Hi Folks!

How are you all doing?

Thanks to those of you who came to Alton Towers. It was a pretty mad day out. I hadn't realised just how many rides I'd have to go on, so that my boyfriend wouldn't have to queue up!!! I hope others of you weren't too overwhelmed and enjoyed the day!

We have postponed our more formal meeting as our venue, the Sheffield MS Therapy Centre, is temporarily closed as they move buildings. We do however need to discuss what you want for our Group. So please feedback your ideas to me at our next meeting in Bar Coast on 24/10/01. I need your opinion on issues such as funding, charitable status and whether we want to be a part of the local MS Society or remain a separately run social group.

In this issue I have covered three important topics. Firstly there's the article about GYMS. Do you agree with these aims or have I got it wrong? Secondly, articles about NICE's decision on Beta-interferon, what this means for us and what we can do about it (see enclosed draft letter). Finally the important issue 'Diet & MS' and the urgent need for Research.in this field. I have also written about UTI prevention, a delicate issue for many but never the less important to talk about because if this problem isn't addressed the repercussions can be devastating. So please BE AWARE. Awareness is a powerful tool in staying two steps ahead with MS, which, believe me is half the battle!

Sylvie - Editor

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Myelin-Growing Cells Injected Into Woman with MS

By Merritt McKinney NEW YORK (Reuters Health) -

In an experimental procedure that holds promise as a treatment for multiple sclerosis (MS) researchers have transplanted nerve cells into the brain of a woman with MS. MS destroys cells called Oligodendrocytes, which produce the myelin that covers nerve fibres in the brain and spinal cord. But the myelin that protects peripheral nerves, which are found in other parts of the body, is produced by cells called Schwann cells, which elude the attack of MS.

In animal studies, Schwann cells have been able to fill in for destroyed oligodendrocytes to produce myelin for the brain and spinal cord. Last week, Vollmer and his colleagues tested the approach in a woman with MS. On July 17 they removed a nerve from the patient's ankle. The next day, after isolating Schwann cells from the nerve, they injected the cells into the woman's brain in a technique called stereotactic surgery. The lady is doing well.

Six months from now the researchers will use MRI scans to look for signs that the Schwann cells have survived and grown to produce myelin. Even if the transplant proves to be successful, "it's not likely to result in major improvement in the patient's function,'' Vollmer noted. He explained that Schwann cells were transplanted to a site of MS damage, or lesion, in the brain that was safest and not the major source of symptoms as the goal of this phase of the study is to make sure that the procedure is safe and to determine whether transplanted cells can survive.

If the procedure does pass the first round of tests in this patient and others, Vollmer said the team hopes to transplant the cells into the types of brain lesions that cause most of the disability in MS patients. Eventually, they may try to transplant other types of myelin-growing cells to see whether they improve symptoms in MS and other myelin destroying diseases

Late breaking research news from Australia: http://www.abc.net.au/pm/s350205.htm

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-GYMS (Group for Young MSers)-Our Story!

The desperate need for a Group like GYMS emerged when MS Nurses, Adrienne Cox and Diane Watts who work at the Royal Hallamshire Hospital in Sheffield, found many young people with MS in South Yorkshire and Trent, were crying out a Group they could relate to.

When Sylvia Brown (28) heard about this, she felt she was in a good position to help. "I have had MS now for 7 years and lived through some very desperate and lonely times. Through the internet though I began to receive the support and encouragement I needed to slowly begin to take control of MS. So that was my motivation for setting up the GYMS, to give other young people this point of contact, to let them know that they are not alone and that there is a lot they can do a lot to help themselves!

In fact the whole thrust of the GYMS Group is about Self-Help.

I began by writing a bimonthly newsletter with all the latest news of MS and self-help therapies from the net and sending it out to our Members. Then in February this year we had our first meeting. We kept it informal hiring a room with a bar. It was a bit of a leap into the dark but a roomful of people turned up and the evening went well. We ran a quiz and people had a drink and got chatting.

