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Welcome to the March 2004 newsletter. Christmas is now a distant memory, but I hope that you all enjoyed the celebrations and did not suffer too much afterwards.
As ever I am appealing for newsletter contributions. It is usually the same few people who make contributions, it would be good to see more variety. If you have any ideas at all please do let me know. Don't wait for the deadline for the next newsletter, get your thinking caps on now and think about what sort of things you would like to read in the newsletter. Remember it is your newsletter and all your contributions are welcome.
Nearly 40 people came to our two Christmas parties in December. Many thanks to Kim, Elizabeth and their families for hosting the events. We hope you all enjoyed the chance to meet and chat with old and many new friends.
I believe one of the more important functions of the Group is to help members make contact with one another and build new friendships.
This is done through the social meetings and events which bring people together and through the Friendship List for those unable to get to meetings. The latest addition to these services is the Email Friends list which is being launched in this newsletter.
Dealing with the impact on friendships and relationships is, for most of us, a difficult aspect of learning to live with M.E. It is only through experience of some life-changing event that we learn the true value and cost of our friends and family.
It may be painful to discover how some of our relationships are based mostly on shared doing of some activity, all too frequently one that is no longer possible for us. We also have to learn how to deal with those people who, for their own reasons, are unable or unwilling to understand the limitations and difficulties' living with chronic illness imposes.
Perhaps it would be worthwhile to assess the impact of our friendships on our health and energy levels? Every relationship has its own dynamic of giving and receiving, some are well balanced and in others one will be the principle giver. This balance may also change with time and circumstances. Many of us will be fortunate to have those one or two special people around us who are ready to give freely of their time, love and support. This should help us recognise that we still have much to offer despite our limitations.
Being aware of the energy dynamics of our relationships perhaps allows us to work at finding a better balance where needed. Sometimes, though, where that better understanding can't be reached, the difficult choice of limiting contact may be necessary to protect our health.
Are you making the most of the opportunities the Group offers to build new friendships? Why not come along to a meeting, or join the Friendship List, write a letter, or send an email.
David J. - Chair, Leeds ME Group
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 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. The meetings are very informal and give you the opportunity to meet fellow Group members.
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 more information, or would just like to make contact with someone before coming along, then please call the Enquiry Line.
At the request of members living in Wakefield, the Group is making progress towards getting meetings started again in the Wakefield area. Following an appeal in last newsletter some suggestions have been received in terms of possible venues.
As a result, we are holding an initial get together on Thursday 25th March between 2-4pm at The Friends Meeting House, Thornhill Street (off George Street), Wakefield.
If you are interested in seeing the Group hold regular meetings in Wakefield again, please come along with your views suggestions and any offers of support.
The Group will meet at 7.00pm on Monday 10th May in the Priestley Room at the West Yorkshire Playhouse in Leeds for a Members' Open Forum and Annual General Meeting. The Priestley Room is down the stairs from the box office and reception area, near the toilets. All members of the Leeds & District M.E. Group are invited to attend this important meeting.
The Annual General Meeting (AGM) is the only members meeting that the Group is required to hold each year. It usually lasts for 30 to 40 minutes, the main business being to receive and approve the Accounts and Annual Report for the previous year and to elect the a new Executive Committee to run the Group until the next AGM.
Any member of the Group may stand for election to the Executive Committee provided they are able and willing to act as a Trustee of the Charity, and can attend Committee Meetings, usually about 10 a year held during the day. Nomination papers, together with the Agenda for the meeting, are enclosed in this mailing.
The AGM is also an opportunity for you, the members, to raise any concerns and criticisms (or even praise!) about how the Group is run. Please let Anne T. Group Secretary have details of anything you wish raised at the meeting, or come along and speak in person - there is always an opportunity to ask questions at the end of the business meeting.
After the formal business meeting, this year we thought it would be a good idea to have an informal Open Forum for everyone to have their say about the Group. The Committee needs to know that we are offering the kind of services that members need, and that they are easy to use, and would welcome any ideas for improvements.
