A word from Adrienne:

Thank you to everyone who braved the cold to come to the first meeting of GYMS. I have looked at your suggestions and edited them. Diane and I are researching pubs to meet up in. The idea is to travel to different locations and group members from the area will pick out a suitable venue! We do have a few rules for the Club which will be discussed at our next meeting. Pen-pals is another topic and this is a idea that could be investigated further. It could be an ideal way to talk to people who are nervous about coming out? Fundraising is very important too as money will go to provide Minibus fare when we travel and could help with the costs of tickets for concerts etc. Richard Johnson's sister is preparing to leap out of an airplane with her friends, tandem skydiving for GYMS! Anyone fancy joining them?

(Contact Sylvie.) We are also following up the suggestion to organise an abseiling event. Rest assured one of the MS nurses will stand at the bottom with her 1st Aid Kit!!! She will remain nameless! So please can we have some more Good Ideas!

Adrienne Cox- MS Nurse Tel. 0114 271 2302

Nasal spray may offer protection against MS (The Guardian)

Trails led by scientist David Wrath are due to begin at Bristol University on an nasal spray MS vaccine. The hope is to re-educate the body's immune system so that it no longer attacks the myelin sheath, using protein pieces called peptides. These may convince the immune system that it is completely harmless tissue and so prevent the attack on the myelin involved in MS. The Bristol scientists have isolated several peptides from myelin. David Wrath states "We have these fragments to create a protective treatment for the disease".

This Antigen-specific immunotherapy is based on a discovery by Dr. Lenardo and his colleagues at the National Institute of Allergy and Infectious Diseases (NIAID) that a disease similar to multiple sclerosis (MS) in monkeys has been effectively treated by this approach. The therapy's promising results show that T cells exposed to small amounts of the proteins making up the myelin sheaths are stimulated to attack the sheaths. But T cells exposed to large amounts of the same proteins will undergo a pre-programmed "self-destruct" sequence.

"Therefore, introducing large amounts of myelin proteins into the body should remove the problematic T cells and halt the disease", Dr. Lenardo explains. "The therapy is counter-intuitive; one might think it would be like pouring gasoline on a fire," Dr. Lenardo says. But the self-destruct sequence actually protects the body from having too many active T cells, which can themselves be toxic. "Like any potent weapon, you want to control how much is deployed," Dr. Lenardo explains. "The immune system doesn't let your T cells grow uncontrolled and kill you. In this case, adding more antigen smothers the fire."

Journal of Immunology 166(3):2116-21 (2001).

Hi Folks,

It was great seeing you all at our first meeting! For those of you who couldn't make it we hope to see you at the next one. Thanks again to David Cobb for paying the cost of the room at Ponds Forge and for coming along on the night! I am at present seeking funding for GYMS, so please if you have any good contacts, pass them on to me. The more funding we get the more we can do!

In the next few months I am also looking to organise some kind of wild fundraising stunt (again see notice), to draw attention to our Group in the local press and raise some money for us. As far as I'm concerned the crazier the better, so all ideas and volunteers welcome!

What do you want from GYMS? I would like to see the Group as a Self-Help Support Group. My reason for this is that through my experience with MS I have learnt that there really is so much you can do to stabilise the illness, prevent relapses or at the very least give yourself the best chance possible of promoting a fast recovery (I call this damage minimisation). Remember there is no such thing as failure, because the only failure there is, is not trying!

I felt life had dealt me a pretty tough card with MS but I began to realised it was entirely up to me how to play it! I could choose to play the victim, or I could choose to search for ways of managing my illness and taking control. That would not be easy. That would mean acceptance of MS and changes in my attitude and lifestyle. I have found that the right attitude is crucial, that and the willingness to work with what you can do and can achieve and not with what you can't or what you have lost. Self-pity has its place but at the end of the day it doesn't attract the great things or people into your life that you need does it!

