Editor’s WelcomeWelcome to the July 2004 newsletter. Hope you are all enjoying the sunshine. We have a few new contributors in the newsletter this time, but there’s always room for more! If you have any ideas at all please do let me know. |
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If you are able, please contribute towards the running costs of your group. Every pound given is a pound less that our volunteers need to raise through fundraising and applying for grants.
A very big thank you indeed, to all those who helped to run a stall in May at the Open Day of the Community Network. This has certainly helped to maintain our close links with the Playhouse, and to benefit the ME Group to the tune of £45.33. Thanks also to those who kindly donated books, tapes and other items to sell on the stall, and to Rob and Jane for their donation from their card sales.
[Editors note: and a special thanks to David B. who put in all the time and effort to organise the ME stand.]
The group meets in the West Yorkshire playhouse café area (sunflower on table) on the 3rd Tuesday of each month from 1pm. The playhouse is opposite the Leeds bus station, it has good parking with disabled spaces outside the entrance. A lift is available to the café/bar area which offers a wide range healthy or not ) of food and drink.
Future dates are:
Meetings are very informal and usually last for a couple of hours. They give you the opportunity to meet fellow Group members and browse through and borrow books/tapes. You will always receive a warm welcome so please give us a try and come for as long or short a time as you wish.
If you would like more information, or would just like to make contact with someone before coming along, then please call the Enquiry Line.
Thank you to Jonathan for your article in the last newsletter about how valuable the monthly meetings have been for you.
After July we will be stopping the evening meetings for a while; many thanks to Pete and Louise our evening greeters.
Following the appeal in the last newsletter to gauge interest in a self-help evening we had only 2 calls. If anyone else is interested in an evening for exchanging ideas on managing your illness, therapies you might like to try and other M.E. related issues please contact Helen
We are pleased to announce that following the success of an introductory meeting we are now holding regular monthly gatherings in Wakefield centre. These will take place on the 2nd Thursday of each month at the Friends Meeting House, Thornhill St. (off George St.) near the Ridings shopping centre. The meeting house is open for us between 2 and 4pm; please come for as long as you like - for a chat with fellow members, a cup of tea and biscuit and to browse and borrow a book and tape.
Future dates are:
There is disabled access and parking for several cars next to the meeting house. If you would like more information please call the Enquiry Line.
After the great successes of last years Christmas parties we are again looking for a venue/home. You choose the date (any in December) and time (afternoon or evening) and we will bring the food and drink.
Numbers usually between 10 and 20.
Please ring Helen
Don't leave it to someone else or it won't happen!
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.
Difficulties faced by people with M.E. when applying for benefits were the topic of an adjournment debate in the House of Commons during M.E. Awareness Week. The debate was requested by Mr Anthony Wright MP (Great Yarmouth), also chair of the All Party Parliamentary Group on M.E. in Westminster.
Anthony Wright MP presented in detail the problems experienced by people with M.E. when applying and being assessed for DLA benefits. He even describes the way people with M.E. are treated as 'institutional prejudice' in his introduction:
"The condition has cost the taxpayer about £4 billion to date, with only small inroads being made into treatment and understanding - access to benefits continues to present problems for sufferers. Lack of knowledge and understanding of the condition among professionals, widespread disbelief and institutional prejudice, lack of effective evaluation and plain stigmatisation mean that there is little or no consideration of the desperate problems experienced by sufferers. The Disability Living Allowance and the new permitted work rules need to be revisited if we are fundamentally to change institutional prejudice towards this very real illness."
Two case studies were used to demonstrate the difficulties faced by individuals. The process of applying for benefits when having M.E. was described as a 'game of Russian roulette'. In many instances Examining Medical Practitioners (EMPs) from the Benefits Agency either have very little knowledge of the illness or go as far as questioning its existence.