Since then we have met up in various pubs, and the other month we went out Bowling, which was great fun and totally possible whether or not you were using a wheelchair. If you needed help you could roll and direct the ball down this shoot, which was a revelation to me!Over the Summer we had fun trip out to Alton Towers and are planning a Christmas Dinner and more formal meeting early next year. I think that there is a real need for groups such as GYMS nationally because the needs of the younger person with MS do not seem to be being met.

Out Bowling: Jean really going for a strike!

Part of the problem is, I believe, because our needs are quite specialised. Initial symptoms of MS generally occur between the ages of 20 and 40, and a diagnosis with MS can come as a tremendous shock. It can be difficult enough to simply take this in at this time, never mind any other information, which may or may not be passed on at this time. The message people all to often seem to take away is 'There isn't much you can do to help yourself. Just try to come to terms with this get on with your life as best you can' and that message simply isn't true or at all accurate.

So this is where GYMS can help. By simply putting your name on a list, you can receive a newsletter with information on drugs and therapies, contact numbers and practical advise, as well as many a bad joke! Then it is entirely up to the young person IN THEIR OWN TIME what they want to take from or give to the group. For many the very thought of seeing a person with MS using a wheelchair may still be very frightening so they may not want to come to a meeting straight away. They may simply want to find a pen-pal or be happy just to receive the newsletter. But the point is that the contact and support is there for them, as and when they are ready!

We now have 70 Members on the Newsletter list and the number keeps growing. Although the Group has been set-up for Under 40's, if someone older feels they would benefit from joining us then they are welcome, After all, you are only as old as you feel and many people are diagnosed with MS in their 40's. Our Group is really beginning to gel now as strong-minded young people are getting together, people who aren't prepared to just sit back and give into MS but want to raise awareness, take action and give MS a real run for it's money! We don't know exactly how our group will develop, as that is really is ENTIRELY UP TO US.

We have just one rule and that is simply...

to be positive at all times.

We don't spend all our time talking about MS either. At the end of the day we are young people just like everybody else, yes we all have MS in common but that doesn't define who we are. And through our newsletter and meetings, we keep informed, share ideas and support each other so we are better equipped to face Multiple Sclerosis possibly the greatest challenge of our young lives."

New Pathways magazine-September 2001

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Appraisal of Beta Interferon and Glatiramer for Multiple Sclerosis

Press Release Issued: 07 August 2001

Due to the media speculation surrounding the Institute's appraisal of beta interferon and glatiramer for multiple sclerosis, the Institute has decided to publish the Provisional Appraisal Determination on its website. This is a consultation document only. NICE has NOT issued guidance on the use of beta interferon and glatiramer. The consultation document has been circulated to the consultees (national patient and professional organisations, manufacturers and the Department of Health and National Assembly for Wales) so they can comment on it.

The provisional conclusions of the Appraisal Committee on these medicines is that: · on the balance of their clinical and cost effectiveness neither beta interferon nor glatiramer acetate is recommended for the treatment of Multiple Sclerosis (MS) in the NHS in England and Wales.

* it is likely that patients currently receiving beta interferon or glatiramer acetate for MS would suffer loss of well being if their treatment is discontinued at a time they did not anticipate. Because of this, patients and their consultants may wish to continue therapy until they consider it is appropriate to stop, having regard to the criteria established for withdrawal from treatment in the Guidelines of the Association of British Neurologists published in January 2001.

* the Department of Health and the National Assembly for Wales, and manufacturers, might usefully consider what actions could be taken, jointly, to enable any of the four medicines appraised for this guidance to be secured for patients in the NHS in England and Wales, in a manner which could be considered to be cost effective.

Andrew Dillon, Chief Executive of NICE said, "These provisional conclusions are now the subject of consultation. The Institute considers them to be robust, but it is important that the national patient and professional organisations, manufacturers and the other consultees have the opportunity to comment both on our interpretation of the evidence and our conclusions."

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NICE admits plans to ban beta interferon-Julie Howell.

