Foyle Branch News & Research 2007
- Fined for Speeding in a Wheelchair (Posted: 15/12/2007)
- From Inkjet Technology to Painless Injection via an Irish Company??? (Posted: 14/12/2007)
- Riveting Video Interviews with Young Persons Diagnosed with MS & their Parents (Posted: 07/12/2007)
- Marathon Running with MS at Age 59 (Posted: 4/12/2007)
- Evidence of Epstein-Barr Virus in Multiple Sclerosis Brain Tissues (Posted: 4/12/2007)
- Important change to disability act- MS now covered from diagnosis (Posted: 22/11/2007)
- Interesting PatientsLikeME site collects details from large number of persons with MS (Posted: 13/09/2007)
- Governance? Workshop (Posted: 26/07/2007)
- It could only happen in real life - it's too surreal for fiction! (Posted: 19/06/2007)
- Testosterone May Benefit Men With MS. (Posted: 15/05/2007)
- Foyle Branch Meets Governance Review Group. (Posted: 07/05/2007)
- Unanimous Branch Support for Mediation at Disputed Meeting (Posted: 01/05/2007) Recent
- MS Gender Gap Doubles over Last 60 Years in US (Posted: 01/05/2007) Recent
- NI Members invited to Extraordinary General Meeting on 28 April (Posted:03/04/2007) Recent
- Prospect of UK Finance for NI in Chairman's latest letter (Posted:03/04/2007) Updated/Corrected/(14/04/2007)
- Russian Pianist with MS performs around the world to raise funds for MS groups (Posted:03/04/2007) Recent
- Strong Support For NI Council at Meeting (Posted:01/03/2007)
- NI Council Suspended (Posted 08/02/2007)
- Worms and MS (Posted: 26/01/2007)
- PC Receives Payment for Delayed Diagnosis of MS (Posted: 08/01/2007)
Items posted 2007
Fined for Speeding in a Wheelchair
According to a report on the Ananova website a wheelchair user in Germany was fined £300 and had his wheelchair confiscated for travelling at 40mph on a high street. Apparently the 54 year old engineer had modified the engine so that it could go faster.
Top
From Inkjet Technology to Painless Injection via an Irish Company???
Crospon, a medical device developer based in Galway, Ireland, has annnounced that it has entered a licensing agreement with computer technology giant HP for a drug delivery patch that they claim will be able to control the release of one or more drugs through a single patch applied to the skin. The technology has been developed by HP from its inkjet printer technology which delivers tiny jets of ink to very precise positions on paper. Apparently the patch uses tiny needles in place of jets to direct the drug through the skin and quickly into the bloodstream and is claimed to be virtually painless.
Patch technology is not new but the existing technology uses medication to enable the drug to penetrate the skin which acts as a barrier. Crospon plans to manufacture the patches under license from HP and to and market them to the medical community.
Crospon's work to date has been mainly in the areas of diabetes and gastroesophageal reflux disorder. Is it too much to hope that the patches might have a use in delivering MS treatments that currently have to be delivered by injection?
Top
Riveting Interviews with Young Persons Diagnosed with MS & their Parents
The Accelerated Cure Project was started by engineer Art Mellor in 2001 when at the age of 37 he was diagnosed with MS. Also known as Boston Cure Project, this non-profit company is dedicated to curing MS by determining its causes. There is a link to its website on our Useful Links page.
The project has published a very moving video of interviews with a number of young persons with MS in the US and their parents discussing the impact the diagnosis of MS is having on their lives. The 55 min video will be of general interest to any member but will be of special interest to any young person and/or their parents trying to come to terms with their MS. It can be viewed at Finding Our Way .
Top
Marathon Running with MS at Age 59
59 year old Zoe Koplowitz completed her 20th New York marathon in 28 hrs 45 mins. Maybe not remarkable when the race was won by Paula Radcliffe in a time of 2hrs 23 mins 9 secs. But what is remarkable is that Zoe walked all the way with crutches and braces on her back and knee.
Zoe has diabetes and was diagnosed with MS 30 years ago. After finishing, she commented that she wasn't getting any younger and her MS wasn't getting any better but she hoped to keep taking part in the race as long as she's able to keep getting around.
Top
Evidence of Epstein-Barr Virus in Multiple Sclerosis Brain Tissues
There is growing evidence of a link between the very common Epstein-Barr virus and MS. See information on Epstein-Barr virus elsewhere on this page.