Anthony Wright MP went on to stress the need for GPs and other health care professionals to have adequate training and understanding of the condition. Their support can make a difference to ensuring a claim's success. In addition, the inadequate claim form does not provide a true representation of the severity of the illness. The physical assessment used in turn does not allow for delayed impact and pressure is placed on the claimant to sign the form on the spot in the presence of the examiner.
Another area of concern relates to the new Permitted Work Rules that recently replaced 'therapeutic work'. Anthony Wright MP called for changes such as raising the limit of weekly earnings, lowering the hour requirement and allowing more than 6 months for gradual build up of hours worked in chronic conditions such as M.E.
In her response, Minister for Work Jane Kennedy refers to the forthcoming visit of Maria Eagle (Under-Secretary of State for Work and Pensions) to the next All Party Parliamentary Group meeting to answer more detailed questions. Jane Kennedy makes assurances that the training of the EMPs includes CFS/M.E. and that the claim forms under criticism are being redesigned. In addition, the new permitted work rules are at 'an early stage' and undergoing independent evaluation.
The debate was a result of a January benefits presentation to the APPG by patient representatives co-ordinated by Action for M.E. Benefits issues are one of the main campaigning areas for the APPG on M.E. in 2004. The next APPG meeting will continue to focus on benefits problems relating to people with M.E.
A full transcript of the House of Commons debate is available (scroll a little way down the page). It's also linked from a page on the AfME website.
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
Please send feedback if you use any of these services.
The Jade Centre of Acupuncture & Chinese Medicine has a new address:
11 Blake Grove, Chapel Allerton, Leeds, LS7 3NQ
Initial consultation and treatment session (1½ hour) costs £50. (Information sent in by Louise A.)
Natural Progesterone - The Natural Way to alleviate symptoms of menopause, PMS and other hormone-related problems by Anna Rushton & Dr Shirley A. Bond. ISBN 0722537662. Published by Thorsons.
This book is written in a very easy to understand manner, with a series of Questions and Answers and helps readers to find out if they would benefit from its use, what the symptoms of oestrogen dominance are, why they might be suffering the effects of imbalance, what to do if you want to switch from HRT and which dietary and lifestyle changes can help.
A free 20 Page Booklet about natural progesterone is also available by sending an A5 size self-addressed-envelope to:
Wellsprings Trading Ltd, PO Box 322, St Peter Port, Guernsey, GY1 3TP www.progesterone.co.uk.
Easy GI Diet - use the glycaemic index to lose weight and gain energy by Helen Foster ISBN 600610020. Published by Hamlyn Books.
This book contains appetising recipes for meat-eaters and vegetarians; charts of Glycaemic Index foods and is in large print which makes it easy on the eyes. I personally have benefited from this diet as it helps the candida by eating more low GI foods and I have also lost a little weight.
I have stayed at Holy Rood on a number of occasions for rest and relaxation. I have always found my time there very helpful and encouraging.
Holy Rood House Centre for Health and Pastoral Care 10 Sowerby Road, Thirsk YO7 1HX
(recommendation from Robert M.)
A GP's belief about certain medical conditions may block patients from getting best care, say researchers. By analysing group discussions between 46 UK GPs, they found some tended to stereotype patients with chronic fatigue syndrome as "prone to stress". In contrast, patients with irritable bowel syndrome were seen to be battling with a debilitating disease. Such biases could block care, say the Medical Research Council authors in the British Medical Journal.
See the full BBC news online article is available and the report in the BMJ
The SEEN project at Women’s Health Matters are organising a Health Day/Healthy Living Event. It will be at the West Yorkshire Playhouse 10:30 to 3:30 on Thursday 9th September 2004.
Refreshments, lunch, crèche and transport are available. It will include information on how to get the best out of your GP, pampering, complementary health, healthy eating, fitness, jewellery making, and more. Contact Maggie at SEEN Project, Women’s Health Matters .
Leeds City Council, working with the taxi partnership group, have produced a booklet about taxis, aimed at disabled people.
