1. An Awesome Wheelchair (Posted: 30/12/2006)
2. News of LDN in MS Pilot Trial (Posted: 29/12/2006)
3. More Evidence on Vitamin D Levels and MS Risk (posted: 20/12/2006)
4. Evaluation of a MS Specialist Nurse Programme (posted: 10/11/2006)
5. MS and Your Feelings by Allison Shaddy (posted: 08/11/2006) Advance notice of forthcoming book
6. Research Reports from Jordanstown (Posted: 01/11/2006)
7. Form of Vitamin B3 reduces disability in mouse model of MS(Posted: 21/09/2006)
8. Tetanus Vaccination Reduced The Risk Of MS (Posted: 01/08/2006)
9. Children Of Men With MS Twice As Likely To Develop MS (Posted: 01/08/2006)
10. Tysabri given new approval by FDA (Posted: 06/06/2006)
11. JK Rowling Makes Large Contribution to MS Research Centre (Posted: 20/04/2009)
12. Epstein-Barr Virus And Multiple Sclerosis (Posted: 19/04/2006)
13. Sativex Spray Update Disappointing (Posted: 30/03/2006)
14. Tysabri looks like getting a second chance in US (Posted: 15/03/2006)
15. Bee Sting Study Found No Improvement in MS (Posted: 20/02/2006)
16. Scientists Suggest Exposure to Aluminium Linked to MS (Posted: 17/02/2006) Could it be this simple?
17. New York Central Station Exhibition of Photos of Persons with MS (Posted: 16/02/2006) Website worth visiting
18. Experiences of Children and Adolescents Living with Multiple Sclerosis (Posted: 08/02/2006) Interesting study
19. MS waiting lists to disappear in two years in NI promises Minister (Posted:07/02/2006)Good news for NI
20. Shake, Rattle & Roll Your Way To Better Mobility & Balance? (posted: 19/01/2006) Recent
21. Effects of Beta-interferon on Adolescents & Children (posted: 15/01/2006) Encouraging - Recent

Top

Items posted 2006

1. AN AWESOME WHEELCHAIR

   How about an electric wheelchair that goes up steps, through snow, through fields or on a beach? This is just what a man in USA built for his wife who was frustrated by the limitations of her traditional chair. He named it the TANKCHAIR and is offering to manufacture and sell custom versions for any interested party. It took him two years to design and for every ten sold he promises to make one for charity. But wait for it - it runs on caterpillar tracks. Photos and videos of the chair can be viewed on his website.

Top

2. NEWS OF LDN IN MS PILOT STUDY

   According to a report on the Low Dose Naltrexone website, a clinical pilot study of LDN for MS has started in Italy and will conclude in six months. The study is designed to track levels of endorphins in patients in response to LDN.

Top

3. MORE EVIDENCE ON VITAMIN D LEVELS AND MS RISK

   A team from Harvard School of Public Health investigated levels of vitamin and risk of MS among more than 7 million US military personnel who had serum stored in the US Department of Defense Serum Repository. They reported the outcome in Vol. 296,No. 23, Dec 20, 2006 of The Journal of the American Medical Association.

   They found that the risk of multiple sclerosis significantly decreased with increasing levels of vitamin D in the blood among white personnel but not among black or hispanic personnel.

   Webmaster's comment:These findings add to a growing body of evidence of a link between levels of vitamin D and the risk of MS. Most of the research deals with the link between levels of vitamin D up to and at the onset of MS. There is no suggestion that taking vitamin D after onset will alter the course of the MS.

   Earlier postings can be viewed at Vitamin D could help to prevent MS and Childhood exposure to sun may help to prevent MS

Top

4. EVALUATION OF A MS SPECIALIST NURSE PROGRAMME IN ENGLAND

   The MS Society has long argued for the appointment of Specialist MS Nurses. The Foyle Branch currently jointly funds a specialist MS nurse with the Western Health & Social Services Board and the branches in Strabane, Castlederg, Omagh and Enniskillen. A study reported in the November edition of the International Journal of Nursing Studies (.Int J Nurs Stud. 2006 Nov;43(8):985-1000) may be of interest to members.