Now investigators report finding evidence of the virus in the immune cells of the brains of 21 out of 22 persons with MS examined post mortem. However they are unable to say whether the virus is a cause of MS or its presence is as a result of MS.
The study was carried out by Dr. Francesca Aloisi (Instituto Superiore di Sanita, Rome) and colleagues from Italy and the United Kingdom and was published online in the Journal of Experimental Medicine on November 5, 2007. It was funded jointly by the European Union, the Italian MS Foundation, and the Italian Ministry of Health. Interestingly, most of the brain specimens were supplied by the UK MS Tissue Bank which is funded by the MS Society of Great Britain and Northern Ireland.
Top
Important Changes to Disability Discrimination Act- MS included from Diagnosis
The definition of disability is amended so that people with cancer, multiple sclerosis or HIV are, from 31 October 2007, covered from the point of diagnosis rather than from the point when the condition has some adverse effect on their ability to carry out normal day-to-day activities.
Further information is available on the NIMSS site at NIMSS item on DDA and on the Equality Commission site at You are now covered. Top
Visit the PatientsLikeMe site
PatientsLikeMe is a unique treatment and outcome sharing community for people with life-changing diseases. It was launched in 2006 for ALS (Lou Gehrig's disease) and has recently expanded to include Multiple Sclerosis and Parkinson's disease. You can search for a particular treatment or symptom to find out the experience of over 2,300 persons. You can also join (it's free) and add your own treatments and symptoms to the database. Many of the contributors give permission for their individual details to be made public and these can be accessed on the site.
Top
Governance? Workshop
The most pressing issue facing MS branches in NI is the structural vacuum created when MSUK suspended the NI Council almost 6 months ago. At least that was the view of the large attendance at the workshop on 26 July 2007. Members of the Foyle Branch were joined by colleagues from Strabane Branch expecting to be assisted in exploring possible forms of governance as a step in the restoration of a Council in NI. Instead the facilitators from CMWorks had been directed by the Governance Review group to discuss only branch development issues. Despite repeated indications of the frustration and annoyance felt by members, the CMWorks ladies were treated courteously and tried to stick to their brief . However, the continuing absence of a NI structure has potentially devastating consequences for branch attempts to access grants from Trusts and other NI bodies and for sustaining branches and, inexplicably, the Governance Review group excluded it from the workshop. Inexplicably because the unacceptable alternative would be that the CMWorks group was employed merely as a sop to give a veneer of independence to the consultation exercise.
Top
It Could Only Happen in Real Life - it's too Surreal for Fiction!
According to a report on the Michigan Wood 8 website, Ben Carpenter, who has muscular dystrophy, was crossing a road in his wheelchair and didn't quite make the footpath before a truck moved off and the handles of his wheelchair were caught in the grill of the truck. Apparently oblivious of his stowaway passenger, the truck driver travelled 5 miles at about 50 mph before making a stop. Thankfully, Ben was uninjured and seemed remarkable unconcerned. He is quoted in the report as saying "I thought it was kind of like a fair ride. I don't remember feeling any bumps though. I must have, but the road must have been pretty smooth." His quoted comment that " It was fast, I know that. Faster than this chair was made to go" must be the understatement of the year.
TopTestosterone May Benefit men with MS
A small study of 10 men with MS suggests that testosterone may have a beneficial effect for men with MS. The study, reported in Archives of Neurology, May 2007; vol 64: pp 683-688, was carried out by a team of researchers from the the University of California at Los Angeles. They warned that the study was so small that further research is required before any general conclusions can be drawn. The fact that MS is much more common in women than men and evidence that MS often abates during pregnancy and that women with MS have lower levels of testosterone than those without all suggest a connection between hormone levels and MS. The men with an average age of 46 had MS for about 12 years on average. None was using disease modifying drugs. After a six-month observation period, the men applied a testosterone gel to their upper arms once daily for a year. This preliminary study found that testosterone treatment was associated with better scores on mental skills test and a 67% slowdown in loss of brain volume. The men's lean muscle mass also rose with testosterone treatment.