Government health standards body the National Institute for Clinical Excellence (NICE) has admitted it will recommend that MS drugs beta interferon and glatiramer acetate should not be available to people with MS on the United Kingdom's National Health Service. Many members of Jooly's Joint (www.mswebpals.org) in countries around the world are using these drugs and report huge improvements in their health. There is no drug that can cure MS, but beta interferon and glatiramer acetate are clinically proven to reduce the number of relapses and to slow the progression of MS in some people with some forms of the disease. These drugs are expensive.

However, when quality of life is improved we are able to keep on working, keep on looking after our families, keep making valuable contributions to society. The recommendation from NICE will mean many of us will face a bleak future.

· People with MS are angry because NICE refuses to listen to us.

· People with MS are angry because we have not been properly consulted.

· People with MS are angry because we feel that decisions about our individual health care should be made by ourselves and our doctors, not politicians.

NICE says: "On the balance of their clinical and cost effectiveness neither beta interferon nor glatiramer acetate is recommended for the treatment of Multiple Sclerosis (MS) in the NHS in England and Wales." People with MS do not agree. 90% of UK neurologists do not agree. The MS Society does not agree. People with MS have been very severely let down by the present Labour Government.

The MS Society says: 'How much longer must their agony go on as month by month more people with MS become too disabled to qualify? Surely it is time for Secretary of State Alan Milburn to step in to resolve a situation which has made a shameful mockery of the Government's pledge to end the lottery of care?' "That [NICE] announcement was one of the few that has made me genuinely angry since becoming a Member of Parliament."

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Do you want to help? -Julie Howell-

1. Sign the petition on-line at Joolys Joint www.mswebpals.org

2. Write to Paul Burstow MP: Paul is working closely with the MS Research Trust to raise a number of issues in the House of Commons regarding NICE.

3. Write to the Dept of Health: Write to the Minister responsible for MS services, outlining the reasons why you believe national standards of care are important for people with MS. You should write to John Hutton MP, Minister of State, Dept of Health, Richmond House, 79 Whitehall, London SW1A 2NS, UK.

4. Write to NICE: If you have been assessed as being eligible for beta interferon but have been refused funding by your health authority, you can write directly to NICE outlining your situation. Letters should be sent to: Rod Taylor, Head of Appraisals, NICE, 90 Long Acre, London WC2E 9RZ.

5. Write to your MP: Write to your MP at House of Commons, London SW2A 0AA. Ask him/her to speak to the Health Minister or your behalf. If you don't know who your MP is, try the House of Commons MP Locata.

6. Contact the media: Contact your local press and radio stations.

Keep talking, and take every opportunity to raise awareness of the need for access

to Beta-interferon on the NHS.

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Cannabis & MS

 

 

 

 

 

 

*Canada is the first country to legalise the possession of cannabis for people with chronic illness

*Belgium is the second country (after Holland) to have decriminalised the use of cannabis though not its sale. The government sees no reason why it shouldn't be treated differently to alcohol or tobacco.

* In October the UK's Home Affairs Committee will look at the possibility of decriminalising cannabis. We await the results of current Cannabis Trials with interest! Maybe we too will get it on prescription by 2003!

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Twelve Tips to help prevent Urinary Tract Infections.

A well-known hazard for people with MS are Urinary Tract Infections (UTI's) as they can trigger relapses. Symptoms to look out for are burning and stinging during urination (cystitis) and the persistent urge to go, go, go. Sometimes people with MS however don't pick up on these symptoms as they can't feel the burning sensation and frequently need to go anyway. So it is very important to check your urine daily for cloudiness, smelliness or even traces of blood as these are all signs of infection.

For many of us with MS who experience incontinence it is tempting to try resolve the problem of urgency and frequency by drinking less but PLEASE DON'T!!!. This just makes matters far worse by putting us at a greater risk of developing UTIs.

So what can be done about this? Well firstly the Incontinence issue needs to be handled by a trained Continence Advisor. They are in the best position to offer advise on how to manage such difficulties. So ask your Neurologist to make a Urology appointment for you.