   Researchers from The Florence Nightingale School of Nursing & Midwifery, King's College London, examined the impact of a programme of MS specialist nurses on MS health care provision and on the health and well-being of people with MS. They compared a group from regions where Specialist MS Nurses were being appointed with a control group from regions without any. Information related to care processes (information provision and care quality) and health outcome measures, hospital admissions, MS complications, health-related quality of life and disease impact was collected before the appointment of the MS nurses and then at 12 and 24 months afterwards.

   The researchers concluded that the specialist nurse programme had a positive impact on the provision of MS-related health care. However, there was very limited evidence that the programme led to any improvements in disease-related problems or health-related quality of life. A small but significant deterioration on the physical outcome measures was observed in the regions with nurses but the researchers suggested this was due to the fact that people with worsening health problems were more likely to contact the specialist nurse. They recommended that future research in this area should focus on the effects of specific interventions that nurses and other health professionals might employ in addressing the many problems confronting people with MS.

Top

5. MS AND YOUR FEELINGS by Allison Shaddy with a foreword by Stanley Cohan.

   Allison Shaddy is a clinical social worker and psychotherapist with 14 years of experience counselling chronically ill patients and their families. She was diagnosed with MS in 1995. Her book deals with a much neglected topic - how to relieve the psychological trauma (psychological numbing, denial and acceptance, guilt and depression, loneliness) often experienced when diagnosed with MS. The book outlines a number of strategies for coping derived from her years of counselling. Stanley Cohan is a neurologist. In addition to the foreword he contributes to a chapter on developments relating to drugs for MS.

   The book (ISBN: 089793489X) in paperback format was published by Hunter House in the US in October and has been warmly welcomed by the MS Foundation in the US. It is expected to be published in the UK in February 2007 at a list price of £11.99.

Top

6. UNIVERSITY OF ULSTER RESEARCH REPORTS

   The Health and Rehabilitation Sciences Research Institute, University of Ulster, Jordanstown has recently reported on three research projects in which members of the Foyle Branch participated. The reports have been published in various research journals. A brief comment on each is provided here.

   • EFFICACY OF TRANSCUTANEOUS ELECTRICAL NERVE STIMULATION (TENS) FOR CHRONIC LOW-BACK PAIN IN A MULTIPLE SCLEROSIS POPULATION: A RANDOMIZED, PLACEBO-CONTROLLED CLINICAL TRIAL.

     This study investigated the pain control effects of self-applied transcutaneous electrical nerve stimulation (TENS) on chronic low-back pain among persons with MS. Complex scientific measures and statistical analyses were applied and the team reported that, although some 'clinically important' differences were observed, these were not statistically significant. The report was published in the November/December 2006 Journal of Pain.

   • COMPARISON OF PELVIC FLOOR MUSCLE TRAINING, ELECTROMYOGRAPHY BIOFEEDBACK, AND NEUROMUSCULAR ELECTRICAL STIMULATION FOR BLADDER DYSFUNCTION IN PEOPLE WITH MULTIPLE SCLEROSIS: A RANDOMIZED PILOT STUDY

     Interventions such as Pelvic Floor Training and Advice (PFTA), Electromyography Biofeedback (EMG) (Electromyography is a test that assesses the health of the muscles and the nerves controlling the muscles.) and Neuromuscular Electrical Stimulation (NMES) ( an electrical means of stimulating nerves and muscles) are often employed to improve bladder function. Bladder dysfunction is very common among persons with MS and this study sought to determine the effectiveness of combining all three interventions over a nine week period. Participants were randomly allocated, under double blind conditions, to one of the three groups: Group 1 (PFTA); Group 2 (PFTA and EMG); and Group 3 (PFTA, EMG Biofeedback, and NMES). The team reported that Group 3 demonstrated greater benefit than Group 2, with Group 1 showing less improvement. The differences showed statistical significance and they concluded that the combination of these interventions may reduce bladder dysfunction in MS. The report was published in Neurourol Urodyn. 2006;25(4):337-48.

