NEWSLETTER
NOVEMBER 2002
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Hi, welcome to November's newsletter. This is my first newsletter as editor so I hope that you like it! Thank you to everyone who sent contributions: keep them coming in.
Let me tell you a bit about me. My name is Jane and I live in Rothwell with my husband Rob and cat Timmy. We moved here 3 years ago from Sheffield, but I also lived in Leeds when I was a student.
I have had M.E for about 5 years, although I am sure it had been lurking a lot longer than that. Up until now I have not really played an active part in Leeds M.E Group - although some of you may have seen me on the theatre trips - so I am looking forward to getting to know you all.
There are some changes to the style of the newsletter; I hope you all approve but welcome any comments or suggestions. I have noticed other newsletters include things like stories, jokes, recipes and book reviews, and I would like to hear your views about having such items in the Leeds M.E Group newsletter.
This is the last newsletter that will be sponsored by Northern Rock, many thanks to them for their support over the last 3 years.
The dates for our forthcoming meetings are:
The meetings start at 1pm and 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. 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.
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 have also had evening social meetings at the Playhouse Café/Bar, but these have been temporarily suspended. We hope to start them up again in the new year.
Please remember not to wear perfume, aftershave or hairspray when you are attending a Group session. Some members suffer with chemical sensitivities and can become ill when exposed to even small amounts of perfume.
The Extraordinary General Meeting of the Group took place on 7th August at the West Yorkshire Playhouse. Although the attendance was small, those present expressed their support for the proposed changes in the way the Group is run and the resolution to amend the constitution was passed unanimously.
The amended constitution allows the Committee to set up working groups that include non-committee members and 1 or more committee members. The aim of the change is to enable the involvement of more non-committee volunteers in the running of the Group whilst trying to reduce the workload of committee members.
The appeal for volunteers also received an encouraging response, with 40+ members offering help, mainly with mailing and supermarket collections. A few also offered to take on larger roles; you will notice new names and faces taking over various positions in the coming months. A big thank you to everyone for their offers of help.
Some of our members appeared on the Yorkshire Television Community Link slot in the first week of October in an appeal for additional volunteers from outside the Group. We hope Amanda Sladdin, Andrew Lloyd and David Johnson are enjoying their newfound celebrity status!
The Group would like to express thanks to Heather Clarkson and the Community Link team at Yorkshire Television for the opportunity to make the appeal and all their hard work in preparing the programme. We would also like to acknowledge the wonderful support of Esther Kovarik and her staff at City Business Support UK who handled all the telephone enquiries from those responding to the appeal.
Thank you to everyone for their voluntary subscriptions, fund raising efforts, grants and donations. In the last 4 months these have included:
It's been a busy few months on the committee with some people joining, some people leaving, and some people joining and leaving! So, we would like to say a big thank you for all your hard work to the following people: Jane A, David B, Pete C, Sharon H, Bernie H, Andrew L, Chris M and Laura V. Although they have left the committee, most of these people are still helping the group in a variety of ways, for which we are very grateful.
It's that dreaded time of year again and the search for gifts is on. For many of us this is a particularly difficult time of year, trying to get out shopping and organise festivities.
If the thought of trailing round the shops fills you with dread, many shops now have online shops or catalogues that you can order from;
for catalogue - cards, wrapping, gifts
for catalogue - gifts
for catalogue - gifts
If you do not have a computer at home, remember that you can access the Internet using Sky Digital, at Internet cafés, 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.
However, if you prefer to browse the shops the traditional way, remember most shopping centres have Shopmobility facilities where you can hire a wheelchair to save some of your precious energy. For further details, call the required centre or visit www.justmobility.co.uk/shop
If you would like to make contact with other M.E. sufferers, the Group has a Friendship List. This is a list of fellow members who would like to make contact with others in the Group. An updated Friendship List is mailed out to all those on the list with every newsletter
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 yourself (contact details, hobbies, interests, etc). If you are already on the List and want to change your deatils, or if you want to be removed from the List, then please contact the Membership Secretary. The deadlines for adding and changing information are as follows:
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.
This section has been suggested by Vivienne W. as a way of passing on information and recommendations to each other. Any information you would like to have included should be sent to the Newsletter Editor
.
There are some great ideas here.