Top
Foyle Branch Meets Governance Review Group
A representative group led by Chairperson, Peter Eakin, met with UK Vice-Chairperson, Judy Illsley, UK Board Secretary, Susannah Hughes and NI Temporary Manager, Ken Roulston on Thursday, 3rd May 2007. To borrow a phrase from the politicians, there was a 'frank exchange of views' with both sides agreeing to reflect on the exchange.
Top
Unanimous Support for Mediation at Disputed Meeting on 28 April
A call for mediation as the only way to break the continuing impasse between the UK Board of the MS Society and the NI Council(suspended) received unanimous support from NI branches at a meeting in Antrim on Saturday last (28 April 2007). The constitutionality of the meeting had been challenged in a letter from UK Chairman, Mr Kennan, to all NI members. However the meeting went ahead and it remains to be seen whether the UK Board will take on board the passionately expressed hurt and dismay of the branches in NI at the actions of the Board.
Top
MS Gender Gap Doubles Over Last 60 Years in US
Researchers at the University of Alabama at Birmingham School of Public Health report that the number of women to men with MS had increased from two to one in 1940 to four to one in 2000. They looked at the gender ratio following a Canadian study that reported in 2006 that the female-to-male MS ratio in Canada had increased from about 1.9-to-1 in 1931 to about 3.2-to-1 in 1980. The researchers suggest that these changes may be due to different environmental and lifestyle choices of women and men (e.g. use of cosmetics, hair dye, contraceptive pill etc.)
Top
NI Members Invited to Extraordinary General Meeting on 28 April
Members throughout NI have been invited to attend an extraordinary general meeting convened by the Officers and Committee of MSSNI in Antrim on Saturday, 28 April to be informed of their account of events and to consider a number of resolutions regarding the way forward.
Top
Prospect of UK Finance for NI in Chairman's Latest Letter
UK Chairman, Mr Kennan, has again written to members in Northern Ireland. He informs them that the UK Board has appointed Ken Roulston as an interim manager in NI on a short-term contract. Although Ken is identified as Managing Director of Finisco Business Solutions on the website of the IT business he ran with it's founding partner in Belfast, apparently he resigned from the company last year. Ken previously worked with Viridian-owned Sx3. According to a report in leading business magazine, Business Eye, he said he felt as if he was renting his career with Sx3 and he had long had a hankering to run a smaller company which was either his own or one he had an interest in. Since his current appointment is temporary, Ken can hardly regard it as the fulfillment of his hankering although he has resigned his position as Chairman of Disability Action from 29 March. The temporary position was filled through a Belfast agency.Mr Kennan also holds out the prospect of some UK money for NI. Proposals for as yet unspecified expenditure by the UK Board on MS services in Northern Ireland are to be presented to the UK Board. Investment by the UK Board in NI will of course be a welcome development but coming as it does in the middle of the current difficulties and announced in a letter from the Chairman to members regarding issues connected with those difficulties, it is likely to be regarded by some as a sweetener designed to promote support for the contentious actions of the Board. Any such suggestion is viewed with concern by the Board and is rejected as being contrary to the remit of a charity.
The other news is that a "Governance Group" has been established under the leadership of UK Vice- Chair, Judith Illsley, to look at options for the future. No information is provided about the precise terms of reference or the procedures and decision making processes of this group. Three representatives of the suspended NI Executive, the NI Trustee and "representatives of the broader membership in NI" will be "invited to attend". Since the Society is "a strong member-led organisation" that wants "a change to arrangements for governing MSSNI that are more democratic, promote openness and accountability and allow more effective delivery of services to people with MS" it had been anticipated that the "representatives" of the broader membership would be elected on the basis of a democratic election among all the NI members. Instead the Governance Group is apparently talking to some individuals who have volunteered to meet with it. Branch officers have also been invited to meet the group.
The Board "will also seek the involvement of appropriate external independent advisors from within NI" in the group and at first sight this appears to be a positive move but, if it is a response to the demand for independent mediation, it misses the point and confuses the situation by linking what could and should be a separate exercise of governance review with the continuing suspension of the existing constitutional governance body in NI. How can the Board expect the very persons it has suspended to participate until their suspension is lifted and their positions are restored? The call for mediation is in regard to resolving that continuing impasse in the best interest of persons with MS in NI.
