Hi Folks,

Hope you all had a great Xmas and a Happy New Year!

Adrienne and I have been having a re-think about GYMS and where we are heading. What we really need this year is more feedback as to what you want from GYMS, and help to get it all happening. We realise that most of our meetings have been based in Sheffield, mainly because I know Sheffield. So please let me know where you would like to meet in your area! Anybody know of any good accessible curry houses?

Many thanks to Westfield Health for their generous donation of £300 to GYMS, specifically to buy a library of MS self-help books and videos. There are so many inspiring books out there!. We do not have to sit back and be victims!!! If you have any specific MS books you wish me to purchase then just let me know. At the end of the day knowledge is power and though we don't have a choice about having MS we do have a choice in how we manage and live with it!

Hope to see you all at our next meeting at the end of the month! We're off Bowling again!

Editor (Sylvie)

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The MS Trust is here to help you!

· The MS Trust is working to ensure MS nurses become
widely available to all people diagnosed with MS.

• The MS Trust has an ongoing commitment to research.
• The MS Trust are a major provider of education
  programmes for nurses, health and social care workers
• The MS Trust also produce a wide range of
  publications on MS available to anyone who needs
  them!

Such articles include:

• MS: What does it mean for me? -Aimed at the newly diagnosed-
• Making a difference -Tips for living with MS- compiled by people with MS-.
• Newsletter- every quarter-.
• Living with Spasticity
• 'My Mum's Got MS' & 'My Dad's got MS'- written for young children-.
  (highly recommended !)

To receive any of the above for free, give them a call on 01462 476700. (a donation to cover postage is appreciated).

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New Scheme to fund UK MS Drugs

The National Institute of Clinical Excellence (NICE) have made their final decision, that Betainterferon and Copaxone (glatiramer acetate) are not to be made available on the NHS to people with MS who are not already getting them. NICE argued that neither drug had been proven to bring enough benefit to enough people.

However an extended clinical trials to study the effectiveness of these drugs in treating MS have been proposed by the government.Under the scheme, up to 10,000 patients who meet the clinical criteria for therapy would be prescribed the treatment and monitored over a number of years.The Department of Health wants to establish just how many MS patients would benefit from using these drugs.

Its own advisory body has warned that both treatments are not currently cost-effective, and should only be made widely available if a new way to improve value for money is found.
The scheme will go ahead if the Department of Health can negotiate a deal to share the financial risk between the government and the drug companies.

Chief executive of the MS Society, Peter Cardy, welcomed the proposed trials saying: "We know this drug does not work for everybody, and that its benefits are limited. But if this trial takes place, then we should at the end of it know much more about who exactly the drug works for, and what its benefits are."

If you are interested in taking part in this trial your neurologist is probably the best person to speak to!

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Website of the month

Are you living with Multiple Sclerosis?
Would you like to meet new friends with MS?
Welcome to Jooly's Joint, a place can meet and chat with
MSers from all around the world!

www.mswebpals.org

Yell UK Web Awards 2000 Winner
New Statesman-award 2000

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Don't get stressed. It's not worth it!!

Acute stress increases the permeability of the blood-brain barrier through activation of brain mast cells.

Disruption of the blood-brain barrier is important in the development of various inflammatory conditions of the central nervous system such as multiple sclerosis (MS) in which breakdown of the barrier precedes any clinical findings.

There is some evidence that relapsing-remitting MS attacks may be correlated with certain types of acute stressful episodes. Stress typically activates the brain through the release of a corticotropin-releasing hormone.

However, acute stress also has inflammatory effects that appear to be mediated through the activation of mast cells. Many MS patients have correlated their exacerbations with major stressful events such as divorce, car accidents or major illnesses or deaths in a family preceding months to their attack.

Source: MS Highlights, Issue 2, Vol.4-2001

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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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Canadian Dietary Research Trials soon to be underway!

MS DIRECT

Canadian Scientist Ashton Embry PhD has succeeded in raising the
$250 000 needed to carry out vital Research in the field of Diet &
MS. $100 000 has been given by the Canadian MS Society and a
donation of $31 250 has also been made by an anonymous donor
in the US. This research is long over due.

For more info & plenty of food for thought visit:

www.direct-ms.org

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New Pathways for all!