Your Continence Adviser will probably want to scan your bladder to assess whether your bladder is emptying properly. Retention of urine is a common problem for people with MS and this is thought one reason why we are at higher risk of developing UTI's. Imagine a river whose flow is interrupted, it is more likely to stagnate and this is why it is crucial that we keep drinking. Passing urine is our natural defence to bacterial multiplication. Health experts recommend that we drink at least 2 litres (8 glasses) of water a day. So make this Tip.No.1: KEEP DRINKING PLENTY OF FLUID!

Cranberries have also been proven effective in the maintaining Urinary Tract Health. Not only do they help by acidifying the urine, which makes it more difficult for bacteria to multiply, but also actually inhibits bacteria of E. coli cells from sticking to the lining the bladder. A large polymeric compound found only in cranberry and blueberry juices is thought to be responsible for this action. So Tip No2: TAKE CRANBERRY!

If you can't get the Cranberries then why not try Blueberries? Cranberry Juice can be bought in any supermarket. The disadvantage of such drinks is that they often contain lots of fructose and added sugar, which promotes poor colon health and is not good for your health in general. Cranberry juice sweetened with apple juice is available in some supermarkets but it is very pricey. The active ingredient is available in Cranberry Capsules or Tablets (300-1000mgs daily) at the health food store and this is a cheap and effective alternative. Really though there is nothing really better than the real thing! So why not stock up your freezers in the Winter with Fresh Cranberries and then defrost, blend them and then mix them with a fruit juice of your choice for a refreshing and healthy drink which also help keep you infection free?

Bacteria can only grow within a certain pH range. When you get an infection the body will try to acidify the urine itself to stop the bacteria multiplying. This is why it burns to pass water. So another useful recommendation alongside the Cranberry is to try taking 1000 mg of Vitamin C a day, as this too will LOWER THE PH OF YOUR URINE (Tip No.3)

Vitamin C also is also likely to be prescribed for use with a urinary antiseptic drug such as methenamine mandelate (Uroqid-Acid) or methenamine hippurate (Hiprex), as these drugs work best when urine is acidified. You may like to ask your G.P. or Continence nurse about this drug, which can be prescribed as long-term therapy to prevent recurrent or antibiotic-resistant infections.

It is a good idea to AVOID BLADDER POWDERS (Tip No.4), as these take the sting out of water and so neutralise urine, making it easier for bacteria to grow.

Another major cause of bladder infections is by bacteria from the bowels migrating up into the bladder through the urethra. This is particularly a problem for woman because the female urethra is short. So PAY CLOSE ATTENTION TO PERSONAL HYGIENE (Tip No.5). You can never be vigilant enough in this area. Always wipe from front to back to avoid spreading bacteria from the rectum to the vagina or urethra and regularly wash with running water. Also avoid perfumed soaps, feminine hygiene deodorants, and deodorant tampons, coloured toilet paper and bubble baths, which can irritate the urethra. Another handy tip, especially for people who catheterise, a procedure which requires the utmost of cleanliness, is to use baby wipes!

The next Tip is specifically for woman, to EMPTEY THE BLADDER BEFORE AND AFTER SEX (Tip No.6) because during sex bacteria can enter the bladder. In some women infection will result if the bacteria are left overnight. Flushing the bacteria out can reduce your risk. Your Urologist may give you a small dose of antibiotics to take after sex. This can be helpful when other methods fail.

A SMALL OR PROPHYLACTIC DOSE OF ANTIBIOTICS (Tip No.7) is sometimes used as a urinary antiseptic as a preventative measure against infection. It is excreted in the urine and can significantly reduce the risk of infection. This is another one for discussion with your Urologist! Some people express concern that bacteria will simply become antibiotic-resistant if the anti-biotics are used over long periods but other people say that such low a dose doesn't pose any problem.

