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Welcome to December’s newsletter. I hope that you have all enjoyed the long dry summer. Please remember this is your newsletter and that all contributions, suggestions and feedback are gratefully received. Apologies to all Group members that this newsletter is a little later than usual.
In May the Government announced that £8.5 million pounds of ring-fenced funding would be made available to "pump-prime" the development of new NHS services for M.E. over the next two years. The broad aim is to develop a number of regional co-ordinating centres supporting a network of local community service teams at the Primary Care level.
In the summer the Leeds CFS Service invited the Group to participate in the preparation of a bid for some of this money. The bid is for funds to develop the Leeds service as one of the regional centres and to extend the current service into three local teams for the West Yorkshire area.
A number of members attended Open Forum meetings to gather ideas and feedback on what kind of local services are needed and how the current service can be developed to meet those needs. The suggestions which came forward seemed to match the ideas of the clinical team and were generally well received. Some of the ideas that came forward include providing services at home for those too unwell to travel to Seacroft, more medical support and advice on symptom control, working with social services and advice agencies to provide a "one-stop shop" covering all areas of support needed by M.E. patients and adding services for children and adolescents.
Group Chair David and Wakefield member Richard also attended the meetings of the Steering Group preparing the bid to represent service users interests.
Although participation of local voluntary groups and service users is one of the criteria to be met in the bidding process, it is very encouraging that the Group and other service users have been invited to take part in the bid process.
Hopefully, in the March Newsletter we will be able to announce whether the Leeds CFS Service has been awarded the much needed funds to develop a service which meets the needs of all the M.E. community in Leeds and the surrounding region.
Last month saw the launch of our new telephone Enquiry Line which is a complete reorganisation of the old Helpline service. From now on all telephone enquiries and information requests should be made to the new dedicated Enquiry Line number, 0113 298 2070.
Outside these times you can listen to a message giving the service days and times and have the option to leave a message. This number will be on the back page of every Group newsletter for easy reference. Full details have been included in a separate mailing.
The Group meets at the West Yorkshire Playhouse Café on the 3rd Tuesday of each month from 1pm. The 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 dates for our forthcoming meetings are:
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, orLouise.
We would like to arrange informal social meetings for members in the Wakefield area. To do this we need a suitable venue in Wakefield and at least two members willing to act as meeting contacts.
The ideal venue would be a public area where M.E. friendly refreshments are available. It would also need to be smoke-free and not too noisy with good access to public transport and parking – somewhere like the West Yorkshire Playhouse in fact.
Meeting contacts need to commit to attending meetings – at least one meeting contact needs to be present throughout each meeting. They also need to be happy to meet and welcome new members and be able to introduce them to the Group and talk to them in a friendly and supportive way about M.E.
If you think you may be suitable and are willing to be a meeting contact for Wakefield area meetings, or can suggest a suitable venue, please get in touch with David.
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.
After several years acting as liaison person between the Leeds and District M.E. Group and the Leeds CFS Service, will be stepping down from the post. On behalf of everyone within the Group I would like to say a big thank you to Chris for all her valuable work in helping to develop and maintain good relations between the two organisation for the benefit of our members and M.E. sufferers generally.
As from November I will be taking over this role from Chris and I am asking for your assistance. The Chronic Fatigue clinic is somewhere which we often recommend to our members as so many people have benefited from their services over the years. I would therefore welcome any constructive feedback people have in terms of the experiences of the clinic, particularly in relation to what you have found helpful as well as way in which you would like the see the services developed in the future. All respondents’ personal details will be held in strict confidence. Anne
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:
William Morrison Supermarket Kirkstall. Box collection raising £67.00.
Outwood Ledger Lane Junior and Infants School. Proceeds from end of term concert £166.00.
Anne. Box collection. £31.00.
An individual donation from Councillor Benn.
A contribution from the Chancellor of the Exchequer: thanks to members' Gift Aid declarations £113.00 this year - so far!
Last but not least! Thank you for all of your voluntary subscriptions, new member donations and Action for M.E. introductions.
Apologies for anything inadvertently omitted.
by David
The last year for the Group has been one of significant changes as many of our long standing volunteers have "retired" and new people have been recruited. These changes continue with the launch recently of the revamped telephone enquiry line service.
Being a part of all these changes has led me to think about the significance of change in M.E. I'm sure you will agree that coping with the huge changes that living with M.E. brings about is an important part of learning to deal with the illness. All our relationships are changed, at work, with friends and in the family. The whole pattern of our daily living can be torn apart and reshaped by the limitations M.E. imposes on us.
For me, and I suspect for many, there has been a strong tendency to resist these enforced changes. Only with time have I stated to recognise that change is, of its self, neither good nor bad, it just is. It is our attitude and approach to dealing with change that colours it.