If you ever have a good grumble, either at Group meetings, or quietly to yourself, that "THEY" don't do this, or do that badly - this is the chance to have your say where it will be heard. Also, please bring all your ideas for different events, fund raising, improvements to services - anything you want to suggest will be welcomed.
Please do come along and tells us what you think about the Group, and what you want from it. If you are unable to come, please email us with your feedback and suggestions before the meeting. If you don't tell us about it, we can't do something about it!
In the autumn we hope to hold an evening where we can exchange ideas about managing your illness, therapies you might like to try and any M.E. related issues. If you are interested in such an evening we would like to hear from you so we can get a rough idea of numbers and plan a suitable venue.
The Group has a small mountain of collecting boxes. It would help Group finances (and space in the Treasurers garage!) to find some more locations for boxes - can you help?
Please could you ask at the local shops, clubs, pubs, etc that you regularly use if they would be willing to have a box - and would you be willing to look after the box? Perhaps a relative or friend works somewhere that a box could be placed. Businesses that give lots of small change in cash are the ideal kind of site.
Looking after a box would mean going from time to time to change the box for an empty one and getting the full box back to Treasurer Mel Overson for emptying.
This is a simple way you can help the Group which doesn't need much time or energy. If you have a location for a box, please contact Mel Overson.
Thank you to everyone who has contributed to Group finances by making donations, subscriptions, giving grants or raising funds.
Box Collections: Jacksons and Pollards Newsagents
Individual Donations from: Mrs G, Dianah O and Mr. & Mrs. S
A special thank you to the children, parents and staff of Outwood Ledger Lane Junior & Infant School for the donation of the proceeds of their Christmas productions - £359.72.
We are deeply grateful to the Trustees of the Joseph and Mary Hiley Trust for a generous grant of £100.00 towards our funds.
We are still getting some of your own back from the Chancellor! Gift Aid contributed over £130.00 to the Group in 2003. If you are a taxpayer, please continue to let us know when you make a donation or subscription. Gift Aid increases your contribution by 28% at no extra cost to you.
Thanks to everyone who bought from amazon.co.uk through the link on the Group website this Christmas. A commission payment of £28.72 has just been received.
A reminder that if you are buying books, CDs, DVDs, and many kinds of electronic goods online, if you go to the amazon.co.uk website through the link on the Group's home page at www.ldmeg.org.uk, the Group gets a commission on every purchase. This is a simple way to help Group funds which doesn't cost you anything.
Finally, whilst the Group's financial reserves are moderately adequate at present, they have been heavily drawn upon during 2003. Most Trusts have less money to give due to the fall in investments. Consequently, we have had to dig into our reserves - particularly to set up the new telephone enquiry line. We need to increase our income in 2004!
Do you know a friendly shopkeeper who might display one of our collection boxes? Could you persuade a local school to support us with a concert or sports day? Does your Church have charity support functions such as coffee mornings, jumble sales etc? Please contact any committee member if you have any suggestions along these lines.
Since the launch of the new Enquiry Line number in November there have been a couple of queries about confusion with the recorded messages and how the service works.
Calls are handled by a remote telephone management service which diverts calls to the homes of our volunteer team. All calls are first answered with a short recorded message welcoming callers to the service. "Do not be discouraged if you hear a recorded message. Please wait until the message is complete and either your call will be answered, or you can leave your details and someone will ring you back, usually within, 48 hours."
If you are calling out of hours, a longer recorded message will give the service times starting with the next day and time that someone will be answering calls. There is the option to leave a message if you wish.
If you are calling when someone is taking calls, as it takes a little time to set up the call diversion, a recorded message gives an introduction to the service and this is followed by a ring tone until the call is answered. If the volunteer's home line is busy and the call cannot be put through, again you will have the option to leave a message.
The Enquiry Line is NOT on a premium rate number, and the Group does not receive any money from calls. All calls should be changed at the normal rate for 0113 numbers - a local call for most members.