If you have MS this bimonthly magazine is a must, packed full of
positive and encouraging info. to help you live with MS.

To subscribe (for a year) send a cheque for £10 (payable to
'MSRC') to: The MSRC, 7 Peartree Business Centre, Peartree
Road, Stanway, Colchester, Essex, CO3 5JN.
Email: themsrc@yahoo.com
Website: www.msrc.co.uk
Tel. 0800 783 0518.

To view New Pathways online visit:
www.msrc.co.uk/frameset.htm

The Multiple Sclerosis Resource Centre will send 'New Pathways' free to those who genuinely can't afford the subscription.

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MS 24 Hour Telephone Counselling Service

The Multiple Sclerosis Resource Centre (MSRC) are now running the MS Counselling Service.

So if you are struggling and could do with some help and advise from fellow MSers
call them anytime on

Tel. 020 8422 2144

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Flu vaccination looks ok for people with MS says Doctors

Vaccinations do not appear to increase the short term risk of causing relapses in MS. These are the findings of two major studies prompted by concerns that vaccination might lead to relapses.

The first study was for the International Multi-Centre Vaccines in Multiple Sclerosis (VACCIMUS) and the results showed no increase in specific risk of relapse linked with tetanus, hepatitis B or influenza vaccination. The second case controlled study of two large cohorts of nurses in the United States was done by Harvard University school of public health and followed 116,671 women since 1989.

Source: PSL Consulting , 2000.

NB: For me the flu vaccine does make me feel ill, so I have to weigh up which is worst for me. Feeling under the weather for 10 days or risking getting the flu! The jury is still out on this one.
What do you think?

Editor

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Vit D Shows Positive Effects in Blood Chemistry of people with MS

In a small study at Penn State & Helen Hayes Hospital in New York, the effect of a daily dose of 1000 IU of vitamin D on the blood chemistry of MS patients was examined. After 6 months of supplementation and results showed an increase in beta-1 a chemical that helps to suppress autoimmune reactions (TGF) and decreases one that promotes autoimmune reactions (Interleukin-2). Vitamin D has also has a well documented immunosuppressive effects in animal models of MS.

This new research suggests that vitamin D-3 supplements may have positive effects on MS. Only a relatively small dose of Vit D3 was used in this study, and more research is needed to establish whether the higher dose of 4000IU daily shows an even more positive effects in normalising immune function (though it will do you know harm*).
These results could explain why the prevalence of MS generally increases the further you move away from the equator. Vitamin D is produced in the skin when it is exposed to sunlight and exposure to sunlight diminishes with latitude. Added to this fact in Norway the incidence of MS is far less in the coastal regions where large quantities of fish are consumed, a food rich in vitamin D. MS lesion activity has also been shown to correlate with the seasonal fluctuation of vitamin D in the body*.
It is worth noting that many of the Vitamin D sold in corner drug stores is the D2 variety and this is not thought to be effective in slowing MS symptoms. Also the tablets are generally only 400IU.

However 1000IU Vit D3 tablets are available cheaply through FreedaVitamins

@ www.freedavitamins.com

http://unisci.com/stories/20012/0409013.htm

*A.F Embry PhD, L.R. Snowdon PhD, Reinhold Vieth PhD, Annals of Neurology, 2000, v.48, Pg 272-272

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THERAPY FOUND TO RELIEVE FATIGUE OF

MULTIPLE SCLEROSIS PATIENTS

COLUMBUS, Ohio - For the first time, researchers here have found an effective therapy that can alleviate the fatigue often accompanying multiple sclerosis. Fatigue is one of the most common and disabling symptoms of multiple sclerosis. It affects 75 to 90 percent of patients with the disease.

Two doses of modafinil (200 and 400 mg) were compared against a placebo in 72 patients with multiple sclerosis ranging in age from 18 to 65. It was observed that the 200 mg dose of the drug administered once daily showed highly significant improvement in patients.

"We were very pleased to find that a medication that was effective" said Rammohan, lead author of the study. Rammohan's group also looked at the potential side effects associated with this medication and found that they were not greater than those experienced by patients in the study who received a placebo.

No previous drug has been able to show this degree of improvement in treating multiple sclerosis-related fatigue in any previous clinical trial.

http://www.osu.edu/researchnews/archive/rammohan.htm

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