Disabled people are using taxis more often for school, college, work, shopping or socialising. There are different types of vehicles on the road in Leeds, which suit different people’s needs.
Whatever type of vehicle you use, and whether you prefer taxis or private hire, it is important that you understand how they work so that you can make your journey safely. This large print booklet, which includes some drawings, will help you.
If you would like a copy of the booklet, you can download it in pdf format from Leeds City Council's website, to print out or reda on screen, but don't let the name of the file put you off! (you can always rename it once you have it). It is also available in braille, tape and on computer disc or by email, please get in touch with Gill Crawshaw in the council’s Equality Team. .
(Editor’s note: I also have this booklet in pdf format for anyone that would like me to email it to them)
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
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 S.. Please remember that the articles are only for information purposes and are not giving professional advice.
(By Jonathan S.)
Wendy is a 40-year-old Christian living in Bradford. She has been divorced for 19 years and has no children. Wendy works as a full time administrator in Leeds and a part time counsellor in Huddersfield. She has agreed to my interviewing her about her life since developing ME.
Wendy wishes to state that views and opinions expressed in this interview are her own and are reflection of her own experiences. They will therefore differ from and could be contrary to those of other ME sufferers. This in no way negates or invalidates anyone’s opinions or experiences.
I was a vibrant, intelligent, outgoing and very active person. I worked full time and regularly worked overtime early morning and at weekends. I went to the gym or swimming almost every day and often went out socially afterwards. I was pursuing an Open University course in computing and web design and an NVQ in customer service, both of which I had to eventually give up. I enjoyed wine making (and drinking!), DIY, camping and the outdoors.
Looking back, probably in November 1999. I thought I was just tired with working so hard. There were also other stressors in my life at the time, which I feel contributed to my developing ME. I remember having constant cold, flu and sinusitis symptoms along with extreme tiredness and frequent headaches, trigeminal neuralgia and migraines. I seemed to be living on painkillers and decongestants. There were many other symptoms that seemed to come and go for no reason. I was so worried I referred myself to my employer’s Occupational Health Service (OHS) in March 2000 but they put it down to allergic reactions to ‘something’ in the environment. My GP followed this up with allergy tests but nothing was found.
By May 2000 my condition had deteriorated further and resulted in my having 6 months off work. I was physically and mentally exhausted (practically bed ridden), had extremely bad co-ordination and balance, developed the ‘cotton wool head’ and severe short-term memory loss.
I had heard of ME/CFS or ‘Yuppie Flu’ but didn’t know anything about it.
From the onset of my initial symptoms, it took 2 years.
I feel it was ignorance and a lack of interest on the part of various professionals. Early on an acquaintance had suggested ME after hearing about my symptoms but my GP insisted that I was a ‘depressed woman at that time of life’ and ME did not exist. He prescribed many different antidepressants, which I took to humour him, but they didn’t work, I just suffered numerous debilitating side effects. He said that as I wouldn’t admit to myself that I was depressed the medication wouldn’t be effective.
As my GP seemed unable to help I signed myself back to work August 2000. Luckily my new manager had experience of working with employees with ME. He recognised my symptoms and agreed with this diagnosis. He was very supportive and helpful, referring me to what was now a new OHS and relieving me of my telephone duties. He encouraged me to learn about my condition and allowed me to use the Internet at work to find more information. This helped me to understand and begin to manage my condition. Unfortunately he has now left the company.
In April 2001 the OHS report confirmed my symptoms and suggested a diagnosis should be pursued through my GP. It also stated that I should be covered by the Disability Discrimination Act (DDA) and be given ‘restricted’ or ‘light’ duties. In May 2001 my employer produced a letter confirming this.
I continued to badger my GP but he would not change his opinion. He stated that ME specialists were ‘misguided, ill-informed quacks’ and suggested that I go elsewhere as he could not help me. I made appointments with other GPs in the practice but none were willing to make any attempt to help.
