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Welcome to July's newsletter. I hope that you are all enjoying the summer sunshine!! I have tried to include as much variety and information as possible in this newsletter, but please remember this is your newsletter and that all contributions, suggestions and feedback are gratefully received.
Once again, it's voluntary subscription time. This is when we ask if you could help the Group by making a small contribution (£3.00) towards running costs - but only if you can afford to do so. We do not have a compulsory membership fee as we realise that many people with ME are on very low incomes. If you cannot afford to contribute, it will not affect your membership of the Group in any way.
If you feel able to pay the £3.00 voluntary subscription, please fill out and return the enclosed form, in the envelope provided, to Group Treasurer, Mel Overson. Cheques or postal orders should be made payable to Leeds & District ME Group.
The form also includes a Gift Aid declaration. If you pay Income Tax or Capital Gains Tax, if you sign this declaration the Group can recover the tax you have paid on your subscription - worth 28p for each £1 you give.
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
If you no longer wish to receive the Group Newsletter, please email the Membership Secretary to let us know so we can update our mailing list.
A big thank you to all who have helped the Group in the last few months by making donations, giving grants or raising funds, including:
Plus, thanks for all your voluntary subscriptions, new member donations and Action for M.E. member introductions, which continue to come in throughout the year.
West Yorkshire Playhouse is opposite Leeds Bus Station, it has good parking and disabled parking outside the entrance. A lift is available to the café area, which has a wide range of food and drinks.
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.
The meetings start at 1pm and usually 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.
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 also have evening social meetings on an occasional basis in the Playhouse Café/Bar. The dates for our forthcoming meetings are:
The meetings are between 7:45pm and 9:45pm. Again, we can be identified by the sunflower on our table.
If you would like further information, or would just like to make contact with someone before coming along, then please contact Pete or Louise
We also have a special summer meeting at Victoria Garden Centre Café, Wakefield Road, Featherstone on Wednesday 24th September at 2pm. It has disabled access and is on a bus route between Wakefield and Pontefract bus stations (numbers 150, 148, 145 and 143 buses stop outside). For more details and directions phone Anne.
As you might have noticed it takes a lot of people to run this Group and all the services we offer, which is why you'll find so many different people listed in this newsletter. We are all volunteers and we are all ill, but by sharing out all the jobs we can share out the workload and that helps to keep us all sane!
Many thanks for your help and don't forget if you have any comments about the Group, what we do, what we don't do, or what you'd like us to do, then please contact the new Chair, David Johnson
Note that the helpline number for the Leeds Citizens Advice Bureau has changed. They are open 9:30 to 4:30 Monday to Friday.
Their City Centre office at 31 New York Street is open for personal visits 9:30 to 3:30 on weekdays except Thursday, but you are advised to ring first to make an appointment.
They also run local sessions at 11 different places throughout Leeds. Please telephone the Bureau for details of locations and opening times.
Details can also be found at www.leedscab.org.uk
The Annual General Meeting of the Group took place on the 12th May, which was also International M.E. Awareness Day. A small party of members and committee assembled at the West Yorkshire Playhouse to receive the Annual Report and Accounts for 2002 and elect the Executive Committee for the coming year.
The Annual Report and Accounts were received and unanimously approved by the meeting.
Standing for re-election to the Committee were Tamsin, Helen, David, Anne and Claudia.
Carol, co-opted to the committee during the year, was standing for election for the first time, as were Louise and Mel. Because there were fewer candidates standing than seats on the Committee, no vote was needed, and all members standing for election were unanimously elected by the meeting to serve for the next year.
In the Chair's address to the meeting, David J outlined changes that would be taking place on the Committee, should they be approved by the next Committee Meeting. David said he would be standing down as Treasurer to take up the role of Chair of the Group and Mel would be taking over the role of Treasurer.
Thanks were offered to those who served on the Committee during the year and to all the volunteers who support the Group in different ways. After the close of the meeting, everyone stayed to share refreshments and socialise.
Copies of the Annual Report and Accounts for 2002 are available to all members on request - please contact David J
Viewing the world from the comfort of a favourite chair has become a significant daily activity since M.E. arrived in my life - the same is probably true for you. In a way, I've started to enjoy these times of enforced inactivity as an opportunity to reflect on all kinds of issues, something there was never time for in my previous life as a "human doing" rather than a "human being".
