March, April and May 2002

MS Drugs Now Available to All
A radical new scheme to make MS drugs available to all people whose neurologists believe they can benefit was announced in February. This will include people with Relapsing-Remitting and Secondary Progressive MS. To date the drugs “beta interferon” and “glatiramer acetate” are the only drugs that have been found to affect the progress of MS and it is these that will now become available on the National Health Service. Under the scheme the price of a drug to the NHS will be reduced if patients benefit less than targets agreed with the manufacturer.

The scheme builds on a proposal originally devised by the MS Society and without the resolute campaigning of people with MS, including those who signed a massive petition recently handed in to the Scottish Parliament it is unlikely that such a breakthrough would have been made. Congratulations to everyone who supported the campaign.

A special information line for individual enquiries about the scheme has been set up by the MS Society. Call 020 8438 0862

Axon Damage
MS is usually associated with the demyelination of nerves but axonal (nerve fibre) degeneration is also significant. The significance of axonal damage is that it causes permanent disability in MS. Only new technologies have allowed deeper studies of the axon which have brought closer the possibilities of prevention and cure. One of the issues is whether axonal injury is a result of inflammation. The main message appears to be that, in order to avoid acute inflammatory damage to axons, people with MS should be treated with anti-inflammatory drugs at the earliest possible stage.

New Trials
Much has been in the news about drugs to help people with relapsing remitting MS (and now secondary progressive) but until recently there has been little in the way of investigations into drugs that will help people with primary progressive MS (PPMS). Trials are currently taking place to investigate the effect of “glatiramer acetate” on people with PPMS. Preliminary tests have suggested a slowing down in the rate of progression. Now the drug is to be given to 900 people with PPMS in the UK, US and France. Initial results are not expected for about three years.

Of Mice and Men
Researchers believe it may be possible to stop and perhaps reverse the process of MS by targeting key chemical signals in the immune system. They have found that inactivating chemical signals called “chemokines” can stop damage to myelin, the protective layer around nerves in the brain and spinal cord. This intervention helped to slow demyelination in mice and even appeared to allow myelin to be repaired. When treatment stopped however, the mice showed signs of worsening disease.

Interfering with chemokines is very risky since these molecules are also necessary for the immune system to function normally and fight infection so, while the research shows promise, there is a long way to go before it is known whether there is any prospect of using this approach as a treatment for people with MS.

In a different study, a common antibiotic “minocycline” – a member of the “tetracycline” family – was tested on rats with a condition that mimics MS. Tetracycline is one of the older antibiotics and doctors have been studying its effects on MS for a number of years. Tests suggest that the drug may significantly decrease the severity of MS attacks or even block the onset of relapses. Results of the trials have been so encouraging that human trials are to start later this year.
Remyelination
Neurosurgeons at Yale School of Medicine recently transplanted myelin forming nerve cells into the brain of a woman with MS. The surgery was a safety trial as part of a long term study to ascertain whether myelin from Schwann cells in the peripheral nervous system, in this case a nerve in the patients ankle, could be grafted onto the central nervous system. It is hoped the experimental surgery will repair some of the damage caused by MS.

Speech and Swallowing
At the beginning of January we were very fortunate to have Claire Laing, a Speech Therapist from Horizons, give a most interesting and informative talk at the SRC. Claire talked about the different types of difficulty and the different patterns of symptoms associated with speech and swallowing in people with MS.

“Dysarthia” was a word which she mentioned often which means disorder of speech. A recent study showed that just less than 50% of people with MS suffer dysarthia, albeit to varying degrees. She also discussed “dysphagia” which means disorder of swallowing and many useful hints were given to overcome these common but annoying and sometimes frightening difficulties.

A speech assessment is available at Horizons along with an appropriate treatment programme. A “videofluoroscopy” can also be arranged for those who need one which is a x-ray of the swallowing process to pinpoint any abnormalities. To access Horizons people would first have to contact their G.P.

A tape of Claire’s talk is available from the S.R.C. If you’d like to hear it, just give us a call on 692777.

MS and Your Home
At the end of January the Stuart Resource Centre was also the venue for a most stimulating talk and discussion given by Mary Stobie, Occupational Therapist from the Housing Department and Susan Park, Welfare Officer with the Aberdeen Branch of the MS Society.