IT Cubed Ltd offer parents on a low income refurbished Pentium PC for £130 for their children's homework. Payment by instalments is accepted. Please contact IT Cubed quoting 'education offer' or www.welcome.to/itcubed. (from the Carers Centre Update)
The Leonard Cheshire Foundation has set up a workability project to provide free computers with training for disabled people. The project is aimed at those that want to gain new skills and are hoping to return to some sort of work (paid or voluntary). They would welcome applications from people with ME. To apply, contact Andy Roper. (from the Carers Centre Update)
Yorkshire and Humberside Low Pay Unit produce leaflets on dismissal and disability discrimination..
Dr Basant Puri and colleagues at Hammersmith Hospital in London have undertaken research with ME sufferers. They used state-of-the-art scanning technology to assess chemical activity in the brain and found higher levels of two key chemicals – choline and creatine – in the brains of people with ME.
They have also suggested that taking certain fish oil supplements with high EPA content may help to alleviate some of the symptoms associated with the condition.
The study is published in the journal Acta Psychiatrica Scandinavica, but a more detailed summary can be viewed at news.bbc.co.uk/1/hi/health/2236698.stm.
Editor's note: Although taking fish oil supplements is unlikely to be harmful, you should ensure that you do not exceed the recommend daily allowance of vitamins A and D, which are often added to these oils. Before taking any supplements you are advised to discuss this with your doctor.
The Medicine Controls Agency has launched a new service to provide up to date information on the safety of herbal remedies. Herbal Safety News is available at www.mca.gov.uk/ourwork/licensingmeds/herbalmeds/herbalsafety.htm. (from Perspectives Medical and Welfare Bulletin)
The Patient Advice and Liaison Service (PALS) for Leeds was launched on 7th May 2002. The service is government funded and is there to provide information and advice for patients in relation to NHS services. The service is designed to listen to the concerns, comments, compliments or complaints made by patients and carers, and to use this information to improve and develop local health care services.
There are four different PALS in Leeds:
More general information about PALS is available from the Department of Health, www.doh.gov.uk/patientadviceandliaisonservices
Anyone interested in finding out the possibilities and procedures for obtaining alternative/complementary therapies on the NHS in the Leeds/Wakefield areas can contact Chris(tine).
Disability Alliance, Radar, Disability Pregnancy & Parenthood International, and the Disabled Parents Network are currently undertaking research into the additional financial costs incurred by disabled parents. They will be considering what costs disabled parents incur that are different from both non-disabled parents and from people with disabilities who are not parents.
If you would like to be involved in this project, please contact Gabrielle Preston at Disability Alliance . (from the Disability Rights Bulletin)
MERGE is the Myalgic Encephalomylitis Research Group for Education and Research. They have produced a number of education/information leaflets, including:
Contact them or to obtain copies of these publications or to make a donation. Chris also has copies of an information leaflet, which will tell you more about MERGE's work.
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 a substitute for professional advice.
by Jane S.
There are no hard and fast rules about driving with M.E: it is up to you to decide how your condition affects you and to decide if you are safe to drive. You have to bear in mind not only your own safety, but that of other road users too.
There are conditions that have to be notified to the DVLA if they have occurred or got worse since you applied for your licence. These include:
Many people do not notify the DVLA, as M.E. often has variable severity of symptoms. However, it is in your best interest to do so if any of these problems affect you seriously as you can be fined up to £1,000. To notify the DVLA you need to contact ? Drivers Medical Unit, DVLA, Swansea, SA99 1TU . If you have any doubts then talk to your GP.
When you are deciding whether you are fit to drive, you need to consider how you feel and use your common sense. If in doubt don’t do it. Think about whether you feel dizzy, what is your concentration like, how tired are you, do you have the strength to remove and apply the handbrake and to turn the car in a tight space, and could you perform an emergency stop if needed? You also need to avoid driving if you are on any medication that causes drowsiness - many anti-depressants do for example. Think about where you are going to drive to; if you are familiar with the route; what are you going to do when you get to your destination; if you can park nearby; and if you have the energy to drive back! I have often been in the situation where I have driven somewhere and then struggled to get back again because my energy has depleted. Also remember that driving in bad weather is more stressful and requires more concentration. I know this all sounds a bit patronising, but you really do need to stop and think, I have often gone out without really thinking and then realised I should not be driving.
If you get higher rate DLA you will be automatically entitled to a blue badge (formerly orange) for parking. You need to contact your local council for an application form. The Leeds contact is Trudi Topley and in Wakefield it is Mrs H Murray .
If you do not get higher rate DLA, but have difficulty walking you may still be able to get a blue badge by asking your GP to make a statement for you, saying what your condition is and how far you can walk. I got mine this way, but have since been awarded higher rate DLA too.