   • MEASURING QUALITY OF LIFE IN MULTIPLE SCLEROSIS: NOT AS SIMPLE AS IT SOUNDS

     Data that was available from a clinical study was used examine the effectiveness of a quality of life measure among persons with MS known as the Leeds Multiple Sclerosis Quality of Life scale. Complicated correlations and statistical analyses were employed but the team experienced difficulty in interpreting the data and recommended that health-rating scales should be developed on the basis of clear conceptual definitions. The report was published in Mult Scler. 2005 Dec;11(6):708-12

Top

7. FORM OF VITAMIN B3 REDUCES DISABILITY IN MOUSE MODEL OF MS

   Nicotinamide, a form of niacin (vitamin B3), significantly prevented neurological disability in a mouse model of MS. Scientists from the Division of Neuroscience, Children's Hospital Boston, Harvard Medical School, and Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts reported their findings in the September 20th issue of the Journal of Neuroscience (J. Neurosci 2006; 26(38):9794 -9804).

   The researchers found that the treated mice had significantly lower disability scores and little or no progression, compared to control animals. They suggest that nicotinamide may have a protective effect against progressive neurological disability associated with MS.

   Vitamin B3 is already used clinically to treat pellagra, high cholesterol and other disorders. This work is preliminary and the researchers warned that the doses involved in their study would equate in humans to much higher levels than are currently used clinically. Clinical trials and safety studies would have to be carried out before any conclusion could be reached about a possible application in MS.

Top

8. TETANUS VACCINATION REDUCED THE RISK OF MS

   Dr. Miguel A. Hernan and colleagues from Harvard School of Public Health investigated the association between tetanus vaccination and MS risk by conducting a systematic review of studies from a number of databases between 1966 and 2005. They concluded that tetanus vaccination reduced the risk of MS by about one third.

   They recommended further studies of timing of vaccination and the number of doses involved.

   The study was reported in the July 25, 2006 issue of Neurology

Top

9. CHILDREN OF MEN WITH MS TWICE AS LIKELY TO DEVELOP MS

   Neurologists from the Mayo Clinic, the University of California at Berkeley and Kaiser Permanente in Oakland, California compared the incidence of MS among children of affected adults. They concluded that children of men with MS are twice as likely to develop MS as children of women with MS.

   Twice as many women as men develop MS which is generally thought to result from a combination of a genetic susceptibility and an environmental factor (possibility linked to one or more viruses). The authors suggested that the different rates among men and women are likely to reflect differences in genetic susceptibility. Their hypothesis was that since men are more resistant to MS, so they need stronger or a larger number of genes in order to develop MS, and then pass these genes to their children. Their children would therefore inherit a much higher genetic susceptibility than the children of affected women.

   The investigators noted that because women with MS have fewer children than women who don't have the disease, it is not possible to determine whether the effect is related to over-transmission of genetic susceptibility due to some factor intrinsic among men, or under-transmission among women. They also stressed that the risk of having MS if a person has an affected parent is increased by about 20-fold compared to not having an affected parent; the additional risk by virtue of having an affected father is not sufficient to affect the decisions of persons with MS about whether to have children.

   The research was reported in the July 25, 2006 issue of Neurology

Top

10. TYSABRI GIVEN NEW RESTRICTED APPROVAL BY US FDA

    The US Food and Drug Administration (FDA) has, as anticipated, given new approval of Tysabri for treatment of relapsing forms of MS under a special restricted distribution programme.

    Under the licence, issued on 5 June 2006, tysabri may not be administered alongside other treatments such as beta-interferon because not enough is known about how it might interact with other drugs. Its use is also restricted to patients who have not responded adequately to, or cannot tolerate, other treatments for MS. Tysabri will only be available through a Risk Management Plan, called the TOUCH Prescribing Program. In order to receive Tysabri, patients must talk to their doctor and understand the risks and benefits of Tysabri and agree to all of the instructions in the TOUCH Prescribing Program. The drug, which is taken by monthly intravenous injection, will only be dispensed at registered infusion centres to be established across the US.

    Tysabri was initially approved by the FDA in November, 2004, but was withdrawn by the manufacturer in February 2005 after three patients in the drug's clinical trials developed progressive multifocal leukoencephalopathy (PML), a serious viral infection of the brain. The approval is based on positive results from two clinical trials showing that Tysabri significantly reduced the risk of sustained progression of disability and the rate of clinical relapse in those with relapsing MS.