It is also important to be willing to change and move forward with your life. If you have a disability you can often get around the problem, there are ways around most things once we come to terms with them. If you don't like your life and what you are getting, then change it, change your lifestyle, your diet, try different supplements, work out an exercise plan etc. Always focus on what you can do, set yourself goals, plan what you want in your life and then GO FOR IT!

Sylvie (Editor): Webpage:- www.livingwithms.co.uk

-MS Humor Survey -

Most people (77.9%) who participated report that humor has had beneficial effects. The three most frequently reported benefits of humor, in order, are decreased stress (88.3%), decreased depression (74.9%), and improved relationships (65.9%). Other benefits included increased hope (41.4%), increased sense of control (36.0%), improved independence (31.1%), decreased pain (20.2%), and decreased fatigue (18.8%). Relatively few (7.6%) thought that humor produced undesirable effects in their lives. Of that small group, the most frequently reported problem was related to hiding emotions behind humor (63.9%). Most people who responded do not seek humor out as a strategy for controlling MS (83.9%). Many (47.1%), however, report seeking out humor for other reasons.

MS-CAM (MS Complimentary & Alternative Medicine Centre). www.ms-cam.org

Well I hope these results excuse the bad MS jokes on the back page!!! Editor

Hello friends how are you keeping?

With MS we have many physical symptoms but our state of mind also plays a big role in how we are feeling at the end of the day. We still have a choice in that if we choose to allow ourselves to feel miserable we will end up feeling a lot worst than if we choose a sunny outlook. There are many ways to help us to keep a bright attitude.

The one I find the most effective is: "Transcendental Meditation". There is a lot of talk about it, as if there's a veil of mystic or magic about it but that's a load of old cobblers as it is quite easy, simple and safe to practice! All you really need is to want to do it! Find yourself a quiet room where you will not be disturbed. Just sit own quietly and breath in and out from the diaphragm. Next make sure that you are relaxed. I mean properly relaxed.

Then start breathing in and out really deeply, listening to the natural rhythm of the breath. When I breath in I like to use the mantra (which is a word or short phrase) 'raising' (as my tummy rises up). And when I breath out, 'falling' (as the diaphragm relaxes back). If possible try not to think of anything else but if the mind wanders, I simply note the thought (or chain of thoughts) without getting involved with them and then simply bring my focus back to the breath. It will probably take you between 5 to 10 cycles until you set your mind free, but don't worry too much if you cannot quieten the 'mind chatter' straight away. This will happen in its own time.

Whatever level you are on, you will still benefit from this daily practice. When you successfully meditate, you feel as if you are millions of miles away, although you obviously haven't physically moved at all. I practice it everyday and it keeps me in very high spirits. Give it a go and see how well you will feel. It costs nothing and will make you feel great! Have a go!

DANIEL Email: Buchsbaum@cwcom.net

Unpublished Study says sunshine may prevent MS.

National Post, Jan. 8, 2001

As if the snow weren't enough, there may be another reason to head south in the winter. Sunbathing may be the best way to protect yourself against multiple sclerosis. It has been known for at least 50 years that people in high latitudes face a 100 times greater risk of contracting the disease than people living at the equator. There is even a four-fold variation in the number of cases in the United States between the southern states and the state of Washington, the Royal Geographical Society/Institute of British Geographers' conference in Plymouth was told last week.

Graham Bentham, from the environmental sciences department of Britain's East Anglia University, has conducted a statistical study that he believes explains these geographical variations for the first time. He said his study, which has yet to be published, successfully tested the hypothesis that the variation could be explained by geographical differences in exposure to ultraviolet-B (UVB) radiation, the body's principal source of Vitamin D. The study found that the higher proportion of oily fish, rich in Vit. D, in the diet of Norwegians and Icelanders was likely to account for their lower rates of contracting MS compared with other northern Europeans. Bentham also found that populations that tended to eat a lot of animal fat were more likely to get MS

Best excuse I've heard for a good holiday in the sun! Can we have this on the NHS please? And if you can't make the holiday then why not give the sunshine vitamin D3 supplement a try? Editor

Letters

In response to the article on Essential Fatty Acids (EFAs) as a dietary supplement for those who have MS, a better source of the EFA present in Evening Primrose Oil (EPO)- (GLA-Gamma Linolenic Acid), is Starflower oil, which contains four times as much GLA per unit weight as EPO.