Callers in the Leeds exchange area, with 0113 numbers, do not need to dial the area code - just treat it as any other local number.
If you have any more questions about the service, please call the Enquiry Line, or get in touch with David J.
We are pleased to announce a new way for Group members to keep in touch with the launch of our internet mailing list.
When you subscribe to the list and your membership is approved, your name and e-mail address is added to the list. You will receive a standard letter of welcome (via e-mail) telling you about the list. From that time on, you will receive all mail (postings) sent to the list by other members. You may follow the discussions or join in on them. If you respond, you can send your response to the list (in which case, all members of the list will receive it), or to an individual on the list. You can signoff (unsubscribe) from a list at any time. The list will be closed - for Group members only - and not moderated - no one will be checking and approving postings.
If you would like to know more about the list, please email David J.
You may have noticed that the Group website has now been moved to a brand new address at www.ldmeg.org.uk - much shorter and hopefully easier to remember than the original address. An overhaul of the content of the website is also in progress. Thanks to Nick Iredale of the Gran Canaria branch of the Group for all his hard work looking after the website.
New "job" based email addresses are also being introduced for our volunteer team and committee. This means, for example, that you will always be able to contact the Group secretary by email whoever is the Chair. We hope that this will make it easier for you to contact the right people by email.
Hi, I'm Jonathan and I am moderately affected by ME. I wanted to write this article to try and encourage more members to attend the afternoon and evening social meetings at the Playhouse. I know by my own experience that, even if one has reliable friends and family to speak to, it helps enormously to converse with fellow sufferers about ME.
I have been a member of Leeds & District ME Group since 1996, when I was first diagnosed with ME, but I only decided to attempt attending meetings in February 2003. I have since enjoyed going to many.
Maybe someone reading this is in a similar position to the one I used to be in. I would read about the group and the meetings in the newsletters but fought shy of actually attending as I was unsure of the setup of the meetings or the possible benefits of going along. I always suspected it would be a good idea to attend but never attempted it even on my so called 'good days'.
I now know I didn't need to have any doubts about attending. The day before my first attendance I phoned one of the designated people to let them know I would be coming (health permitting) so they could look out for me. I thoroughly enjoyed my first visit to a meeting and was made to feel welcome by the friendly 'meet and greet' volunteers.
It has helped me a great deal to be able to talk to other people with ME face-to-face at the meetings. I can't claim that coming along will actually improve one's health, but the empathy between sufferers certainly does help. Of course, its not compulsory to only talk about ME at the meetings!
The meetings also provide a chance to borrow items from the book and tape libraries, and also to provide feedback about the services the Group offers to its members.
In summary, I have no hesitation in recommending the meetings to members who have not been before. I now feel a lot less isolated in my illness. I hope to see you there soon!
You may have seen coverage in the national and local press about the announcement of the successful bids in the first round of funding from the £8.5 million of Government money for developing new local services for ME/CFS.
The bid from the Leeds Chronic Fatigue Service at Seacroft hospital was successful. Seacroft will become one of 12 national Clinical Network Co-ordinating Centres and will be the base for 3 Local Multi-disciplinary Teams covering between them all 15 West Yorkshire PCT areas. At this stage it is unclear if the LCFSS bid will be funded in full.
The bid includes plans to expand the services offered covering areas like home visiting and care for the severely affected, services for children, medical advice on symptom management, improved provision for follow-up and access to welfare rights advice within the service.
The Group have been invited to participate in the Local Implementation Group which will oversee the planning and development of the service over the next two years. Throughout the process we will make every effort to ensure that the needs of service users are heard and we will keep you updated on developments through the newsletter.
If you have served in the military prior to getting M.E., or know of someone who has, please ask if they would consider contacting Theresa Coe, Editor, InterAction regarding a future article in the magazine. Those who have already been in touch following the appeal in the magazine will be sent some questions about their experiences which will form the basis of the feature (you can remain anon if you prefer).