Perhaps developing the right attitude to change is all important. If we dislike change, resist it, ignore it or resent it, we end up losing precious energy to no good purpose. Acknowledging the changes, accepting them and looking for the potential gains could be a better approach.
The people I have met who have coped best and recovered most from M.E. seem to be those who have been able to let go of all that they can no longer be and do from the past and make the most of what they can be and do now. And more than once I've heard it said that they would now not wish to go back to their previous lives.
What's your attitude toward change?
Leeds & District M.E. Group is run entirely by volunteers, most have M.E. themselves. There are always opportunities to join the volunteer team. We are currently looking to recruit:
You must be able to commit to attending social meetings organised in Wakefield to welcome new members and talk to them about the Group. You will also be willing to talk to members about their M.E. experiences in a helpful and supportive way. Other duties will be looking after and bringing a Group sunflower to meetings and taking a list of members attending meetings.
Are you interested in taking responsibility for developing the Groups links with all kind of external organisations and agencies include the media, health and social services and other voluntary sector organisations. To do this you will be supervising other volunteers undertaking specific task in this area such as media publicity, liaison with the Leeds Chronic Fatigue Service etc.
This is a committee level position which would involve become a trustee of the charity and attending monthly Executive Committee meetings.
The main task will be to circulate information about Group meetings and events to the local media in order to raise the profile of the Group. This is a new opportunity so you will need to build a contact list of possible outlets for publicity and then regularly keep in contact to give details of activities as they are planned.
This is a new position which will involve you in all aspects of managing Group volunteers. This will include recruiting new volunteers and supporting the existing team by arranging volunteer meetings and training sessions. Helping the leaders of the service teams with the supervision of their volunteers will also be part of the role.
This is a committee level position which would involve becoming a trustee of the charity and attending monthly Executive Committee meetings.
You will be responsible for managing the Enquiry Line service. This will involve organising the rota of volunteers, arranging cover when a volunteer is unable to work their shift and arranging peer support meetings for the Enquiry Line team. You will also have responsibility for the review and update of guidelines and policies for the Enquiry Line service.
This is a committee level position which would involve becoming a trustee of the charity and attending monthly Executive Committee meetings.
If you would like to know more about any of these opportunities, or anything else about volunteering with the Group, please contact David.
If you feel strongly about health matters and you want to make a difference, the Commission for Patient and Public Involvement In Health (CPPIH) wants to hear from you.
They are now recruiting members for the new Patient and Public Involvement Forums which will play a vital role in making sure patients' and the public's views are heard and acted on by all those involved in making decisions about health. There will be a PPI Forum for every Primary Care Trust, Hospital Trust and special health trust in the area.
If you want to know more contact CPPIH, Nelson House, Quayside Business Park, George Mann Road, Leeds LS10 1DJ www.maketimeforhealth.org
The CPPIH also want to hear from people who are not able to commit to joining a PPI Forum, but would like their views to be heard. The "Our Health" Network will be an important source of information for the PPI Forums, helping them to find out what health issues are of most concern to the public.
If you want to take part write to Make Time for Health, PO Box 11442, Birmingham B2 4WP or register online at www.maketimeforhealth.org
Medical and Research Update
Researchers at Georgetown University Medical Center in the USA have suggested that chronic fatigue could be linked to sinusitis. They found that sinus problems were nine times more common in patients with unexplained chronic fatigue than in patients who did not have the condition.
This study is published in the journal Archives of Internal Medicine. Its findings are consistent with earlier research carried out at Harvard University.
Action for M.E. commented that the research is interesting and worth further investigation. They also commented that in principle one condition could increase the risk of the other, or vice versa (i.e. sinusitis could be more common in M.E. sufferers rather than being a cause of M.E.).
(Source: BBC News Online)
"I have always taken a fairly cautious view about the advisability of giving flu vaccinations to people with ME/CFS. And like some (but not all) of my medical colleagues, I believe that this vaccine is probably best avoided if you are in the very early stages of this illness (especially if it follows an infective onset), or you continue to have a significant flu-like / infective / immunological component (eg recurrent sore throats, enlarged glands, joint pains, temperature control problems). However, if you have any other medical condition (such as diabetes, heart disease, asthma, or kidney problems) which could be seriously affected by a dose flu, then a vaccination would almost certainly be advisable. And this would also apply if you've had a flu vaccine in previous years without any problem even though the viral make-up of the vaccine changes from year to year.
The link between flu vaccination and triggering/ causing a relapse of ME/CFS is based on anecdotal reports, and it's interesting to note that some new research is suggesting that flu vaccine could also be linked to the development of MS and other serious neurological conditions such as Guillain Barre syndrome (GBS). The new research1, carried out by the US Institute of Medicine on behalf of the Centres for Disease Control, concluded that a causal link between flu vaccine and the onset of MS and GBS "cannot be ruled out" but blamed a dearth of good quality scientific evidence for its failure to reach a firm conclusion.