Personally I now choose to use natural alternatives such as Cranberry, Aloe Vera Juice, and Citricidal (Grapefruit Seed Extract), a natural antiparasitic, and Garlic (raw or the odourless capsules), nature's antibiotic, which has the added benefit of BOOSTING YOUR IMMUNE SYSTEM (Tip No.8). The best way to do this is to take eat a healthy diet with lots of fruit and vegetables, exercise regularly, take vitamin supplements and where possible avoid stress and get enough restful sleep.

It is also important to AVOID CONSTIPATION (Tip No.9). When you are constipated the number of bacteria deposited around the area between the anus and vagina increases. So increase your fibre intake. Try eating a spoonful of seeds sesame with every meal alongside plenty of our trusty fruit and vegetables. There are also many herbal laxatives and over the Counter Preparations like Epsom Salts & Fybogel which relief constipation.

Also another helpful hint for ladies is to AVOID SPERMICIDES (Tip No.10), as they alter kill off friendly bacteria in the vagina, allowing pathogenic bacteria to grow and cause infection. Many condoms have spermicide in their lubricant so it is preferable to use ones without.

Ladies also need to MAINTAIN GOOD VAGINAL HEALTH (Tip.No.11) as if there is significant vaginal dryness you are at higher risk of UTI's. Oestrogens reduce the risk of infection by promoting a friendly environment for the good bacteria to thrive and warm of infections. The most common reason for a low oestrogen is menopause, and many women begin to develop recurrent infections around this time. Hormone replacement has been shown to be an effective treatment for this problem.

It is a good idea to TAKE ACIDOPHILUS (PROBIOTICS) (Tip No.12) after such a course, as the antibiotics not only kill the bacteria which are causing the infection, but also kill off the good bacteria, which protect the body from further infections. It is therefore advisable to replenish the gut flora to re-dress this balance.

Recent Research has shown that anti-biotics may not always solve the problem of recurrent UTI's. According to researchers from the University of North Carolina at Charlotte bacteria may be able to survive antibiotic treatment for bladder infections by reverting to a dormant state. In fact Bladder infections caused by E. coli, a common bacterium, has been shown to recur in as many as 30% of women apparently cured by antibiotics.

UTI's are still my greatest stumbling block and I have learnt the hard way that the FREQUENT USE OF ANTI-BIOTICS is best avoided when living with MS. They create Candida (or yeast overgrowth), weaken your body's defence against further infection, and throw your body out of balance, so increasing the risk of MS relapse. Prevention as they say is better than a cure and though there is no easy answer to this problem, awareness is the key and these Tips should help where possible to maintain good Urinary Tract Health.

Written by: Sylvia Brown (Editor).

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Diet and MS:

Why are MS Researchers are still denying us this basic Research?

We asked University Profs & Dr's their opinions to try to throw some light on this matter and got some revealing answers.

After decades of searching for a single cause and cure for the disease, scientists have recently discovered that MS cases can be divided into four broad categories. So who know how many actual conditions really lie under the umbrella of what we call MS and how many different underlying causes there may be.

Most scientists agree that there is a genetic predisposition to the condition, and other widely recognised environmental factors associated with include stress, trauma, infection and recently the link to lack of Sunshine (i.e. low levels of Vitamin D) has been recognised in scientific journals.

Diet, another important factor, however is still being widely ignored. Yet when you actually study the epidemiology of MS you discover that the only environmental factors which correlates and explains the prevalence of MS in various parts of the world alongside Sunshine, is DIET. In high prevalence areas the diet is generally high in dairy, cereal, grain and saturated fat content. In places where the consumption of dairy, cereal grain, and saturated fat is low, and the intake of fish is high (containing Omega 3 EFAs) the prevalence of MS is low.

There is also an overwhelming amount of supportive anecdotal evidence to back the MS-Diet link from people with MS like myself, living their lives, making changes to their diet and getting results, stabilising, gradually improving or even recovering from MS. The new UK internet based Best Bet Diet Group (www.ms-diet.org) already has over ~100 Members world-wide and we are getting results!