Recently, my musings have been focused around settling into my new chair - that of Chair of the Group. The kinds of questions that have been coming to mind are:
As I thought about these questions, it became clear that much of what the Group does, and how we go about it, has been and continues to be based on the ideas of a very small circle - those involved in running the Group. It is also clear that this small circle may be unrepresentative of the Group membership as a whole.
If the Group is to truly serve the needs of its members, and that is the primary purpose of the Group, we need to know what those needs are. That's where you come in.
Have a think about what you want from YOUR M.E. Support Group. Tell us what you like or dislike about the services and activities the Group provides, or how we could do things better. Tell us about the services or activities that you need or would use. I will be encouraging all our Committee and volunteers to welcome constructive comments, both positive and negative.
Positive comments are important in a voluntary organisation; it is a primary source of encouragement and reward for those who volunteer. Negative comments are also important, if we don't know something is wrong or could be better, we can't fix it.
So here is a vitally important way you can help the Group, all from the comfort of your favourite chair. I look forward to hearing from you!
The Leeds Chronic Fatigue Service is based mainly at Seacroft Hospital, York Road, Leeds, LS14 6UH.
(ask for Dr Stanley's secretary)Maureen is the full-time secretary and receptionist for the out-patient clinic.
The service is headed by Dr Philip Stanley, Consultant in Infectious Diseases and Dr Hiroko Akagi, Consultant Liaison Psychiatrist. Dr Islip (Clinical Assistant) has left the service and has not been replaced
Sue Pemberton is the Clinical Services Manager - she is the overall manager of liaison psychiatry and is also an OT devoting one day per week to seeing patients in order to keep down waiting lists. During the maternity leave of two of the longer-standing OTs (approx June - December 2003) Sue will be increasing her OT sessions in the clinic to 3 days per week. There will also be 2 new OTs - Hilary and Edward - each doing one day per week, and there are plans to recruit an additional full time OT.
There are 4 main OTs in the service:
New to the service are the following:
The other team members are as follows:
There is an in-patient facility (usually short-stay) as well as an out-patient clinic at Seacroft Hospital. There are also two beds available on Ward 40, an in-patient liaison psychiatry ward based at the Leeds General Infirmary (LGI).
The Leeds & District ME Group helpline contacts have written testimonials from patients who have been helped by their in-patient stays on the ward. If you would like a copy, please feel free to contact one of them.
The service is primarily for adults but older adolescents aged 14/15 can sometimes be seen. Referral should always be by a Paediatrician, as the clinic is not officially for youngsters of this age but unfortunately, there is no specialist adolescent or child clinic in the area.
The out-patient facilities are obviously for those who are well enough to travel to attend. More severely affected patients might need to be treated as in-patients. Some severely affected patients may be too ill to come into hospital and indeed the hospital environment may not be physically suitable for them - especially for those with severe MCS (Multiple Chemical Sensitivities); any such concerns should be discussed with the staff at the clinic.
At present the referral rate to the clinic continues to be high. Approximately 50% of referrals come from out-of-area ie not from Leeds. The waiting lists are better than in previous years but still not ideal.
Unfortunately a number of patients are failing to turn up for appointments without giving any prior notice or explanation. This is really not fair to a service which is over-stretched or to the many patients on the waiting lists. Whilst it is appreciated that CFS/ME is a fluctuating illness and it is often difficult to predict how you will feel, last-minute cancellations and unexplained non-attendance should be avoided where possible.
Patients can be referred to the service in one of two ways. They can be referred to Dr Stanley for assessment etc in the normal way; this is especially important where there is some doubt about the diagnosis. Alternatively, patients can be referred directly to the OTs by their GP (this is called 'triage').
All patients referred to the clinic are assessed by the OTs to ascertain which therapy option might be the most appropriate. The therapy is based on 'pacing' (NOT on graded exercise!), principles of Cognitive Behavioural Therapy (CBT), effective illness management, graded activity, goal-setting to build activity tolerance, and anxiety/stress management. Techniques for improving memory, concentration and assertiveness are also taught. There are 3 therapy options:
Each patient is allowed two further sessions each year with an OT to iron out any problems which may have arisen (these may include benefit or work problems). They are also given the direct telephone line to the OTs for brief advice etc.
