July 2001 Newsletter - Part 3
Remember, you can also click on the lines separating articles to return to the newsletter contents
Remember, you can also click on the lines separating articles to return to the newsletter contents
One of our committee members, David R, has recovered enough to start working again, albeit, part time. David first started to feel ill towards the end of 1998 but carried on working for the next year. By December 1999 he was too ill to work and was signed off sick by his GP with CFS.
Luckily, (or not, depending on how you look at it) David already knew a lot about ME and how to manage it as his partner had been ill with ME since 1997 and after attending the Leeds Fatigue Service he started to improve. By December 2000 he was feeling well enough to work part time, so with the support of his GP, David signed off Incapacity Benefit and went on to Jobseekers Allowance on the understanding that he would only be looking for part time work. Now, after six months of being unemployed, he has finally found a part time job which starts this month.
His new employer is aware of the illness and doesn't regard it as a problem. David is going to work afternoons only and may increase his hours in the future at his own pace.
When we asked David if anything in particular had helped him to get better he said that he felt the key had been learning to 'pace' things (as taught by the Occupational Therapists at the Leeds Fatigue Service) and obviously a bit of luck!
We realise that many of you have had a much longer struggle with ME and that improvement can be much more difficult to achieve. However, we thought you would like to hear some positive ME news and in particular that it is possible to find employment after illness.
The following book review is taken from Interaction, No. 35 November 2000 - the journal of Action for ME, PO Box 1302, Wells, Somerset BA5 1YE 
01749 670799. Reproduced with the permission of Action for ME.
The Final Surrender (A journey to Wellness) By Jan Brumfitt. £2.50 plus 50p P&P is available from Jan herself. Her contact details are: 99 Moorside Road, Drighlington, Bradford BD11 1JB 
Review by Elaine Myers.
This is a short, inexpensive book which charts Jan Brumfitt's recovery from a particularly severe form of the illness. She was ill for a total of four years and at one point was completely bed bound, unable to speak on the telephone for more than a couple of minutes and with moments of feeling suicidal. She now leads a full life and never relapses.
Her own customised programme may not be to everyone's liking but her underlying belief is that it is perfectly possible to regain full and lasting health and she outlines how she did it.
I particularly liked the analogy of a set of stairs, half in darkness and half in light. Once the first half has been completed and the individual emerges into daylight, any therapy or drug thrown at the illness has a greatly improved chance of success. She explains clearly why healing doesn't always work quickly.
Although Jan is quite evangelical about diet (describing meat as putrefying flesh and toxic may not be helpful and her dietary advice verges on the brown rice mafia), she outlines lucidly how and why the therapies she used worked for her and which treatments best addressed pain relief. Because she suffered severely from candida, she responded very well when relinquishing the foods that the yeast thrived on.
It does seem at one point that she has unlimited funds to try different treatments, but she makes it clear that it is possible to improve ME symptoms without spending a great deal of money.
Jan also feels that she would have recovered if she hadn't undertaken so many types of treatment once she understood what was happening to her in terms of energy, emotions and body chemistry. It just would have taken longer. Certainly I shall be putting some of her suggestions into practice.
We have had positive feedback from people in the group who have read it.
Table Top Sale - at the home of Chris & Simon - £170.95
Thank you to everyone who contributed to this successful event, which includes those of you who helped on the day, donated items for sale or came along and spent money! Special thanks to Chris and Simon for hosting the sale at their home.
Table Top Sale - Bramham Methodist Church Hall - £81.51
Thank you to the volunteers who ran the stall.
Supermarket Collection at Morrisons Supermarket, Kirkstall - £184.46
Thank you to Morrisons for allowing us to collect at their store. Thanks also to their customers for their generosity. Most importantly, thank you to all our collectors. We really do appreciate your support.
Thank you to those of you who have made donations to group funds.
(From Vivienne Wakerly) Just in case anyone is feeling that they only see badly written or unsympathetic media stories, here are a few positive ones I spotted recently:
Marie-Claire (Women's monthly magazine)
They ran a factual and sympathetic piece on ME. The letters page in three subsequent issues printed letters congratulating them on the piece and added more personal ME experiences.
Boots loyalty card Health & Beauty magazine
They published a three page article combining the personal story of an ex-fitness instructor (now author), with facts about ME. "Have I got ME or am I just tired?" stressed the differences clearly. The letters page in the following issue showed support for the article and told more personal stories.
Television - North of Westminster (BBC2, Sundays)
In April they transmitted a ten minute piece which centred on "an over aggressive and unsuitable benefits system". Various MP's gave their support. Overall, the pictures and audio portrayed ME sufferers with respect and sympathy. The programme will also cover the Chief Medical Officer's Report into ME which is due for publication shortly.
Stillpoints is an informal contact group for people with ME who are either practicing Buddhists or who are interested in learning about meditation and Buddhism. For details email Joelle Marlow
If you would like to preserve your energy for something other than gardening, we have received a recommendation for Viridian Garden Services. They are a Leeds based team of four gardeners - Louise, Lizzie, Ben and Susan. They will give you a free consultation and quote for the work you need doing. The maximum charge is £8.00 per hour. Contact the team on 0113 262 4408.