Mary talked about various adaptations and equipment that is available to enable people to remain as independent as possible at home. She talked about the structure and referral procedures within the O.T. department and mentioned the various financial grants available to individuals for house adaptations and/or appliances.

Susan discussed the possibility of the MS Society contributing a proportion of a grant application forwarded by a person with MS. Applications should preferably be backed by an O.T. or G.P. Realistically, because the MS Society has limited cash, applications for financial help should be a last resort.

MS Society Grant forms are available at the Centre. We also have a tape of the above talk available on loan. Tel. 692777 for further information.

MS Nurse
Hello. I’m really pleased to be working as the ‘new’ MS Specialist Nurse, based on Ward 40 at Aberdeen Royal Infirmary.

I took up post in October and having hit the ground running, so to speak, I look back on the past 4 months as a time of immense challenge and diversity.

This certainly is a very exciting time to be an MS Specialist Nurse!

The role of the MS Specialist Nurse is both diverse and complex; and I’m hopeful that my contribution will make a positive difference to the lives of people living with the consequences of MS.

So what does an MS Specialist Nurse actually do? Or rather, what do I as an MS Specialist nurse based in Aberdeen hope to achieve?

Basically my plan is to concentrate mainly on areas where I can make the most difference.

Primarily my role is to support people newly diagnosed with MS, and in this area there are many issues that require urgent attention. Please do write to me if you would like to share any ideas or experiences that you feel would be of benefit to others. I would love to hear from you.

Not surprisingly, the issues surrounding Beta Interferon therapy currently carry a significant workload. In this respect I’m very fortunate to enjoy a good working relationship with my colleague Catriona Ewen. Although Catriona only works part time, she certainly carries a very full caseload supporting those on Beta Interferon. We are working closely together to co-ordinate our efforts to streamline and hopefully reduce the significant amount of time currently spent on administration.

One aspect that I hope to develop further is to facilitate and enable others to be more effective in caring for people with MS. This may not be immediately noticeable but will hopefully show long-term benefits rather than short-term gains.

Of course there are many other aspects of my role and I’m sure that in due course I will come into contact with many of you in one way or another.

Zandra Taylor, MS Specialist Nurse.

The Genetic Factor
Various family studies on the incidence of MS suggest that the condition is caused by complex interactions between genetic and environmental factors. MS is not inherited in the same way as a genetic condition like cystic fibrosis or haemophilia however, members of a family of a person with MS do have a slightly higher risk of developing MS when compared with the general population. It appears that the genes influence how susceptible a person is to getting MS.

In a recent study researchers in the UK looked at 262 pairs of brothers and/or sisters with MS with the aim of finding out whether genes influence the way MS develops. They looked at several factors including the course of the disease, clinical symptoms, age and year of onset and levels of disability.

They found that while siblings’ first symptoms often differed, their disease often followed a similar course and caused similar levels of disability. Fifty percent of sibling pairs had an identical progression of the disease. There was also a significant similarity in the extent and severity of the disease.

This study is important because it suggests that genes not only affect a person’s susceptibility to MS, but can also influence how the disease progresses. Finding these genes may help us to understand some of the mechanisms involved.

Depression in MS
A major aspect for many people with MS is the unpredictability of their condition. A study has been performed to test whether the uncertainty is a cause of depression rather than the symptoms of MS itself.

166 people were involved in the study, with either relapsing remitting or secondary progressive MS. They were assessed for their level of disability and asked about their medical history, their current symptoms and how they cope with life with MS.

The study showed that the uncertainty of MS was the key factor in causing depression and that worsening of MS symptoms increased people’s feelings of uncertainty. The study concluded that health professionals need to be more aware of the importance of recognising periods of increased uncertainty in their patients and need to provide more support at this time.

Nasal Spray for Improved Sex
A nasal spray that can boost sexual performance is being developed by researchers in the US. Scientists say one whiff of the spray called PT-141 could help improve the sex lives of both men and women.

Unlike Viagra, this spray acts on the brain rather than the sexual organs. The drug is a chemical copy of a naturally occurring hormone “melanocyte-stimulating hormone” which plays a role in stimulating sexual function and appetite. It takes effect within several minutes of use, activating the release of melanocyte-stimulating hormone, as well as other sex hormones. Researchers say the drug triggers the brains sexual centre where nature would normally start sexual behaviour.

