae to:
Simon Lawrence, 4 Douglas Court, Beach Road, Troon Ayrshire, KA10 6SQThe group also raises funds for research into ME. They sell the following products:
To make a purchase send order to:
Mr Kennedy, 18 Grasmere Road, Royton, Oldham, Lancs OL2 6SRThere is a new support network/penpal scheme for gays and lesbians affected by ME. To find out more contact:
Action for ME PO Box 1302, Wells, Somerset, BA5 1YEThis group, as it's name suggests, is a penpal group for those who are 26 years of age and over. It is run by volunteers who themselves have ME and is a great way of meeting people who share your interests and keeping in touch with them by letter, phone or e-mail. If you would like to know more please email Mandy Jeffcock.
MEGA produce a junior newsletter (under 16's) and a more adult one (16 - 25 year age group.) They also run a penpal scheme. If you would be interested in joining the group, please contact the ME Association, 01375 642466 or e-mail mega@meaypg.cix.co.uk
Free information, support and counselling for the under 25s is on offer at the Cardigan Centre, Cardigan Road, Leeds. From information about courses to advice about relationships and drugs, trained counsellors are on hand. Tel: 0113 2749959.
The Group Annual General Meeting was held in May. The following people were elected on to the group's executive committee and will undertake the jobs listed below during the coming year.
Valerie Bloom, Anne Cogan and Tim Cogan stood down from the committee at the AGM. Anne and Tim have been an essential part of the committee during the six and a half years they have been involved. They have fulfilled many roles during that time and Tim has served as treasurer throughout. They have also shown great hospitality in opening up their home for committee meetings and mailing sessions. Valerie has been with us for two years and has contributed many ideas to the committee. Simon thanked them all for their work on behalf of the group. Thanks were also expressed to Chris M. for her work as book librarian for two years and to Nick Iredale for being our group secretary for the past year. Both Chris and Nick will stay on the committee in other roles: Chris will continue to organise theatre trips and Nick will continue to run our website.
This is also a good time to thank Ted Mellor, who kept our membership details for several years and produced labels and envelopes for us for a full eight years! Modern technology now means we have been able to relieve Ted of his duties. We would like to take this opportunity to express our very grateful thanks for all his hard work.
On May 17th, local ME sufferers had the chance to meet with Keith Salisbury, the Chief Executive of Wakefield Health Authority, and Dr Colin Pollock, Director of Public Health. The meeting was well attended and people took the opportunity to talk about the problems they had experienced with NHS treatment for ME/CFS in the Wakefield area. Mr Salisbury and Dr Pollock listened attentively and will shortly report back to a further meeting to let us know what they are going to do to change things for the better.
Many thanks to Trevor Wainwright for initiating the meeting, to Steve Theobold for hosting it and to all of you who turned up on the night to have your say - well done! Those of you with a WF post code will receive notification of the second meeting as soon as we have the details. Do try to get along to that - we need to show we care about getting some decent service for people with ME in the Wakefield Health Authority Area.
The All Work Test for Incapacity Benefit is now to be known as the Personal Capability Assessment (PCA). This is the same as the All Work Test but with one important difference; if you attend for a medical examination, the doctor will prepare two reports instead of one. The first of these, as before, will be sent to the Benefits Agency to advise on whether you are incapable of work and therefore eligible for benefit. The second report is a new one and this will be sent to the claimant's "one" personal adviser whose task is to help the client return to the "labour market".
Depending on the severity of your condition, your "one" adviser may call you to attend a work-focused interview to investigate whether something can be done to help you return to work.
According to the Disability Rights Bulletin (the source of our information):
Staff from the "one" project are instructed not to describe the interview requirement as compulsory. The term "full participation" is considered to be a better and more helpful description of the service. "One" project managers believe that "the term compulsion can be intimidating, will engender anxiety and will not help to promote a meaningful dialogue with a personal adviser".
Nevertheless, the bottom line is that if you do not attend for your interview, your benefit will either be refused or reduced.
According to Action For ME, however, any ideas which emerge from the interview, such as attendance on a training course for instance, will be suggestions only and your benefit will not be affected if you do not comply with them (but please do double check this if the event arises!)
Until April 2001, this new system will only operate in certain pilot areas but Leeds (not Wakefield) is one of them. According to Leeds City Council's Welfare Rights Unit, the "one" offices are currently so busy that existing claimants are unlikely to be called for an interview with a "one" adviser in the near future - but new claimants in the Leeds area can expect to be called.
Thanks to Helen C. for researching this issue.
There will be spot checks later this year on claimants for Incapacity Benefit. Review Officers will be knocking on 1,400 doors at random, with set questions to detect customer error and fraud. You will only be notified in advance if you have a mental health problem, need an interpreter or have an appointee. No-one will be contacted within four weeks of having a Personal Capability Assessment. The Review Officer will refer the case back to the Benefits Agency if they believe there is error or fraud involved. No-one will have their benefits reduced or stopped just on the basis of the visit.