Added to this Ashton Embry's scientific theory (www.direct-ms.com), as to how Diet may affect the onset and progression of MS is highly plausible. From Ashton's work has sprung the charity Direct MS (Dietary REsearch into the Cause and Treatment of Multiple Sclerosis), set-up in Canada by people with MS and their families, determined to raise the money for properly conducted Research Trials.

So far they have raised $100,000 towards their target of $175 000 and it is an uphill struggle. So plausible is Ashton's theory that Dr. Peter Serland, Head of Research for MS Society in Canada has had to admit that he cannot assure people with MS, that foods such as such foods as dairy, gluten and yeast are safe to eat. Imagine if a city official suddenly announced that he could not guarantee the safety of your tap water. Everybody would be demanding that the city determine beyond a doubt if the water was safe or not and in the shortest possible time.

Many University Academics agree. "There is no doubt that clinical trials with diet are needed" states Prof. Christine Williams. "there is sufficient indication that diet could be an effective modulator for this disease that affects many young people." Prof. Bill Hardcastle states " We are establishing in the Faculty of Health Sciences here at Queen Margaret University College, a Centre of Complementary Medicine and we have number of high profile people very interested in this initiative"

Dr. Peter McCaffery adds "MS is disproportionately prevalent in Northeast Scotland, and diet was the suggested explanation offered a lady I used to know whose husband suffered from it". Dr Carsten Timmermann also offers support "I think that personal experience with things like diet is often just as valid as, if not more than what you may want to call systematic science". But sadly such anecdotal evidence though valid is meaningless in the real world of science.

Prof. D. A. Ledward enlarges on this problem. "We all of course accept that diet plays a crucial role in many illnesses but unfortunately trials to confirm most of these relationship because of our biochemical individuality, make them very expensive to prove to any degree of acceptable significance".

However, though difficult, it is possible to reduce the number of variables and produce valid scientific results, it is just very expensive and herein lies the real problem. In order to secure funding a researcher have to submit a proposal in this area. As there is very little money to be made from proving that people can make themselves better through simple supplemented dietary change, it is almost impossible to find sponsors willing to fund such a venture.

Prof. Christine Williams gives her honest view on this matter "the real reason that such studies are not done is that they lack the high tech glamour and required impact on 'wealth creation".

Prof. Charles Warlow adds "I'm afraid the power of the drug companies has distracted many MS researchers away from diet, and other non-drug issues." He clarifies the situation further. "There is a general problem with the evaluation of non-drug treatments for many disorders, and MS is no exception. It is much easier for a researcher to do a drug company sponsored drug trial than raise funds to do a serious trial of dietary interventions. This is not to blame industry. They are doing what they have to do in a competitive market. The problem lies with government which is not prepared to redress the balance and fund research into interventions of no commercial interest."

Maybe we could accept this if all the money drugs companies ploughed into long term laboratory research studies on such subjects as genetics, molecular biology and immunology, were producing results that actually helped people with MS. But the irony is, as Prof. Williams rightly points out, "after all the the money put into developing beta- Interferon it cannot now be prescribed for most MS sufferers because it is too expensive and only effective in small numbers of people. Better perhaps to fund diet trials, which could result in cost effective treatment for more people?" I'm afraid I must also agree with Prof. Warlow when he adds "patients themselves, and our MS society, have become obsessed with beta interferon, even though any effect is marginal at best."

That is why it is our responsibility to raise awareness not only among ourselves, but we must also tell the government by writing to our MP's, people who have money and can pull strings and make things happen.

We must suggest Diet as a realistic alternative and even a possible solution to their current dilemma with Beta-interferon and highlight the urgent need to secure funding the Diet Research Trials.

We must also lobby our MS Society as they too have the resources to fund such Research and the power to raise awareness and change lives. Isn't it about time that doctors will at last be able to provide peoples with MS with reliable information on that frequently asked question "Does diet play a role in MS?". The current answer provided by our Society and Neurologists of "We do not know" clearly is not adequate.