The OTs can do home visits where requested by a doctor but these are very time-consuming so they probably don't do as many as would be desirable, though they have been out to patients in Keighley and Harrogate when required. They also do a lot of telephone support and advice for existing patients whom they already know. Unfortunately none of the doctors at the clinic routinely offer home (domiciliary) visits to patients.
NB. Between June and December 2003 there will be a restricted/reduced service at the clinic due to two OTs taking maternity leave. It is likely that the service will be unable to honour the two annual 'top-up sessions' it routinely offers to current and previous patients during this time. There may also be longer waiting lists.
Should anyone want further information or wish to discuss the clinic in more detail please ring Leeds & District ME group helpline contacts Chris or Simon
M.E. Awareness week (May 12-18) was a busy time with a number of important events and announcements taking place.
On May 12th a demonstration and lobby of parliament took place organised by Castleford Aid for M.E. with the support of GMB Union, the 25% Group, Tymes Trust and local groups. Petitions were handed in at 10 Downing Street and MPs were lobbied at Westminster.
On the same day Action for M.E. launched the 1% Campaign by publishing an updated Cost to the Nation report. This shows that M.E. is costing the country £3.5 billion every year in health service costs, benefits and lost taxes - around £15,000 for each of the estimated 240,000 people with M.E. The campaign, which will run for the next few months, aims to persuade the Government to put 1% of this £3.5 billion - £35 million - into funding M.E. research.
All Action for M.E. members have been sent postcards to return to show their support for the campaign, and petition forms are also in circulation. Campaign materials are available from David J for anyone who wants them.
Following the launch of the 1% Campaign, the Government announced that £8.5 million to "pump prime" new services specifically designed for people with M.E. This will include establishing centres of expertise across the country and multidisciplinary community teams to develop services and support GPs. However, this money will not be available until April 2004 and is for 2004 to 2006. It is a step in the right direction but only a very small one.
Action for M.E. has also been awarded a grant of £177,000 over 3 years by the Department of Health in England to help develop NHS services for people with M.E.
Medical Research Council funded trials to evaluate the effectiveness of rehabilitation treatments for CFS/ME were also announced, following the publication of the MRC Research Strategy earlier in May.
The PACE trial (Pacing, Activity and Cognitive behaviour therapy: a randomised Evaluation) is a four year six centre study to compare the effectiveness of pacing, graded exercise and cognitive behaviour therapy - the three approaches to treatment highlighted by the CMO's Report. It will be the first time that pacing has been evaluated in a formal trial and will be one of the largest studies of GET and CBT.
Action for M.E. is involved in the design and monitoring of the trial and has already made an important contribution by ensuring that the study will also look at those who are made worse by the therapies, and proper account is taken of those who drop out.
The second trial - Fatigue Intervention by Nurses Evaluation (FINE) is a larger follow-up to an earlier study of treatment delivered in the home by specially trained community nurses.
More information on these announcements is available online at www.afme.org.uk/news and www.mrc.ac.uk
If anyone 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 giving professional advice.
For sufferers of ME even simple things like getting to the local (or not so local these days) branch of your bank can be difficult. It's now possible to do your banking in lots of different ways including by post, by telephone, and online. In addition, many traditional banking tasks can be automated, for example by setting up direct debits.
This article is meant to give you an introduction to banking on the Internet and how it may be able to save you (whether an ME sufferer of not) time and energy. It also aims to dispel some of the fiction about hackers that some sections of the media like to report with glee at regular intervals. However, it is not meant to give you information about specific bank accounts, recommend a particular bank, or tell you where the best deals are. For this information I recommend the personal finance pages of the Sunday papers, or the numerous magazines (and internet sites) available on the topic. I will however refer to specific examples from my own experience.
First, to dispel those myths: There is no reason why banking online should present any more of a threat to your hard earned money than banking by other means. Almost all banks offer protection against online fraud to their customers, in much the same way as if your bank cards had been stolen. In fact the protection is higher since you won't be liable for any of the losses. Hundreds (thousands?) of people are mugged or burgled every day, and these don't make the headlines in the same way as the occasional Internet fraud - it just doesn't sell newspapers. However, that doesn't mean you should be lax, and just like you wouldn't give your ATM pin number to a 'bank official' that rings you up out of the blue, the same should apply to your online banking details. It is also worth investing in some antivirus software and installing updates for your operating system (automatic in the case of Windows XP).
