Report from the The National Task Force on CFS/ME
Gordon Painter would be interested to speak to fellow members who have the freedom and the interest to travel abroad for two to four weeks during the winter months. He can be contacted on 0113 225 2607
Further information about social groups for single people of all ages is required. Would anyone with current or recent experience of the Nexus group, or any other social group, be willing to provide general information, comments etc. about the suitability of groups for ME people in their 30's, 40's, 50's trying to carve out a social life for themselves within the limits of their illness? If you can help with any of this information please contact Chris M. 0113 268 9448.
Leaky Gut Tests 
(Information from Gordon Painter)
The leaky gut test, called the gut permeability test is available on the NHS with the agreement of a GP or Consultant. This is a home test kit using lactulose/mannitol sugars and is arranged by the Department of Gastroenterology at Leeds General Infirmary.
The Village Bakery (Information from Sue Heppenstall)
The Village Bakery, Melmerby Ltd., Melmerby, Penrith, Cumbria. CA10 1HE.
The Village Bakery sell a wide selection of cakes, breads etc. for people on special diets e.g. wheat free, sugar free, vegetarian etc. They deliver all orders.
Visit http://www.village-bakery.com or phone 01768 881515 for more details.
Dry Skin Brushing (Tip sent in by Sue Heppenstall)
"I suggest a long handled natural bristle brush. It may help if this is washed a few times to soften it. Brushes can be bought at Boots, Health Food Shops or the Body Shop etc.
Start the day by helping your lymph system's ability to detoxify. Do this before you bath or shower. Start with the legs and feet using gentle circular actions at the groin and long firm strokes towards the heart. Move on to your arms and hands and the lymph nodes under the breast muscles. Cover the rest of the body where possible and finish with the stomach, moving up on the right and down on the left. Now you are ready for an invigorating shower or bath. This method is an alternative to massage.
Lymph is our second circulatory system. By massage it chiefly affects the flow of lymph, the blood back to the heart and circulation. It is useful in cases of fatigue, aids elimination of waste and broken down products, helps healing processes and increases the nutrition of tissues. The function of the Lymphatic System is to protect the body from disease and to create immunity. The Lymph System also removes excess fluid which has accumulated in the tissue spaces. Personally I have found that when my body is in pain this method works well, if you have the energy to do it!
Also if you have stiffness, aches and pain during the night I have found comfort with brushing which saves the use of painkillers as well as creating a feeling of well being and relaxation."
Thank you to Gordon and Sue for the information they sent in for this section. Please remember we would like to hear any similar tips you may have.
Thank you very much to all the members who very generously contributed to our voluntary subscription appeal in the last newsletter. We really appreciate your support, particularly as we know that the majority of you are unable to work and extra money can at times be hard to find. The money raised has funded this edition of the newsletter.
Midland Bank, Chapel Allerton. £18.34
Shopmobility, White Rose Centre. £147.28
Our thanks to the Midland Bank , Shopmobility
and all who contributed to the collections.
Geoff Wright, husband of Maureen, raised £50 by organising a raffle at his local golfing society, with his own paintings as prizes. Thank you to Geoff and everyone who supported the raffle.
Our latest fund-raising venture is the sale of knitted toys.
Miss Edith Wilkinson has very kindly offered to knit these toys for us to sell. They were previously made for sale at a charity shop in York. We have been chosen as the new charity to benefit from the proceeds of the sale of the toys.
The toys will be on sale at Leeds meetings from November, (prices range from £1.50 to £7.) depending on what we have in stock, the first lot we received sold out very quickly. They are all beautifully hand knitted, each toy is different and the detail on them is amazing. The toys come in all shapes and sizes. The last stock included dinosaurs, ballerinas, rabbits, footballers and many more.
One of our members, who unfortunately has rather a lot of experience of attending DSS tribunals, feels that the outcome of these have been very much affected by the standard of representation he received.
It has therefore been suggested that the group compiles a list of representatives whom members have found effective in the hope this will benefit others in the future.
If you have been through the trauma of a tribunal but feel that the positive outcome was helped by the person who represented you please could you pass this information on to the group. We need representatives from all areas of Leeds and Wakefield.
If you can help please pass your information on via the Helpline numbers.
The Wakefield branch of DIAL have recently moved premises. Their new telephone number is 01977 723933.
A number of our members who were former NHS employees have had an enormous amount of help in successfully obtaining their pensions from Monica Dale. In fact without her help many would still be fighting for their pensions today.
Monica, a former midwife fought for nine months to get her own pension. When she had been successful herself she decided it would be a shame to let all the information she had accumulated go to waste so she has since used this information to help other ME sufferers.
Monica is willing to advise anyone applying for an occupational pension whatever their occupation was; you do not need to have been an NHS worker.
Contact Monica Dale at Springhill Farm, Millfield Avenue, East Cowes, Isle Of Wight PO32 6AS or phone 01983 299033. There is more information at http://www.funfarm.demon.co.uk
An article on occupational pensions will appear in the next Interaction, the Action For ME magazine, due out this month.
The Working Party that is currently being set up by the Department of Health to review services to those living with ME, has announced the make up of the group.