I am not suggesting that Diet is the whole answer but it is an important part of the jigsaw puzzle of MS that needs to be fitted to help us gain a clearer picture and prevent more people than necessary falling victim to MS, through lack of Awareness. For further info on the 'Best Bet Diet' Publicity Campaign please contact: Sylvia Brown (Email: sylvia.m.brown@btinternet.com) or phone 01506 491441.

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Professor Christine Williams, Nutrition Unit, University of Reading,

Professor William Hardcastle, Dean of the Faculty of Health Sciences- Queen Margaret University College London

Dr. Peter McCaffery, Cultural History Group, University of Aberdeen,

Dr Carsten Timmermann, Wellcome Research Fellow, Centre for the History of Science, Technology & Medicine, University of Manchester,

Professor D.A. Ledward, Head of the Dept. of Food & Science Technology, University of Reading,

Professor Charles Warlow, Dept. of Clinical Neurosciences at Western General Hospital, University of Edinburgh.

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Under 35's MS Society Conference -15/09/01-

I attended the Under 35's conference at the NEC in Birmingham. We heard presentations about 'What is MS?', 'Research Updates', 'MS & Relationships', 'MS & Work' and 'Campaigning'. We had opportunity to ask each speaker questions during and also at the end of each session.

The highlight of the day for me was the session 'Living Your Life', involving a panel of four Young People. Particularly impressive were Mike Taylor and Camilla Veale. Mike runs his own Graphic Design business. He uses a wheelchair but that doesn't stop him at all, he is a keen swimmer, who recently swam to channel to raise money for MS. People were amazed by this and asked him how he could do this despite MS and his disability, and he laughed and said 'well, I just swim and my legs tend to follow!' When asked about things that help him live with MS he too stressed the importance of Diet. Since he sorted out his diet his MS has not got worse.

Camilla was equally motivating. She is completely open about being a lesbian, she works full-time and is a keen sailor & MS Society fundraiser. Her positive attitudes and zest for life were a great inspiration to many young people there. This session (which was only allocated 20 minutes) overran as people wanted to know more, ask the panel questions, and relate their attitude and experiences to their own lives.

Above all what came across throughout the day was young people's desire to get in touch, meet other people with MS in similar situations, people to talk and relate to. Unfortunately we didn't get much chance to do this due to the day's full agenda. Next time I hope that there would be opportunity for splitting into smaller groups or even regional ones for meeting and discussion. Though they still have a way to go, I think this Conference was a step in the right direction, showing a willingness to take on board our what we want, the next step will be putting in the work to ensure they meet these needs.

Editor

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New Pathways If you have MS this magazine is a must, packed full of positive and encouraging information to help you live with MS. Don't miss out! Subscription is a payment of £10 (+any donation) made payable to 'MSRC': The MSRC, 7 Peartree Business Centre, Peartree Road, Stanway, Colchester, Essex, CO3 5JN. Email: themsrc@yahoo.com Website: www.msrc.co.uk

 

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Fair Price Mobility Top Quality 3 & 4 Wheel Scooters Just £1 595 £100 donated to GYMS with every scooter sale! Call Steve on: 0114 262 0544 Webpage: www.fairprice-mobility-scooters.co.uk Email: fairprice.mobility@btinternet.com

 

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MS Society Web-site: www.mssociety.org.uk MS Helpline: 0808 800 8000 (Mon - Fri 9am-9pm.) MS Counselling Lines: Midlands 0121 4764229 (Confidential Service) Address: 372, Edgeware Road, London, NW2 6ND, Phone: 020 8438 0700 Fax: 020 8438 0701 Email: info@mssociety.org.uk

 

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I am writing a booklet for the newly diagnosed and would appreciate your input. I want to know how you felt when you were diagnosed and what information would have been helpful to you? What important topics do you think should be covered? How can this booklet best help newly diagnosed come to terms with MS, without overwhelming them? What did you want to know? All feedback is greatly appreciated so either call me on 0114 271 2302 or have a word whenever you see me, at the next meeting or out on visits.

Thanks Adrienne Cox- MS Nurse

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