The information in this section is sent in by members and should not be interpreted as a recommendation by Leeds & District M.E. Group. Please email any information you would like to have included or feedback if you use any of these services
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
The Jade Centre of Acupuncture & Chinese medicine, 148 Harrogate Road, Chapel Allerton, LS7 4NZ . Initial consultation and treatment session (1½ hour) costs £50. (Information sent in by Andy S.)
144 Harrogate Road, Chapel Allerton, LS7 4NZ Has practitioners in a wide range of complementary therapies. (Information sent in by Andy S.)
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 Shaw Please remember that the articles are only for information purposes and are not giving professional advice.
Courtesy of Sheffield ME Group
Lots of people with ME seem to suffer from sinusitis at some time or other, and this is not surprising because the condition is connected with weakened immunity and with allergies. Sinusitis can be a short illness which strikes during a cold, or it can be chronic, occurring with a long term infection or an allergy such as hay fever. As for the ME connection, there is some research on "Differences in Baseline Nasal Secretions Between Chronic Fatigue Syndrome and Control Subjects" (see www.immunesupport.com) but this is controversial and outside our scope here.
A 'sinus' means any 'gap' in the human body, but the sinuses we are concerned with are hollow air spaces in the skull or bones of the head surrounding the nose. Each sinus has an opening into the nose for the passage of air and mucus, and each is joined to the nasal passages by a continuous mucous membrane lining.
Anything that causes a swelling in the nose, such as an infection or allergic reaction, can also affect the sinuses. Blockages of air and trapped mucous secretions cause pressure on the sinus wall and the intense pain of a sinus attack.
The location of the pain and tenderness depends on which sinus is affected and this can include the forehead, the upper jaw, the cheeks and teeth, near the tear ducts of the eyes, at the sides of the nose and even the ears, the nose and the top of the head. But most people with sinusitis have pain and tenderness in several places and it is not easy to tell which sinus is affected.
Sinus congestion feels like a 'face headache'. Headache when you wake up in the morning is typical of a sinus problem, together with fever, weakness, tiredness, a cough, nasal congestion and usually a thick nasal discharge. There may also be a sore throat caused by drainage of mucus from the sinuses down the back of the throat ("post nasal drip") but with sinusitis there is not always necessarily a runny nose.
Sinusitis can be acute, chronic or recurrent, but the causes and treatment are similar for all three. Most cases start with a common cold, caused by a virus. Congestion causes the sinus openings to become too narrow to drain away the mucus, which then stays in the sinus providing a prime site for bacteria to multiply. Common bacteria which we all harbour in the nose and throat, such as Streptococcus, then invade the sinus and cause the problems.
There is also a fungal type of sinusitis in people whose immune systems cannot cope with some of the fungi that are abundant in the environment.
Sinusitis can also be caused by allergic rhinitis or hay fever (in a similar mechanism to the above) and also by sensitivities to alcohol, perfumes, tobacco smoke and other environmental conditions. In chronic sinusitis, infection can spread between the sinuses and the lungs, causing persistent inflammation which should certainly be taken to the GP.
Sinusitis is different from simple nasal congestion in that it lasts much longer and is accompanied by other symptoms such as weakness, feverishness and a cough that may be worse at night. It is diagnosed by physical examination, together with X-rays and if necessary an MRI or CT scan.
Your GP might recommend:
Decongestants are in the form of nasal drops or sprays. Some are available over the counter and some are steroid based and available only on prescription, but all should be used for a few days only. They could lead to even more congestion if over-used.
The GP might prescribe antibiotics if the infection is bacterial.
When medication fails in a case of chronic sinusitis, surgery may be considered, and some research studies do suggest that the vast majority of people who undergo surgery have fewer symptoms and better quality of life afterwards. Adults who have had allergic and infectious conditions over the years sometimes develop nasal polyps that interfere with proper drainage, and removal of these often provides great relief from sinus symptoms. The most common surgery done today is functional endoscopic sinus surgery, where the natural openings from the sinuses are enlarged to allow drainage. This type of surgery is less invasive than other types, and serious complications are rare.