Dr Allen Hutchinson, Professor in The School of Health & Related Research at Sheffield University will be chairing the group. Dr Hutchinson is an expert in the development of clinical guidelines.
The full list is published on the government's Central Office of Information website (click on Dept of Health)
At the ME Association AGM which took place in York, Dr. Abhijit Chaudhuri, Clinical Lecturer in Neurology at Southern General Hospital, Glasgow, gave a persuasive presentation in which he argued that ME may be centred in what he termed "the excitable tissues" i.e. the nerves and muscles.
Abnormalities have been found in both the ion channels and potassium channels in ME patients, leading to fluctuations in electrical activity. This suggests that ME may be a "channelopathy". Drugs to correct channelopathies are already being researched, but a specific drug for ME would take several years to develop.
Apparently channelopathies are very much in vogue in medical research at the moment, so if it transpires that ME does indeed fit into this category, then it may be very good news!
Dr. Chaudhuri also gave some useful information to counter the fashionable belief of many doctors, and psychiatrists in particular that the fatigue problems encountered by ME sufferers are due to deconditioning of the muscles brought on by excessive rest.
According to research, the muscles of most ME sufferers do not in fact show evidence of deconditioning, and data taken from ME sufferers who are exercising shows abnormalities e.g. a slow heart rate response, which cannot be explained by deconditioning. ME sufferers have also been shown to use more energy at rest than other people.
If your condition seems to get worse as the nights draw in, it is possible that Seasonally Affected Disorder (SAD) may be part of your problem and a light box may help. This provides the light that you do not get from the sun in winter. One of the manufacturers, Full Spectrum Lighting Ltd. (01494 526051), supplies light boxes on a 28 day trial basis. If you are not getting any improvement you can return the light box within the 28 days and get a full refund. The boxes range in price from just over £90 to £200. Light boxes are also available from other manufacturers. For further information on SAD and light boxes, contact The Secretary, SAD Association, PO Box 989, London SW7 2PZ, enclosing a SAE. They also have details of local SAD groups.
A Helping Hand Through ME Chronic Fatigue Syndrome
A Self-Help Guide For Sufferers And Their Families
By Janet Hurrell.
Published by Foulsham 1998, in paperback at £9.99
ISBN 0-572-02438-X.
Reviewed by Valerie Bloom.
This is a new book on the market, packed with information and advice. It is written by a sufferer, Janet Hurrell who has had ME for eight years. The drawback is that despite all the knowledge she has amassed about treating ME, she is still not fully recovered, although much improved. That is why although I found this book to be fascinating and helpful I have a few reservations.
Even if you are a long term sufferer then there may just be one or two helpful treatments mentioned you have not yet tried. If you have just been diagnosed this book will throw some light on your problems. Ms Hurrell is fairly dismissive of orthodox medical treatments such as Prozac and other prescribed drugs.
The information she gives is more varied or maybe it is more up to date than is usually the case and therefore the book deserves reading even if you have already read everything on ME that is easily available. Also the print is clear, larger than is often the case and the text is broken up into small sections.
On the downside I had some criticisms and reservations. The chapter on supplements does not discuss safe dosage levels and you therefore need to read it in conjunction with say Dr. Anne Macintyre's book, (which is available from Action for ME). The chapter on help and where to find it is short. There are some types of general help available that she does not mention.
The book is slim (200 pages), but helpful information is scattered about the book, difficult for the ME brain to take in at one go. There is almost too much in it, she recommends so many different treatments, hardly any of them available on the NHS. Perhaps the best way to read it is with pen and paper in hand, one chapter at a time and keeping an open mind on the treatments suggested.
The following information was sent to us by Russ Bassett from Watford.
" Have you, or your relatives got access to a photocopier or computer / printer ? "
We would very much appreciate it if you could help us to produce copies of our posters and car stickers, publicising ME. Even if you can only do a few sides of A4 it would be a great help.
Are you or do you know anybody in the UK who is on the Internet ?
I have a large web site containing pre-prepared posters car stickers, letters to MP's etc. etc. ready for people to print out- plus information about ME research and political developments. Also on the website I appeal for volunteers to help me publicise ME. Please visit and/or tell people about my web site at
http://members.aol.com/MEPCmail/
The information set up on the web site by Russ makes it a lot easier for you to campaign about ME issues. All the information is there for you, already produced. Even if you just want a poster or a car sticker to educate people about ME all you need to do is copy the pre prepared material from the Internet.
Free and confidential energy advice surgeries will run from October to April, providing energy advice on heating system use, condensation control, grants and budgeting, phone 0113 214 5179 for further details.
You can also call this number for impartial information regarding electricity deregulation which comes to the Leeds district in December.
For a DIY Home Energy Check phone 0800 512012.
If you no longer wish to receive the newsletter or you change your address please contact: Moyra Andrews at 12 Kings Lea, Ossett, Wakefield WF5 8RY.
BEST WISHES FOR A VERY HAPPY CHRISTMAS AND A HAPPY AND HEALTHY NEW YEAR TO ALL THE MEMBERS OF THE LEEDS & DISTRICT ME GROUP
Please send items for inclusion in the March newsletter by January 17th 1999