Regarding the article about drinking enough fluids, try Cranberry juice, as it helps prevent urinary tract infections (UTIs). It works by preventing bacteria sticking to the bladder wall, so that they are more easily flushed out when you pass water.

A further nutritional gem is Gingko Biloba, which may help improve cognitive ability. I normally take it as part of a multi-vitamin. Sanatogen do a one-a-day vitamin that contains both Ginko and Gingseng (good for energy) and is reasonably priced. Superdrug do a similar one but considerably cheaper. Both are marked as being 50+ but don't let that put you off! All the items mentioned I use personally and they work for me, so I find them work taking but that doesn't mean they will work for everyone!

Jean Domingue Email: jean@jdomingue.freeserve.co.uk

How Super antioxidants are helping many people with MS!

Most people have heard of Antioxidants such as Vit E, Vit C, b-Carotene & Selenium, but have you heard of Super antioxidants, known as Proanthrocyanidins (PCO's or OPC's) which are up to 50 X more powerful than Vit.E? Anti-oxidants are nutrients that fight the effects of ageing by moping up free radicals which left unchecked damage cell membranes and are involved in degenerative conditions such as Multiple Sclerosis. They also reduce the risk of getting cancer and improve immune function.

The main sources of Super antioxidants can be found in *Pycnogenol or French maritime pine bark extract. * Blueberries. *Grape Seed Extract. *Tea & Red Wine. These all contain the valuable OPC's!

Super antioxidants are thought to work for some people with MS, not just by their ability to improve immune system function but also by strengthening the Blood Brain Barrier, the breakdown of which is involved in auto-immune illnesses such as MS. Although the evidence is not scientifically proven many people with MS benefit from taking these super anti oxidants supplements. There are others for whom it has made little or no difference to. But what have we really got to lose by trying?

These supplements don't come cheap in the UK however, so that is why I recommend getting Grape Seed Extract (GSX) from Daniel a great Guy in the USA, whose wife has MS: www.soopergrape.com . I can assure you Daniel will really look after you and you won't find it cheaper (under $ a gram!!!) elsewhere!

Editor-Sylvie.

Cannabis Spray eases MS pain.

The interim findings of this small study are regarded as an important step towards the legalisation of cannabis for medical use. Between 70-80% of 13 MS patients in a trail on cannabis spray say that it significantly reduces pain. Benefits found include not just pain relief, but a better quality of life, improved sleep, and a return to more active lives according to Dr Willy Notcutt of the pain relief clinic at the James Paget Hospital, Great Yarmouth. Alan Milburn, the Health Secretary has stated the Government's willingness to legalise the medical use of cannabis if trails show it can be of 'clear benefit'. A larger trial on cannabis with 660 MS patients is now in progress, funded by the Medical Research Council.

Thanks to the Times & Daily Telegraph

Do you have MS or do you care for someone with MS?

The Multiple Sclerosis Therapy Centre has grown out of a small group of unhappy dissatisfied people with a problem that has no answer, into a responsible organisation with a strong membership. Today's MS Therapy Centre offers support for people with MS and their families, and provides the facilities for a wide range of therapies.

We at the MSTC encourage positive thinking, remember it is you, who have MS, MS doesn't necessarily need to have you! We are currently going through a period of change. With a new purpose built therapy centre nearing completion we will be expanding the number of available therapies even further! If you are not already a member, why not join us at this exciting time. We can help you manage your condition, keep you up to date with all the latest information on research, and help you to help yourselves through mutual support. I look forward to seeing you.

Tel. (0114) 2448435 Carol Wilding- Centre Manager.