Disability Living Allowance claimants may also be contacted for review under the successor to the Benefits Integrity Project.
(Information from the Stockport ME Group Newsletter. To help reduce any sense of paranoia, bear in mind that these "review officers" will be calling on only 1,400 people in the whole of the country.)
Dr Sarah Myhill, Medical Adviser to Action for ME, has expressed an interest in travelling round to local groups to offer consultations. The price for these consultations would be £60 to £90 (depending on the number of patients involved.) Any blood tests would be extra (e.g. red cell magnesium £16, thyroid function £19.) Dr Myhill's information booklet on ME/CFS (which is in our library) would also be available for £10. The consultations would take place partly in a group setting.
Dr Myhill offers a wide range of treatments and this initiative would offer the first opportunity to consult a treatment-orientated doctor specialising in ME/CFS in our area for several years. We would be interested in helping to organise local consultations with Dr Myhill (probably in, or close to, the centre of Leeds) but we need to know if there would be sufficient interest to make it worthwhile.
If you live locally and you would be interested in such a consultation, please let us know. Contact Simon or, if you would prefer to write, drop him a line at 47 Birkdale Drive, Leeds LS17 7RU. Also contact Simon if you would like more details. If we get sufficient response, we will do our best to set up the consultations.
You may have read in the Action For ME newsletter about the work of Dr Jacob Teitelbaum in America. He uses a broad based treatment for ME and Fibromyalgia, with drugs, herbal medicine, vitamin/mineral supplements, homeopathy etc to "hit all the systems at once". Apparently a double-blind trial on 72 US patients showed good improvement in 80% of the people in the active treatment groups.
Dr Andy Wright, Medical Adviser to Action For ME, is now using Dr Teitelbaum's approach at his clinic in Bolton. The basic cost of the treatment is about £1000. If, like most of us, you don't have that sort of money to spare but are nevertheless interested in Dr Teitelbaum's work, there is a chance that you may be able to take part in a forthcoming UK research project which seeks to replicate Dr Teitelbaums findings. This is to be a multi-centre trial organised by Dr Ian Hyams (formerly of the National ME Centre) and Dr Wright's clinic in Bolton is likely to be one of the centres involved.
Dr Hyams is concerned that severely affected ME patients are often excluded from research studies due to inaccessibility and he is therefore going to use a mobile service to allow them to be included in the trial.
Those participating in the trial must meet strict research criteria which are too long to include here, so, if you think you might be interested in taking part, please phone Simon for further details (Information from the Stockport ME Group Newsletter.)
At the start of April, responsibility for the Leeds Fatigue Clinic was transferred from Community and Mental Health Services to the Division of Acute Medicine and Cardiovascular Services.
One beneficial outcome of this is that the outpatients service offered by the occupational therapists is likely to be transferred away from the Roundhay Wing to a more appropriate location, though a new home has yet to be found for the clinic's inpatient facilities.
Consultant Liaison Psychiatrist Dr Sean Lynch left Leeds at the beginning of March and a replacement is expected to be recruited shortly. A new occupational therapist has recently been appointed but this will only bring the staff back up to the same level as a year ago and further action is needed to reduce waiting times to an acceptable level.
Following our representations, the Leeds Community Health Council are in contact with the Hospitals' Trust to try to improve the situation.
Thank you to everyone concerned.
If you think your local shop/pub etc would be willing to have one of our collection boxes please contact our Treasurer, David Johnson.
Our thanks go to Leeds City Council Health Action Zone for a grant of £150. This has funded the Guided Imagery Sessions run by the group this Spring.
During the year it is usually necessary for us to organise local supermarket coin collections to boost group funds and this year is no exception! We have two such collections planned during the next few months and we need your help. Volunteers are needed to sit with a collection tin for no more than an hour. It isn't over strenuous and can be quite good fun! Two collectors are needed per shift, so you can either come along with a friend or we will pair you up with another group member (so you see it is also a good way to get to know other group members!)
The collections are taking place on the following dates:
Please consider volunteering, we really need your help. Please don't think someone else will, because invariably they don't! The sooner you volunteer the better choice of time slot you will have.
Although Tim Cogan has left the committee, he has very kindly said he will organise the collection days for us. As soon as this newsletter is mailed to you, Tim will be waiting by his phone for your call - please don't disappoint him! We realise that because of the fluctuating nature of ME it is difficult to know how you will be on the day, but please let us know now (particularly for the July collection at Tesco) if you would be willing to help - health permitting.
One of our members has written to say she would like to hear from other ME sufferers who have tips on coping with the menopause (other than HRT). If you can help please write to Ms Chris M. at 47 Birkdale Drive, Leeds LS17 7RU who will forward the letters. If we get a good selection of tips hopefully we can publish them in a future newsletter so everyone can benefit.
Thanks to Julie Russ who sent us the following selection of tips:
Most electrical stores sell the Panasonic lightweight vacuum cleaner. This costs no more than a basic vacuum cleaner but may be easier for ME sufferers to use rather than the usual heavier cleaners.