There are many tried and tested home remedies that can help with this problem.
Inhaling steam from a vaporiser or hot cup of water can soothe inflamed sinus cavities. Or get a basin of boiling water and lean over it with a towel over the head, inhaling deeply for ten minutes.
Some find that steam alone works well, whilst others have recommended a warm inhalation of eucalyptus oil or a few drops of Olbas oil in hot water. Menthol crystals are available from chemists, and these are also recommended - dissolve some crystals CAREFULLY (as they are powerful) in boiling water, and use as an inhalant.
Gentle heat applied over the area is soothing. Wringing out a face cloth in hot water and applying over the face is basic hydrotherapy. You can also wrap a hot water bottle in a cloth and place your face against it.
Weleda have a remedy called 'catarrh cream' which helps open up the nasal passages when a little is smeared in the nostrils. One member finds this useful at night when congestion worsens.
Overall, drinking plenty of water is recommended. As with any inflammatory condition it is vital to keep the body well hydrated. Ginger tea made with fresh ginger is also recommended.
Acupressure massage, which you can do yourself, is very helpful to relieve sinusitis. This consists of pressing quite hard with fingers and thumbs on certain points of the face, head and hands. The most useful points can be found on each side of the nostrils (LI20 in the diagram) - pressing hard here with the index fingers for about 30 seconds, and then taking a deep breath, can surprisingly bring relief.
Alternatively, place the thumb and index finger of your left hand on the indentation of the inner eyes, where the bridge of the nose meets the eyebrows. Place your right hand behind the neck, grasping the muscles on either side of the spine with the fingers and the heel of your hand. Put pressure on all four points simultaneously for one minute whilst breathing deeply. Self-help books on acupressure massage, and information can be found on websites, such as www.wholehealthmd.com/hc/sinusitis/acupressure/.
For severe and painful bouts, there is a home remedy from Ayurvedic (traditional Indian) medicine. Use a garlic press to squeeze fresh garlic juice then put some juice in a dropper. Put a few drops into your nostrils and keep your head back so that the juice stays inside your nose for about 5 minutes. Then sit up and let it drain out into a tissue. Do this no more than once a day for congestion, and no more than 3 times a day (!) for a severe attack.
There are things we can do to reduce the number of attacks and possibly prevent acute sinusitis from becoming chronic.
It helps to keep your room temperature even and not to submit yourself to sudden temperature changes. If you are going out into the cold, wrap up well, of course, including a big scarf, and don't take big gulps of air straight away.
Indoors, if your central heating causes a dry atmosphere, a humidifier might help. These cost upwards of £50 but a cheap and cheerful version of this is the water holding reservoirs you can get which attach to radiators (but please note that moist conditions are not helpful for people with allergies).
In the case of allergens, it helps of course if you can arrange to keep these down to a minimum! Allergy is a huge area of interest and concern and information is available elsewhere on this. Your GP should be told about allergies and may prescribe anti-histamines, which will in turn reduce the unpleasantness of allergic sinusitis. An ioniser is a device that is said to help allergies by putting more negative ions into the atmosphere and reducing the effect of airborne allergens. These are available from department stores from about £20.
To keep the nasal passages clear (and this of course is only for when you are able) a saline douche is recommended. A proprietary product is available which is in effect a commercialisation of the standard yoga practice of Neti; when salt water is inhaled through one nostril at a time and expelled through the other - this is certainly helpful after you have been in contact with an allergen, and is recommended for allergy-related sinusitis.