There are essentially two approaches to starting doing banking on the Internet. The first is to start using the online facility offered by your traditional high street (or telephone) bank. The second is to sign up with one the Internet only banks, which will usually have a telephone banking 'back-up' but usually won't have any traditional branches.
If you're new to online banking, and the Internet in general, I would suggest you explore your existing bank's online facilities first. This may involve going into a branch and completing a form, or visiting their website and registering there. The facilities available to you once you are up and running will vary quite significantly, from just being able to check your balance and view statements, to managing direct debits, standing orders, and transferring money to, and opening, other accounts.
The other route is to visit the website of an Internet only, or mainly internet, bank. Examples include Egg, Cahoot, and Smile. There are also banks such as First Direct that have migrated from mainly telephone to Internet banking. These banks will usually operate all their services via the Internet, including account opening and closing (although they will usually send you a form you need to sign and request identification), transferring money, and paying bills. Many have also started to offer other services such as credit cards, home/car insurance, and investment banking (unit trusts etc).
I've touched on some of the features available when banking on the Internet above. These can be of particular benefit to ME sufferers that have difficulty getting to a traditional bank. In some cases they can even save a trip to the post-box because, for example, some internet banks allow credit card payments to be made by credit transfer from your current account (whichever bank it is with).
Of course the key advantage of many of these accounts, which applies to non-sufferers as well, is that they tend to offer better rates and lower charges.
There is no such thing as a free lunch, and Internet only banks do have a key disadvantage that you have to trade off against these advantages. Because there are no branches, payments into the account can usually only be made by post or by credit transfer. Some offer freepost envelopes for sending in cheques, but it can be rather difficult to pay in cash. Withdrawals are usually handled either by credit transfer to another account or by using cash machines.
However, some of the Internet banks are owned by big high street banks and will allow deposits to be made at their branches (but not over-the-counter withdrawals, or enquiries). An example is First Direct, owned by HSBC.
We have a 'traditional' current account with the Halifax, and are registered with their online banking website which enables us to check our balance and statements, modify and cancel direct debits and standing orders, as well as open a 'WebSaver' savings account, request an overdraft etc... These facilities are all offered free.
Our credit card is Internet only from Egg. We find the main advantage of this is that we can set up a direct debit from our Halifax current account to pay off our bill in full (or any other amount we want) every month. This means there's no risk of forgetting to post a cheque or call in at the bank everything is automated. We also get no bill landing on the doorstep - everything is done online. This may seem a bit worrying to the more cautious of you - but we've had it 3 years and experienced no problems. The second advantage is that you get 0.5% cashback on all purchases. The cashback is credited to your bill annually on the anniversary of account opening, which in our case means about £50 just in time for the Christmas shopping!
We also have a savings account and a stocks and shares ISA with Egg that are hassle free and offer good rates.
I've painted a very positive image of Internet banking in this article, and that largely reflects my experience with it. That's not to say there aren't occasional problem, for example servers going down and not being able to get access for a few hours. However, these are rare, particularly with internet only banks which have better contingency plans in place reflecting the critical importance of the website to their business.
My advice is to start slowly, particularly if you are new to the Internet in general, by approaching your existing bank and enquiring about online banking. If you find the experience useful then a savings account or credit card with an Internet only provider would probably be the next step, since these tend to offer a significant advantage in their rates compared to the high street.
Lastly a word of caution: The same rules apply on the Internet as on the high street as far as common sense goes. You wouldn't put all your life-savings in an Acme Bank International that was operating from your local takeaway, and the same goes for the Internet. Stick to UK banks and those owned by household names (for example, Egg is owned by Prudential); otherwise caveat emptor.
The deadline for submissions for November's newsletter is September 17th 2003. Please email your contributions
If anyone has any ideas for the newsletter please do contact me to discuss these or send me a copy of what you would like to include.
I was wondering if people would like to hear about other people's experiences with ME? We could print one person's story in each newsletter, do let me know what you think of this idea.
The views expressed in this newsletter are for information only and should not be used in place of advice from appropriately qualified and experience 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.