Top

11. JK ROWLING MAKES BIG CONTRIBUTION TO MS RESEARCH CENTRE

    According to a report in the Scotsman (20/04/2006) the Harry Potter author has made a large donation to fund research into MS. She is the Patron of the MS Society Scotland. Her mother died aged 45 in 1990 after developing complications from rapidly progressive MS. She made the undisclosed donation through the MS Society Scotland which has contributed £2.1 million towards a £2.5 million project at Edinburgh University. The project is to be based at the Centre for Regenerative Medicine at Edinburgh Royal Infirmary.

    The work will look at how experts can repair damaged parts of the nervous system in patients and prevent further deterioration. The scientists hope the centre will strengthen links with other British and international MS experts in a bid to reach a better understanding of the condition.

    Rowling donated £1 million towards MS research in Scotland in 2003. She is quoted as saying: "It means a great deal to me to be able to provide support for this much-needed research centre."

    Top

12. EPSTEIN-BARR VIRUS AND MULTIPLE SCLEROSIS

    Epstein-Barr virus (EBV) is a member of the herpesvirus family and one of the most common human viruses. Most people become infected with EBV sometime during their lives. Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood.

    When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis about 40% of the time. The most common symptoms of infectious mononucleosis are fever, sore throat, and swollen lymph glands. Although the symptoms usually don't last more than a month or two, EBV remains dormant or latent in a few cells in the throat and blood for the rest of the person's life. EBV is also believed to establish a lifelong dormant infection in some cells of the body's immune system.

    The cause of MS is not known although research suggests that there may be at least two factors involved - a virus and an immune system effect. The most widely held view is that a virus or more than one virus may trigger a reaction in a person's own defence or immune system which causes it to attack its own myelin as though it was a virus. This is known as an auto-immune reaction and, although there is no evidence of MS being transmitted genetically, it is believed that people affected by MS may have a genetic factor that leaves them vulnerable. Research has attempted to identify viruses that may be involved, but results to date, although showing promising progress, have not yet fully succeeded. Now two recent studies provide supporting evidence of a link between EBV & MS.

    According to a report posted this month online on the Archives of Neurology website (Arch Neurol. 2006;63:(doi:10.1001/archneur.63.6.noc50328)), blood samples had been taken from about 100000 members of a Californian health plan between 1965 & 1974 and stored at low temperature. Eventually 42 persons with diagnoses of MS were identified & followed up between 1995 & 1999. A relationship between the level of EBV antibodies and MS emerged. One outcome was that the relative risk of MS associated with a 4-fold increase in antibodies was 2.1.

    The second study reported in the Annals of Neurology (Ann Neurol 2006;59:499-503.) was carried out by researchers from The Harvard School of Public Health, Boston, who statistically combined 14 studies conducted in the US, Europe, and Australia to develop an overall view of the connection between infectious mononucleosis and MS. They report that the combined relative risk of MS after infectious mononucleosis was 2.3. This suggests that persons who get infectious mononucleosis while growing up are twice as likely as the general population to get MS. These researchers suggests that the development of a safe & effective childhood vaccine against EBV might protect some persons from later MS.

    Top

13. SATIVEX SPRAY UPDATE DISAPPOINTING

    GW Pharmaceuticals announced disappointing preliminary results on 17 March 2006 from a Phase III study of Sativex in the relief of spasticity in people with MS. Sativex is licensed in Canada and is obtainable under special permit in UK.

    The study involved persons with MS who had failed to respond to other available anti-spasticity treatments. Multiple sclerosis patients with spasticity who used the under-the-tongue spray and stuck to the trial's protocols (continued the treatment to the end) did benefit. But an "intention to treat" analysis (all study patients whether or not they continued the treatment to the end) found no statistically signitficant advantage compared with a placebo.

    The Company reported that Professor Mike Barnes, Professor of Neurological Rehabilitation, University of Newcastle, and President of the World Federation of neuro-rehabilitation, said: "This study explored the effects of Sativex in a high need patient population who, by definition, had exhausted all available anti-spasticity medication and yet remained in need of treatment. As a clinician, the positive per protocol result confirms to me that Sativex has a valuable role in treating those patients for whom there are no further treatment options available."