The product which you can buy is called EMCUR Nasal Douche and is available by mail order or at www.emcur.co.uk. The douche costs £14.65 and their 'special' salt (bicarb, potassium, sodium and trace elements) costs £9.95. They also do a nasal spray which costs £3.50 and a combined kit of 1 douche and 1 carton of salt for £19.95. There is a postage charge of £3.50 for all products. (prices correct at time of writing)
For ordinary nasal rinsing and gargling, just make a solution of about one small teaspoon of salt to a mug of water - it needs to be brought to about the same saltiness as teardrops or seawater and then is quite comfortable to use (it's very uncomfortable when you get it wrong!). An old fashioned cold remedy is in fact clearing the nose with sea water, which would make good sense if the sea were clean, but nowadays is not recommended! But sea salt is better than table salt for home remedies because it contains some helpful trace minerals.
It is of course important to be well nourished in order to support the immune system and the mucous membranes. Make sure you are getting enough Vitamin C and Vitamin B6 which help prevent inflammation and excessive histamine levels, and also zinc, which strengthens overall immunity. For this we should eat lots of antioxidant rich fresh fruit and vegetables plus seeds, which are rich in selenium and zinc (such as sunflower, sesame and pumpkin seeds - soak them first for a few hours, and then rinse them, if you find them difficult to digest). Essential fatty acids (as well as being vital in the diet for other reasons) help reduce allergic inflammation and these come from cold pressed vegetable oils, especially from the nuts and seeds (do not cook them, but use in dressings).
Some sufferers may be helped by eliminating wheat from the diet and it could certainly help to cut out milk and dairy products as these encourage mucus production.
You may like to consider these two different views of the sinuses. Dr Myhill says of them -
"Whoever designed the human body needs a black mark for putting in sinuses! I don't know of any useful physiological function they perform".
Whereas Robert Hart (ecologist and author of The Forest Garden) says:
"The human being is intended by nature to be a singer. The head has three pairs of sinuses, the only known function of which is to act as resonators corresponding to the three 'registers' of the singing voice. If they are not used for that purpose, they tend to get clogged with mucus, causing headaches and catarrhal troubles. Everyone should take singing lessons, as singing is one of the most health-promoting of all activities".
So, when you are practising your singing, take advice from the professionals and sing 'from behind the eyes' and this (together with the steam from the bath) should clear your mind and your sinuses!
Internet shopping for sinus help devices - www.ishop.co.uk/ishop/1013/shopscr15.html Many thanks to Sheffield ME Group for allowing us to publish this article www.sheffieldmegroup.co.uk
Congratulations to Carol, our book librarian, and Rick who got married just before Christmas. All their friends in the Group wish them every happiness.
On Tuesday June 22nd from 2pm we are returning to the Victoria Garden Centre, Wakefield Road Featherstone. This is purely a social meeting in the cafe area (look for the sunflower). Please come and join us for a drink and a chat. The centre has disabled access and is on a bus route between Wakefield and Pontefract bus stations (nos. 150, 148,, 145 and 143 buses stop outside) For more details and directions contact Anne T.
The Leeds CFS Service is planning to hold regular meetings every two months where current and former service users can give feedback about their experiences and hear news of developments. The date for the first meeting is to be finalised, but will be in May. For details please contact LCFSS
The West Yorkshire Playhouse has recently introduced a new ticket discount scheme called Standby. Standby tickets are available from 9 am on the day of performance, and can be purchased by any of the following: senior citizens, children, full-time students, anyone receiving unemployment or disability benefits, LeedsCard holders, members of Equity, Bectu, Yorkshire Playwrights and MCA members.
Prices are as follows:
Monday Evening through to Thursday Matinee performances - £4
Thursday Evening through to Saturday Matinee performances - £7.50
To book tickets contact the West Yorkshire Playhouse booking office on .
The scheme is NOT CONNECTED in any way to the discounts available via our Theatre Group. You can take advantage of it whether or not you belong to the Theatre Group, and would need to book any tickets separately from the Group.
The deadline for submissions for July's newsletter is May 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. You do not have to write the articles or items yourself if you do not feel confident to do this, just contact me with the idea and I will see what I can do!
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.