Eventually I managed to persuade, or rather, bully one of the GPs into referring me to the Chronic Fatigue Service at Seacroft Hospital, who finally confirmed my diagnosis on 28th November 2001.
It was a great relief to finally be diagnosed and get help, support and advice about how to manage my illness properly. The people at the Seacroft have been very supportive. I attended the Chronic Fatigue Group sessions in March 2002.
My employers, along with friends, colleagues and family still do not fully understand my condition, and some are not willing to try. I’m still being told to pull myself together and get back to the gym. Many offer alternative reasons and solutions for my symptoms; one colleague suggested it’s the menopause and a recent OHS report tentatively suggested that it could be psychosomatic. I’m now with my 3rd GP surgery and again ME is almost a taboo subject.
Ooh, difficult to choose just one! Initially it was accepting that I actually had ME, and the short-term memory problems. It always seemed to be something other people got. I thought it wouldn’t happen to me. Luckily I have a good sense of humour so managed to laugh at myself, especially when I regularly forgot I’d done the shopping and ended up doing it twice!
Now it’s the fact that it’s a hidden illness, coupled with a general lack of understanding. People constantly assuming you’re well, mentally and physically, because you look OK even when you don’t feel it.
I contacted a private consultant nutritionist (recommended by NHS Direct as an ME specialist), as my symptoms seemed to be worse after meals. I developed rashes, headaches, bouts of sneezing and many other symptoms, particularly when eating out. The blood test results showed that I had no allergies but intolerances to a wide range of common foods including wheat, Soya, yeast, dairy products, sugar and food additives such as monosodium glutamate. I’m even intolerant to simple things such as grapes and lettuce!
The consultations, medication and tests cost around £1500 but I now know the blood tests could have been done directly through the testing company and my GP for £125!
I followed the recommendations of the report and stuck to a restricted diet for about 6 months. My symptoms gradually improved but eventually reached a plateau. I wasn’t fully recovered (about 60%) but could function without constant fluctuation of my symptoms. I now stick to a fairly restricted diet, but do allow myself some indulgences when I know I can rest and recover afterwards.
I joined the Bradford ME Group for support but unfortunately this has now disbanded.
A couple of years ago I changed my GP and was advised to stop the Depo-Provera injections I had been given for over 5 years. I was having Fibromyalgia type pains in my back and legs and he suggested this could be linked to osteoporosis, which may be caused by Depo-Provera (Previous GPs had advised that I continue with the medication as PMS on top of my current symptoms could send me into relapse, even though they would not confirm ME!). It took 6 months for me to be clear of the effects of the medication. This had a major impact in improving my symptoms. I felt like I’d come round from anaesthetic! I now feel about 75% recovered and manage quite well. The headaches have all but gone and my short-term memory is much improved. I still have problems with learning new things, information overload, and a low stress threshold. I am physically weak due to a sedentary life style and have large chunks of past memories missing. I still get the back/leg pains but these are controlled by medication.
I’ve always kept my sense of humour and believe my ability to see the funny side of things is a key element in managing my condition. One thing I did decide early on was that I have an illness and have to live with it. I can however influence my outlook. I’m ill. I can be miserable and ill or happy and ill. I choose to be happy. I have the illness. The illness does not have me.
I continue to work full time as an administrator and in September start the final year of a part-time Advanced Diploma in Christian Counselling. I’ve recently got engaged to a fellow sufferer, who I met through the Friendship List, and I look forward to getting married in the next year or so.
I joined after the Bradford group folded but hadn’t attended meetings due to other commitments. I’ve made sure the meetings are in my diary for this year and will attend whenever possible. I realise I’m living and working in an able bodied world and seem to be doing poorly in comparison to other people. Meeting with other ME sufferers again has made me realise how well I am actually doing under the circumstances. I have really enjoyed meeting members and find their friendship and support invaluable.
I hope my story will get a positive reception and be an encouragement to other ME sufferers.
The deadline for submissions for November’s newsletter is September 15th 2004
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.