So while the general benefits of mass vaccination certainly against flu outweigh any possible risks, the role of flu vaccine as a possible trigger factor in the development of serious neurological disorders certainly requires some proper epidemiological research."
1'Pulse': Flu vaccine link to MS 'cannot be ruled out' - 21 October 2003
(Source: Sheffield M.E. Group web forum, with permission from Charles Shepherd to reproduce.)
Reiki (pronounced ‘ray-key’) and meaning ‘universal life energy’ is a system of natural healing based on channelling energy through the hands. Probably originating in the Tibet mountains thousands of years ago, Reiki has now come to new centre in Gipton.
The Gipton Reiki Centre is based at Church of the Epiphany, Beech Lane, Leeds. For an appointment or more information please contact Sylvia Overfield.
(Source: Womens Health Matters, Summer 2003)
If anyone would like to have a go at writing the feature article or has a topic they would like information on, please contact us
. Please remember that the articles are only for information purposes and are not giving professional advice.
By Dr Betty Dowsett (with thanks for permission to reproduce from Dr Dowset and the 25% M.E. Group, 4 Douglas Court, Beach Road, Barassie, Troon, Ayrshire KA10 6SQ www.25megroup.org
There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion. [1] And, on follow up over decades (rather than weeks or months), the average person so disabled is found to be functioning (as a student, employee or parent for example) dangerously near their energy limits. The prescription of increasing exercise in such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive.
Although the brain comprises less than 2% of total body weight it requires 20% of the available body energy and a constant supply of glucose and oxygen to sustain its exceptional metabolic work load. Apart from maintaining sufficient chemical and electrical activity to keep millions of nerve networks constantly charged for action, the brain is a power house which initiates and synchronises all out physiological functions. [2] The brain stem and mid brain contain (like the bridge of a ship) all the necessary switches and dials for the passage of information to and from the spinal cord and higher intellectual centres. However, recent research using sophisticated brain scans (PET and SPECT) [3] which measures metabolic activity generated during brain functions, have revealed a paradox. Whereas in healthy controls or people suffering from depression metabolism increases with exercise, in patients with M.E. it is diminished for a considerable period following exercise. Diminished metabolism in the brain stem (which also houses a nerve network, the reticular activating system, charged with keeping us awake and attentive) explains one of the most disabling symptoms of this illness - the unpredictable onset of central nervous systems exhaustion following minor physical or mental activity. Not only are sufferers unfairly assessed for disability benefits by tests (such as the distance walked or the time taken, for example) which take no notice of these prolonged after effects but they are categorised as psychologically disturbed and expected to respond positively to exercise which might only benefit normal people or those suffering from depression.
There are two answers to this question:
1) Most patients with M.E. complain of malaise and some experience severe generalised pain. This is related to the disturbance of metabolism in the co-ordinating centres of brain previously described, whereby the appreciation of pain becomes distorted and the supply of natural pain killers (enkephalins and endorphins) diminished. Muscle, joint and bone pain in M.E. may therefore have central origin.
2) Some 30% of patients have a local abnormality in their muscles, when tested for electrical activity (EMG) for the metabolic effects of exercise (the sub anaerobic threshold exercise test) or by biopsy or serological tests (for evidence of persistent or past enterovirus infection). [4] Whether the individual with M.E. comes into one of these two categories or neither, undue muscular pain or exhaustion following exercise is an indication for rest and some modification of activity. Those who advocate exercise as a cure for M.E. have failed to notice that nature decrees that we must all spend at least 1/3 of our lives resting in bed. This is necessary for running repairs to the brain and to damaged muscles or other tissues. Some reparative hormones (eg Growth Hormone) are only produced during this essential period of rest.
There being, as yet, no specific medical treatment that can be recommended for this illness (a statement recently supported by the Department of Health [5,6] despite a contrary view from the Royal College of Physicians that patients of all ages should be offered the 'psychological benefits' of exercise, drugs and psychotherapy), so the first principle of management still remains CONSERVATION OF ENERGY! Being in short supply for all M.E. sufferers, who mainly function in a range of 40%-70% or normal, energy is more valuable than gold dust and must be conserved as such for two essential purposes.
1. To accomplish the essential chores of life, which are not necessarily enjoyable. These can possibly be delegated, made simpler by mechanical means, postponed or omitted if not vital. Why waste this precious commodity?
2. The greater part of any energy available must be reserved for the things most important to you and which you love to do for, without something to look forward to, however small, life is not worth living. NB. A great many people love their work, DIY and domestic tasks and for them paragraph (1) will seem like gold dust well spent. For others, even the most housebound, joy can come from a variety of different pets, undiscovered or long forgotten talents (art, writing poetry, music or computer skills) or for occasional outings and carefully planned holidays. Happiness is the finest therapy and will provide distraction even from pain and disability. Postpone ambitions or holiday plans if necessary but never totally relinquish them - life is full of surprises!