Blue badge holders can park free of charge at parking meters and pay and display areas and also in some areas where parking restrictions are in force, but these need to be checked out first. The badge must be displayed when parked and the time of arrival set on the disc. If the badge is used when the person it is for is not in the car, a fine of £1,000 is payable. Most shops and public buildings have disabled parking areas close to entrances. If you fail to display your blue badge you are liable for parking fines. If the vehicle is purely for the use of the disabled person they may be exempt from paying road tax: enquire with the DVLA.
When insuring your car, you may be asked if you have any illness or disability. Many people answer no as they are worried that their premiums will go up, but the Disabled Persons Act 1995 prohibits this discrimination.
If your journey is essential then consider other forms of transport or ask someone to take you instead.
Leeds and the surrounding area have a reasonable(!) bus service, details from Metro . Some buses are adapted for wheelchair use, but not all so you need to ask Metro or the specific bus operator. If you get higher rate DLA or certain other benefits, you may be able to apply for a disabled persons concessionary bus pass.
In Rothwell we have a bus service every 10 minutes, which stops on the main road about 200 yards away, but I find it a struggle even get to the bus stop and then there is usually a walk when I get off the bus too. I have not used the bus for a long time now.
However, there is an alternative. For people who live in West Yorkshire and are unable to use Public Transport due to a disability, there is a service run by Metro called the AccessBus which offers free of charge, door to door transport. Although it operates in all five districts of West Yorkshire, it doesn't, for some reason, operate between them! So, for example, if you live in Wakefield you can travel around Wakefield but you can't travel to Leeds.
To register for this service contact AccessBus, Wellington House, 40/50 Wellington Street, Leeds LS1 2DE
Has anyone used this service? Was it any good? Please write and let me know.
Taxis are the easiest form of transport to use as they take you from door to door. They can cost less than you might think for short journeys (£2 to my local supermarket, for example), but they can prove expensive for longer journeys. Leeds and Wakefield have many taxi firms but if you do not know any local firms try looking in yellow pages or visit www.yell.co.uk. Many larger supermarkets have telephones direct to the local taxi firm. Some taxis are adapted to take wheelchairs, but this service usually has to be booked in advance.
If you are going on a longer journey the train maybe a good option. At larger stations there are porters to help with luggage and wheelchairs if needed. Train timetables can be obtained from your local station or www.qjump.com. If you get higher rate DLA or SDA you can apply for a disabled persons railcard, which costs £14 a year and gives you 1/3 off fares. If you book tickets more than a week in advance you usually get cheaper fares. Travelling by train is not as restrictive as other forms of transport as you can move around to relieve pain and stiffness. National Express run a coach service throughout the country and serve most towns and cities. Fares are cheaper than the train, but journeys take longer. If you are under 25, a student, or over 50 you can get a discount coach card for about £9 a year. If you book your journey more than a week in advance the fares are cheaper than booking at short notice.
Disclaimer: This article was written by a member of Leeds M.E. Group and the Group is not responsible for the content of this article. If you are unsure, always seek advice from your doctor, legal advisor, other appropriate professional, or government agency.
In the July newsletter we inadvertently gave the wrong contact details for Jane A. The correct email address is janeandrews@onetel.net.uk.
The deadline for submissions for March’s newsletter is January 17th 2003. Please send your contributions to me
by then If you post anything please ensure it has the correct postage attached, I have had a few things that have been underpaid and as well as the shortfall there is an 80p handling charge and the letters are delayed until I send in the payment or go and collect it from the sorting office.
Current postage rates are:
| Up to | 1st class | 2nd class |
| 60g | 27p | 19p |
| 100g | 41p | 33p |
| 150g | 57p | 44p |
| 200g | 72p | 54p |
Further information can be found in your local Post Office or at www.consignia-online.com
We have arranged an easy Yoga Class for our members on Friday 22 November from 3 to 4pm at the Yorkshire Dance Centre (which is just behind the West Yorkshire Playhouse). The class will be taught by Claire McAlpine who ran our last series of Yoga Classes in 2000. Please arrive by 2:45pm so we can start on time - there will then be a chance to rest for 15 minutes after the class finishes. The class is free to Group Members but any donations you care to make will be gratefully received.
The Yorkshire Dance Centre is in St Peter's Buildings, St Peter's Square, there are several car parks nearby and the bus station isn't too far away. The building has lifts to the reception area and all the studios. Mats are provided but please bring a blanket as well.
Numbers will be limited so you must book in advance. Please phone Kath N.. If the class proves popular we may run some more classes next year.
The views expressed in this newsletter 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 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.