    GW Pharmaceuticals said that this study is one of several studies included within their Phase III clinical programme for Sativex in the relief of peripheral neuropathic pain and cancer pain as well as pain and spasticity in multiple sclerosis. They have expressed optimism that the outcome of trials in the other two areas will be more positive.

    The company says that it will await the outcomes of all the trials before deciding whether to include tretament for MS pain in any application for approval

    Top

14. US FDA ADVISORY COMMITTEE RECOMMENDS SECOND CHANCE FOR TYSABRI

    In reaching its unanimous recommendation, the committee took account of three studies, all supportive of the drug, published recently in the New England Journal of Medicine.

    According to one of the studies, patients taking Tysabri had 92% fewer MS lesions on MRI than controls. A second study showed that Tysabri in combination with Avonex (interferon beta-1a) was significantly more effective than Avonex alone at preventing relapses over two years. However, three of the participants in this study developed PML and two died. Tysabri was withdrawn as a result See an earlier item.

    The third study reviewed records of more than 3,000 patients who received Tysabri in clinical trials and found no new cases of PML beyond those that had already been reported. The advisers also voted 7-5 to recommend Tysabri as a treatment for relapsing forms of MS, with mandatory controls to ensure that any new cases of PML are found quickly.

    The FDA(U.S. Food and Drug Administration) is not bound by the recommendations of its advisers but generally follows them.

    Top

15. BEE STING THERAPY FOR MS DID NOT PRODUCE IMPROVEMENT SAYS STUDY REPORT

    We posted an item in December 2004 about a woman who believed self administered bee sting venom had a beneficial effect on her MS.

    The results of a randomised crossover study of 26 people with either relapsing remitting or secondary progressive MS between the ages of 18 and 65 in the Netherlands was published in the journal Neurology (2005. Vol. 65, part 11, pages 1764-1768) in December 2005. The study was supported by Multiple Sclerosis International (Amsterdam)

    The group was randomly divided into two, one half receiving bee sting therapy and the other receiving no treatment. After 24 weeks the treatment groups were swapped for a further 24 weeks. Live bees in gradually increasing numbers up to a maximum of 20 were used to administer bee stings three times per week.

    The results showed that treatment with bee stings did not reduce the number of relapses that a person had or the number of areas of new damage found in the brain or spinal cord nor did they have any beneficial effect on fatigue or quality of life.

    Webmaster's comment: As reported in the 2004 item, bee venom can cause a fatal anaphylactic allergic response in some people. The participants in this study were screened for this allergy before participating in the study and did not experience any serious adverse reactions.

    Top

16. SCIENTISTS SAY EXPOSURE TO ALUMINIUM LINKED TO MS

    According to a report on the Medical News Today website, scientists at Keele University have discovered the first evidence of a link between human exposure to aluminium and multiple sclerosis. The scientists found a very high level of aluminium excreted in the urine of persons with MS, particularly in the relapsing-remitting form of the disease, leading them to speculate that exposure to aluminium may be the hitherto undiscovered environmental factor in MS.

    Top

17. NEW YORK CENTRAL STATION EXHIBITION OF PHOTOS OF PERSONS WITH MS

    A celebrated photographer, Joyce Tenneson, was sponsored by Berlex, the firm that produces betaseron, a proprietary form of beta interferon, to exhibit a series of photographs of persons with relapsing/remitting MS who are all on betaseron in New York's Central Station last year. Each photograph is accompanied by an account of the attitude of the person to MS and the impact of the diagnosis on his or her life. While the sample is not in any way representative of the vastly differing degrees of disability associated with MS & serves a marketing function for Berlex, it demonstrates the heartening determination of the participants to lead their lives to the fullest and most active extent.

    Although the exhibition is over, the photos and interesting accounts can be viewed on a Berlex website entitled The Image of MS.

    Top

18. EXPERIENCES OF CHILDREN AND ADOLESCENTS LIVING WITH MULTIPLE SCLEROSIS

    An interesting study of the experiences of children & adolescents living with MS has been published in the Journal of Neuroscience Nursing. Little is known about their experiences and the purpose of the small study was to learn directly from children and teens what it is like to live with the diagnosis of MS in the hope that it would increase understanding of strategies for optimizing nursing care.

