Londonderry MS Society puts condition on the map

The local campaigner believes the ‘Putting Multiple Sclerosis on the Map for MS Week (May 23-29)’ drive will result in a brilliant new resource for anyone researching the condition and will ultimately result in better living conditions for those living with MS.

During MS week, the MS Society wants to join forces with the 100,000 people living with the condition in order to “get loud about MS.”

Those living with MS, doctors, nurses, friends, family are invited to tell their stories in order to populate a new UK-wide MS Map.

The MS Society invites them to upload videos telling society why they think it’s important to put MS on the Map.

They can do so by visiting www.mapms.org.uk/video-upload and use the easy upload form to submit their videos.

After checking to make sure it’s family viewing, the MS Society will put the video on its map page, and on its MapMS YouTube channel.

Terry reckons it’s a great idea and has been at the forefront of gathering stories in Londonderry.

Seventeen people told their stories during a pioneering promotion in Foyleside Shopping Centre recently and will soon appear on the website and on the MS Society channel.

“We had a booth in Foyleside last Friday and we spent the whole day allowing people to tell their stories,” he explained. “Not just people living with MS, but medical workers, family members. We had a woman with MS and her sister came in and they both told their stories.”

He added: “I think it is an absolutely brilliant way of getting more information. It’s really the first time any organisation like ours has engaged so extensively with the medical profession and it is going to be great resource giving us more information about MS.”

The stories are set to go live on the online MS Map imminently alongside those of high profile celebrities like athlete Sally Gunnell and popstar Ortisé Williams as well as family members, friends, colleagues, doctors, neurologists, nurses, volunteers and supporters.

Londonderry’s ‘Map MS’ roadshow was the first of nine to take place across Northern Ireland. Throughout May, the society will continue the story-finding drive around the UK with an accessible video booth.

It is hoped the campaign will build a better picture of MS for people living with the condition as well as medical workers and researchers.

This year there have been a number of important developments that have improved our understanding of MS.

For example, the results from the biggest study yet into Chronic cerebrospinal venous insufficiency (CCSVI) - a syndrome characterised by poor removal of oxygen-depleted blood from the central nervous system and thought to be caused by a constriction of blood vessels in the brain and neck which affects brain blood flow and drainage - suggest it does not cause MS, but may be a result of the condition.

Scientists at the University of Buffalo tested 499 people for CCSVI. 289 had MS, 163 were ‘healthy controls’ (no MS), 26 had other neurological conditions and 21 had clinically isolated syndrome (CIS).

The results, published in the academic journal ‘Neurology’ this week, found signs of CCSVI in: 56 per cent of people with MS; 22 per cent of ‘healthy controls;’ 42 per cent of those with other conditions; 38 per cent of people with CIS.

According to lead researcher Dr Robert Zivadinov: “While this may suggest an association between the MS and CCSVI, association does not imply causality.”

The study was ‘blinded’, meaning those doing the tests did not know who had MS and who did not, so there was no chance that they could influence results in any way.

There are currently seven other studies underway investigating the association between MS and CCSVI.

And in another development the first pill for relapsing remitting MS was licensed.

Fingolimod (brand name Gilenya) was recently licensed by UK regulators for people with highly active relapsing-remitting MS.

The new treatment, the first pill for MS, increases choice and bridges the gap for people who have not found beta interferons to work, but who are not yet eligible to take Tysabri.

In clinicial trials, the treatment has reduced the number of relapses people with MS experience by 54 per cent – 60 per cent over a two year period.

The decision by the Government’s medicines agency, the MHRA, to licence the treatment means neurologists can prescribe it from this week. However, access is likely to be patchy until the National Institute for Clinical Excellence (NICE) reviews the cost-effectiveness of the treatment and decides whether or not it should be routinely available on the NHS in England, Wales & Northern Ireland. Scotland has its own perscribing committee, but their decision is likely to be influenced by NICE. Providing there are no delays, the review should be complete by July.

Dr Doug Brown, Head of Biomedical Research at the MS Society, said: “The licensing of the first pill for MS is great news for people with the condition. There are only a handful of licensed drugs available to treat debilitating MS relapses and they’re all taken by injection or infusion – so the availability of a daily pill comes as welcome relief for many and will increase patient choice.

This treatment fills the gap for people who have failed on first line treatments but are not eligible for infusion therapy and we look forward to seeing it made available to all those who could benefit from taking it.”

In order to increase the likelihood of further developments such as these the MS Society is inviting people to add to the online archive of information and upload at: www.mapms.org.uk and put MS on the map for MS Week, May 23-29.