Selclene provide a cleaning and ironing service. They charge £7 per hour for regular cleaning. See their web site www.selclene.co.uk.
All Hallows Community Café, Regent Terrace, Leeds 6, offers cheap and nutritious food, according to one of our members. It is open on Wednesdays and Thursdays between 9am and 3pm. Regular events run at the café include: Tai Chi Classes (Mondays 7-9pm) and Healing (Thursdays 12 noon to 3pm - in the church). 0113 242 8455.
Thanks to Martin Conroy for sending us the following recipe for Soda bread. The bread is yeast free and sugar free for those of you on restricted diets (although obviously not wheat free). According to Martin it is also easy to make! Happy baking!
Sift dry ingredients and make into a dough with the liquids. Quickly form into a round flat loaf and place on a greased baking tray.
Bake in the oven at 230°C/450°F, gas mark 8 for thirty minutes. To test if the bread is cooked, tap the base of the loaf. If it sounds hollow it is ready.
Voila!
If you have a similar (short!) recipe, which you think others would find useful, please, send it to us
and we will publish it in a future newsletter - space permitting.
Sainsbury's Moor Allerton Store have recently increased their stock of wheat free and/or gluten free products. These include: two Village Bakery wheat-free breads (Rossisky and Borodinsky) and two varieties of Terence Stamp wheat free breads; Orgran wheat-free pastas; Nutricia wheat-free biscuits; Dove's Farm - wheat-free lemon biscuits and Sainsbury's own flapjack is wheat-free.
Sainsbury's have shown a willingness to increase their range of such products (at the Moor Allerton store). It may be worth asking your local Sainsburys store to add these products if they don't already stock them. Please let us know of similar product availability at other supermarkets
From Vivienne Wakerly.
If you don't have Internet access, but still need to save on leg work and arm work, you can do so by using the humble telephone!
Sainsbury's do take telephone shopping orders (as well as Internet). We have checked this out and most addresses in the Leeds and Wakefield area can use the service. Most telephone shopping orders for the Leeds and Wakefield area are dealt with at the Bradford store rather than your local Sainsbury's. To check if they will deliver to you contact them on 0845 301 2020.
They can send you a helpful information pack and if you use a loyalty card when shopping in store they will send you a shopping list based on what you have ordered before (although your order is not restricted to what's on this). They charge £5 for delivery - but it is for any amount, so perhaps you could stock up on heavy and non-perishable items once a month. Remember it's not just the energy you will save on getting the goods home, but all the walking around the aisles, handling the items, pushing the trolley and getting through the tills!
Iceland Frozen Foods also offer telephone shopping and delivery. Contact them on freephone 0800 3280800. They will send you a catalogue with all the details of how to order etc. Delivery costs £4 and orders made before 3pm will be delivered the next day.
I've used HMV Direct on 0800 334578, paying £1 P+P for a tape.
If you can't get to the shops to buy clothes, catalogues are a great alternative. At least in catalogues you can see immediately what an item looks like on a body (however perfect!) before spending energy trying it on, whereas in a shop it hangs flat on a hanger. With many catalogues you don't even have to get yourself to the Post Office to send back returns as they employ couriers both ways. You often pay for delivery (but not for returns). If you don't buy as soon as you get the catalogue, offers on P+P or % off usually follow.
A few examples of catalogues you may find useful are:
0500 777 777
0870 541 1111
0845 6099099
0845 600 7000 ( please note you have to pay £3 for the Next catalogue)
These all sell clothes for both men and women. Next also includes children's clothes.
Betterware deliver free (in person). If you miss one of their brochure drops, phone customer services on 0845 1431010 for your local agent.
Lakeland seems to be a well regarded company. Good quality items. 015394 88100 (Free P+P on orders over £38).
Argos - for household, clothes, furniture and everything! Free delivery on large spends and free home trials for things like furniture. 0870 6003030.
Boots Living Aids Catalogue 0800 000 777
If you can recommend any similar contacts you have found useful, please let us know, write to Jane Ashworth.
(From Vivienne Wakerly)
It can be difficult, with ME, to hold the phone up to your ear. After a long search the only commercially available headset phone I could find is in the Converse range, available from BT at an approximate cost of £45 plus £60 for the headset. The Audio-line phone mentioned in "Interaction" (AFME's magazine) has been discontinued. If anyone knows of any other headset phones, (preferably cheaper ones!) or very good speaker ones please let us know, contact us via one of our Helplines or email.
ServiceCall is a system designed for disabled people in order to make it easier for them to use shops and services. The service is simple to use as you simply aim a small infra-red transmitter to activate one of the thousands of ServiceCall receivers in the windows of banks, shops, petrol stations etc. The receiver then bleeps for about 5 seconds to alert staff inside that you require assistance and they then come to serve you. ServiceCall provide you with a car sticker so that staff can identify you. The following companies (and others) use ServiceCall: The Royal Bank of Scotland, Tesco, Sainsbury's and Esso. For more information, please call 01629 812422.
The views expressed on this website are for information only and should not be used in place of advice from appropriately qualified and experienced professionals.
The views given may not be those of the Leeds & District ME Group, the President, the Newsletter Editor, the Website Manager, 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 web site 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 possibly make you worse.
These comments also apply to information which is given at our meetings, via our helplines and by email etc.