Every sufferer from M.E. differs slightly from others in terms of symptoms, life style and stage of illness. No doctor can dictate an activity programme without a clear understanding of the cause and limitations of energy supply in any particular individual and the patient is almost always the best judge of this. It is a good idea to keep a very simple diary to guide the process but don't waste energy on it! Use a few coloured pens and mark on the calendar the percentage of energy (eg 5/10) remaining daily at bedtime. Mark, in other columns, adverse factors (such as visits to the dentist or menstrual periods) saving a big star for pleasurable activities and things to look forward to. If you love athletic pursuits and can't be happy without them, try your own modification but stop before pain and exhaustion set in. Remember that muscles remain constantly in tone if you only move between bed and bathroom and that you can always devise and monitor your own programme at home.
Please make a note that there are new phone numbers for M.E. Connect, the M.E. Association’s national information and support service. The phone lines are open 365 days a year, 2-4pm and 7-9pm. They are:MembersNon-members
(Note: the members number is standard national call rates; the non-members number is 10p/minute)
They are also contactable by email .
Action for M.E. now have a wide range of Christmas cards available. To help make sure M.E. is not forgotten this Christmas, ring them for a Christmas Card flyer .
Cards to support M.E. are also available from the M.E. Association. A pack of 12 cards in 3 different designs is £4.99 including p&p. For information and ordering contact Gill www.meassociation.org.uk.
www.meresearch.org.uk/friends/cards.html
The M.E. Association launched a new book written by Dr Dan Rutherford on 11th September. Entitled ME/CFS/PVFS, it is available for £6.00 including postage and packing.
ww.meassociation.org.uk/fcommerc.htm
Leeds City Council is launching a new internet service to provide information for people with hearing vision or mobility problems. Anyone will be able to visit their website and find, for example, if pubs or shops have wheelchair access. When launched, the service will be accessible from www.disabledgo.info.
The British Red Cross have now withdrawn their Emergency Domiciliary Personal Care service in West Yorkshire. However, they offer short term loans of wheelchairs and commodes and a transport/escort service for those who cannot use public or private transport unaided. For more information British Red Cross, Medical Loan Depot, 603A Stanningley Road, Bramley, Leeds LS13 4EL .
Feedback (Leeds City Council newsletter about consultation for disabled people). Send SAE to the Newsletter Editor (I have five copies – first come first served) or contact Leeds City Council equalityteam@leeds.gov.uk.
Parking for Disabled People Map showing dedicated parking areas in Leeds City Centre. Send SAE to the Newsletter Editor (I have five copies – first come first served) or contact Leeds City Council .
Information about easy access buses in Leeds. Contact the Newsletter Editor.
Information about travel buddying scheme. Send SAE to the Newsletter Editor (I have six copies – first come first served) or contact Metro www.wymetro.com .
Christmas is an expensive time, especially if you are ill and not able to work. These websites might save you some valuable cash this Christmas and winter.
uk.pricerunner.com
This is a price comparison site that helps you compare the prices of thousands of goods from hundreds of retailers so you can see where is best value for money. Postage costs are also shown. This site has saved me several hundred pounds over the last year and a lot of time and effort.
www.uswitch.com
If you still buy your energy from British Gas and Yorkshire Electricity then this site could save you at least £50-100 a year by suggesting a better value supplier. Switching is easy because the new supplier handles all the details – you just have to read your meter on changeover day. The site has recently added information about telephone services and options for getting digital TV.
The William Merritt Disabled Living Centre and Mobility Service are having open days where you can meet a member of staff and discuss your needs. The days are:
They are all at St. Mary’s Hospital, Green Hill Road, Armley, Leeds LS12 3QE
A new guide has been produced by the Department of Health which provides accurate and up-to-date information in the rights and services a disabled person or carer can access. These include services from government departments and agencies, the NHS, local government and voluntary organisation
.A Practical Guide for Disabled People or Carers is available from www.doh.gov.uk/disabledguide .
Michaela is in the final year of a BSc in Phytotherapy (Herbal Medicine). Having had M.E. for nearly 7 years as a teenager and now lucky enough to have recovered she has chosen to do her research dissertation on M.E.
Michaela says "I will be comparing the current treatments offered to patients and trying to rate their effectiveness. I will also be investigating what herbal medicine can do to help. As part of my research I have a questionnaire which I hope to circulate to M.E. patients as I don't want all my information to come from doctors and research scientists. I would be really grateful if anyone can help."
If anyone could spare the time and feels well enough to fill in a short questionnaire, please contact Michaela All responses will be confidential.
The deadline for submissions for March’s newsletter is January 15th 2004. Please email your contributions to me
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.
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.