Top
Russian Pianist with MS Performs Round the World to Raise Funds for MS Groups
Russian pianist Olga Bobrovnikova was diagnosed with MS in 2000. Since then she has dedicated her love of music and the piano to raising awareness and funds in the fight against Multiple Sclerosis all around the world. She established the Mu-Sic Foundation, a non profit organisation that funds her performances and funnels ticket sales directly to local MS charities. Olga created the concept of Mu-Sic to generate awareness of MS by using music and musicians. It supports the work of MS Charities around the World. Further information on her and videos of her inspirational performances in support of MS around the world can be viewed on her website
Top
Strong Support For NI Council At Meeting
There was strong support for the NI Council at a recent meeting attended by around 100 members of the society from throughout NI. A motion calling for the reinstatement of the Council was carried by a two thirds majority and there was unanimous support for a motion calling on the UK Society to avail of independent mediation to resolve any issues.
Top
NI Council Suspended
Branches and Members throughout Northern Ireland will have been shocked by today's bombshell from the Trustee Council of the UK & NI MS Society which announced it had suspended The Northern Ireland Council. A statement issued by the trustees is reproduced below together with a link to a copy of a letter to be sent to all members in NI. A spokesman temporarily drafted in to NI has assured members and the public that there is no question of any financial impropriety but rather an alleged unsatisfactory working relationship
Webmaster's comment: There are two sides to every dispute and the sooner the issues are clarified and the matter resolved the better for the Association and all the members.
Statement:
MS Society suspends council in Northern Ireland
08 Feb 2007The MS Society of Great Britain and Northern Ireland has suspended the Council of the MS Society of Northern Ireland. The MS Society has assured people affected by multiple sclerosis that services will not suffer. At a board meeting this morning (8 February), the trustees of the MS Society of Great Britain and Northern Ireland voted to suspend the delegated powers of the council of the MS Society of Northern Ireland.
MS Society Chief Executive Simon Gillespie said:
"We have taken these steps with great reluctance as a result of a lack of cooperation from officers and senior staff at the MS Society of Northern Ireland, which we believe is not in the interests of people with MS.
"The priority of the trustees is to make sure that the best possible support is available to everyone living with MS. Our short-term goal is to ensure that services provided to people affected by MS in Northern Ireland, particularly at the Resource Centre in Belfast, will continue to be provided.
"In the longer term, we are putting in interim arrangements to make sure our members and branches in Northern Ireland are fully consulted over how the MS Society is run in the future. "And I want to personally appeal to staff and volunteers to work alongside us to ensure people with MS are not affected."
MS Society Chairman Tony Kennan said:
"The MS Society UK-wide provides a lot of support to the MS community in Northern Ireland and we want to strengthen our presence here. We want the MS Society in Northern Ireland to return as soon as possible to being an organisation run by local people, providing the best possible services to people with MS, as part of a UK-wide MS Society with all the benefits that brings."
Letter
A letter which you can download here has been sent to all members of the MS Society in Northern Ireland.
(The Letter to Members is a pdf file and requires Adobe Reader which can be download free from
.)
Top-
WORMS AND MS
Researchers in Buenos Aires decided to carry out a small study into whether the prevalence of MS around the world might be linked to levels of hygiene - levels generally being higher in developed countries. They speculated that the immune systems of persons exposed to such infections might develop regulatory cells that dampen the over-active immune response of persons with MS.
They compared a dozen persons with relapse remitting MS already infected with either tapeworms, roundworms, nematodes, threadworms or pinworms to a dozen matched non-infected persons also with MS. They followed up the groups for four and a half years.
They reported that the persons with MS had a total of three relapses between them as compared with 56 relapses among 10 of the 12 worms free persons.
The groups were also subjected to a battery of medical and disability tests with the infected group consistently performing better than their comparators.
The study was carried out by Jorge Correale, M.D., and Mauricio Farez, M.D., of the Raul Carrea Institute for Neurological Research, and colleagues and was reported in Ann Neurol 2007.61;1.
Top PC RECEIVES PAYMENT FOR LATE DIAGNOSIS OF MS
A policeman from Sussex who was referred to his GP in 1992 with possible MS was subjected to a series of tests in Eastbourne District General Hospital but was not informed that he had MS until 2003. He discovered that his condition was known to the medical staff as far back as 1995. He sued the Trust with the support of the Police Federation and received £10000 in an out of court settlement together with an apology. He had been told that there was nothing serious the matter and he had made financial and family commitments on that basis. He also believes the decision may have deprived him of access to treatment that might have helped his condition.