This may provide the first effective treatment for women who suffer from a low libido. Currently, the only drug that can increase a woman’s sex drive is Wellbutrin, which is primarly an antidepressant- a side effect is improved sex drive. Other drugs that act on the brains sexual centre have side effects of nausea and vomiting. In the studies performed so far with PT-141, there appears to be none of these unwanted outcomes.

Full clinical trials are due to begin on men and women to further test the spray.

Support Group
We’re starting a group at the SRC to give support to people with MS in areas that are causing them concern e.g. MS symptoms, psychological problems, mobility concerns, workplace difficulties – the list could be endless. Not everyone wants or needs the kind of support a group gives and being a support group member can be a challenging experience but for those who “sign up” the benefits of belonging to such a group can be enormous.

Members of the group, between eight and twelve people, will meet once a fortnight to give each other confidential support. It takes time to build up trust so it is felt that the group should initially run for six months to enable people to feel at ease with one another.

The group could run in the day time or in the evening (perhaps there could be two groups?) and would have a facilitator present at least for the first few sessions – after that the group themselves would decide how to continue.

If you would like to know more please contact a member of staff at the SRC.

New Website
The Multiple Sclerosis Society have launched a new website for people who have MS, their carers, health and social care professionals, volunteers and supporters, and others who want to know about MS.

www.mssociety.org.uk has been completely re-designed to provide much more information and to make access very simple. Features are built in to help people with vision and dexterity problems. Large on-screen buttons lead quickly to the information the visitor wants to see. Presentation is clear and colourful.

Content includes information about MS and living with the condition, progress in research, specialist information for care professionals, and MS Society services, campaigns and events. The site is regularly up-dated with news. Interactive features encourage user involvement, including information sharing, joining campaigns and volunteering for clinical trials Chat rooms are planned. There are links to other useful sites.

News in Brief
New Head
Mike O’Donovan has been appointed Chief Executive of the Multiple Sclerosis Society of Great Britain. Mike moves to the Society in April from GlaxoSmithKline where he is currently Vice President of Strategic Management and Planning for Consumer Healthcare.

We wish him every success in his new post.
New MS Nurse in Place
The MS Society has agreed a grant to fund a specialist MS nurse for the Highland Acute Hospitals National Health Service Trust. This brings the current total of MS specialist nurses in Scotland up to nine. Not yet nearly enough but a big improvement on two years ago.
New Books and Tapes
We have a very interesting new book at the Centre “Mind over Mood” – Change how you feel by changing the way you think.

We also have a great new video tape from the Yoga for Health Foundation “Step by Step” – Yoga for those with Multiple Sclerosis.

If you’d like to borrow either of these new resources, please give us a call. Tel. 692777.

Walking Week in Ballater
Two rambles suitable for disabled people in wheelchairs or buggies have been identified by people in Ballater working in conjunction with Scottish Disabled Ramblers. One starts from the car park at Loch Muick and another meanders through the lovely tracks at Invercauld Estate.

As part of a Walking Festival, Walking Week between 25th and 31st May, people with disabilities have been invited by the people involved in Ballater to join them on an escorted tour where someone will introduce them to the countryside, tell them about local legends, etc.

If you’d be interested in getting out and about in our beautiful countryside, please contact staff at the SRC. It may be possible for one or even two buses from the Centre to make an outing at dates and times to be arranged.

MS Awareness Week — 15th – 21st April
Watch out for MS making the news at this time. There are often some great interviews and articles on radio, television and in the papers. MS Awareness Week helps to bring MS to the forefront and people get an insight into the condition that they might never otherwise have had. And with knowledge comes understanding.

It’s also a good time to help raise funds for research into MS and for all the other activities that go on to help people with MS.

One idea that’s been running for some years is the “Cake Break” where people from all over organise coffee mornings at their place of work or among their friends, offer some scrumptious home bakes and charge £1.00 per person for the privilege. The money raised goes towards generating funds for the MS Society. It’s fun. Why not give it a try?

Dial up with Gas
British Gas has gone into the phone business and have introduced a new home and mobile phone package called YourChoice 500. It offers good deals on calls and costs £12.99 a month. For more information call 0800 316 3335.

BT Answer
1571 (the telephone answering service) is now FREE. Register with BT by calling 0800 003 800.