The Home Free Catalogue is now selling a Whirl Air Bath (identical to the Balson Air Bath) This costs £299 which can be paid in monthly instalments. This kind of bath may help with relieving muscle pain. For more information phone 0870 908 7030.
"I have found a two way intercom very helpful when bed bound. It saves having to shout downstairs for things I need. They can be bought from Tandy Electrical Stores or ask at any other electrical store. It plugs into a normal electric socket."
Are you concerned about the effect electrical and magnetic fields in your home could be having on your health? If so Yorkshire Electricity may be able to help! To discuss this matter further contact Peter Glaholm (Environmental Manager) 01977 605862 at Yorkshire Electricity in Castleford who will be happy to answer your questions. The Electricity Board will measure the electrical and magnetic fields in your home free of charge.
If you are a carer for someone with ME, or in other circumstances, or you have a carer yourself, Leeds Carers Centre may be able to provide you with support and advice. Often the carer is forgotten when illness strikes, the centre offers an outlet for those who find themselves in this often difficult situation For more information phone 0113 246 8338 (Monday - Friday 9.30am - 4.30pm) or call in on Tuesday, Wednesday or Thursday (9.30am - 4.30pm) at First Floor, Leeming House, Vicar Lane, Leeds LS2 7JF.
If you have a carer, friend or relative who would like to meet others, a group has now been formed in Leeds. Informal meetings usually take place every few months at St James' Hospital on Saturday afternoons. The group is run by the Occupational Therapists who work in the Chronic Fatigue Unit. Whether you are looking for information, advice or support these are relaxed, friendly meetings. For more details or to be put on the mailing list, contact either:
As we finalise our newsletter, we've noticed some new research news in the spring issue of a US newsletter called "CFIDS & Fibromyalgia Health Watch". On the plus side they report that researchers in France and Belgium have developed a new "one-step diagnostic test" for CFS. "A radioactive probe was used to label 2-5A binding proteins in cell extracts" and apparently they found a particular binding protein which was exclusive to CFS. Whatever this means exactly, it doesn't sound like the sort of test you're likely to get on the NHS and, of course, previous announcements of diagnostic tests have proved to be unfounded. But if this one does work, it could nevertheless be a very important step forward.
Less encouragingly, the newsletter reports that the results of the recent trial of the drug galanthamine, in which the Leeds Fatigue Unit was at one stage involved, are not going to show "a positive statistical effect". Presumably this means that the drug has not been shown to be effective in a majority of cases.
Dr Charles Shepherd, of the ME Association is currently in the process of taking careful notes of NHS hospital consultants who are either rude or unhelpful or prescribe totally inappropriate forms of graded exercise to people with ME/CFS, which then provoke a relapse. Brief details regarding incidents of rudeness or other inappropriate incidents can be sent (anonymously if preferred) to Dr Shepherd at
The ME Association, 4 Corringham Road, Stanford le hope, Essex SS17 OAHMedicAlert bracelets are worn by people with medical conditions which may be life threatening. This could include the following: anyone with diabetes, a tendency to seizures or Alzheimer's, people reliant on specific and regular medications, organ transplant patients or people with severe allergies to foods, medications or insect bites. The person concerned wears the bracelet at all times. It contains information about their medical condition and an emergency number to contact MedicAlert who have access to the wearers medical information.
The idea is that if the wearer collapses and is found severely injured or unconscious and unable to tell you how to help them, the details in the bracelet can give you, or a medical team, information which could save their lives. If you or someone you know has severe allergies which could cause anaphylactic shock or are diabetic etc. and you would like to know more about MedicAlert please contact them for details on 020 7833 3034. A bracelet or necklet costs from £19.95, plus an annual registration fee of £10.
Some health food shops, such as the ones at Headingley and Oakwood, have started selling various vegetarian pâtés made by a new restaurant that has opened in Leeds called "Le East". These are very tasty and seem to be free of wheat, dairy products, yeast and additives (though do check the labels just in case!)
For those people who have to avoid wheat, most of the wheat free pastas now seem to be available at the major supermarkets e.g. Tesco, Safeway and Sainsburys. Tesco also sell some very tasty coconut cookies which are wheat-free - Tesco's own brand.
Allergyfree Direct is a mail order company which sells wheat and dairy free products. Although many of the supermarkets and health food shops sell foods suitable for people with food intolerances, this is no help if you are unable to get out to the shops. This is where Allergyfree Direct may be very useful. They can be contacted on 01865 722003, fax 01865 244134, or on the web at www.allergyfreedirect.co.uk They now accept payment for products in their catalogue by using switch and visa cards. They sell many different flours, beans and pulses, cereals, flakes and grains and fruits, nuts and seeds - which are all organic. They also stock cakes, biscuits and soups.
Each time we mail our newsletter, many are returned because people are failing to notify us when they move. This is obviously a waste of group funds, so please try and remember to contact us when your details change.
Please send items for inclusion in the November Newsletter, by September 15th.
March 2000 Newsletter