    Twelve children and adolescents between the ages of 8 & 18 with relapsing-remitting MS, 7 female and 5 male, participated in the study. All were treated in the Pediatric Multiple Sclerosis Clinic at the Hospital for Sick Children, Toronto. They received their diagnosis as recently as 5 months to as long as 10 years prior to the study. The participants answered a structured questionnaire and were individually interviewed.

    The researchers reported that despite varied experiences of the participants, common themes emerged from the study.

    The young people were unfamiliar with MS when diagnosed and had a range of feelings about the diagnosis. They gradually learned about MS from a variety of sources including just living with the disease. Over time, they adapted to the effects of MS and incorporated changes caused by MS into their lives. Most participated in social and recreational activities typical of their age group & although their lives were different because they had MS, they felt unchanged in many ways. They reported both positive and negative changes in their relationships after diagnosis. Effects such as heat intolerance, fatigue, cognitive difficulties, headaches, numbness, & hand tremor presented challenges but they developed various coping strategies with the assistance of supportive people in their lives. They wanted to get on with life and had hopes & plans for the future. Although their MS helped to shape their self-identities, it was only one component of who they are.

    The full report which identifies a number of actions that nurses dealing with young persons with MS and their parents should consider is available at the Medscape website

    Top

19. MINISTER PROMISES WAITNG LISTS FOR MS TREATMENT IN NI WILL DISAPPEAR WITHIN 2 YEARS

    There are currently about 160 persons with MS in NI on a waiting list, whose neurologists have determined they would benefit from interferon treatment . This is caused by a combination of insufficient money for the drugs and a shortage of specialist MS nurses who are needed to train recipients of the drug in how to self-administer the injections.

    Shaun Woodward, the Minister with responsibility for health, has just announced an allocation of £ 2million towards an elimination of the waiting list within two years. Interferon is not a cure for MS but it has proven benefits in increasing the periods of remission between bouts of inflammation, particularly in cases of young persons with relapsing/remitting MS. This delays the progression of MS and helps to prolong independence and a more normal quality of life for recipients.

    The Minister paid special tribute to a presentation by the NI MS Society before Christmas which he said so impressed him that he decided to implement steps to bring the waiting list to an end. This is welcome news for the MS community in NI.

    Inset is a photo of Shauna & Cliona from the Foyle Branch with the Minister at the press conference. See also the item on the Activities & Events page.

    Top

20. SHAKE, RATTLE & ROLL YOUR WAY TO BETTER MOBILITY & BALANCE?

    

    A team from the Department of Physical Medicine and Rehabilitation, Medical University of Vienna, Austria, examined whether whole-body vibration (scientifically controlled mechanical oscillations on a special machine) in comparison to a placebo administration leads to better postural control, mobility and balance in patients with MS.

    Twelve MS patients with moderate disability were allocated either to the vibration group or to the placebo group. The placebo group were also placed on the machine but were subjected to a similuated experience instead of the controlled vibrations. The trial was 'double blind' in which none of the participants was aware of the differences in the experiences.

    The results of this small pilot study indicated that whole-body vibration may positively influence the postural control and mobility in multiple sclerosis patients. The effects were strongest one week after the intervention began

    The research was reported in the December 2005 volume of the journal Clinical Rehabilitation where the accompanying image was included with the permission of Irschitz GmBH.

    Top

21. EFFECTS OF BETA-INTERFERON ON ADOLESCENTS & CHILDREN

    To date there has not been any large scale controlled study of the effect of interferon-beta and other similar drugs on adolescents and children with MS although they are increasingly being used to limit the effects of MS.

    However, a recently reported Italian study provides encouraging information on the safety and effectiveness of these drugs based on observations of 81 young people who were treated with these drugs.

    The average age of onset of MS was 12.4 years and on average they started treatment 19.7 months after onset. After an average of 36 months of treatment, the annual relapse rate decreased from 2.8 to 0.5 and the mean EDSS score remained constant at 1.4. The EDDS is a scale used for rating the level of physical disability ranging from 0 - no disability to 10 - maximum disability.

    Clinical side effects were recorded in 52 cases but these were mainly transient, although 3 stopped the treatment and a number of others either changed drugs or altered their doses. 24 also had reduced white blood cell count but this was also transient in 22 cases.

    The authors' encouraging conclusion was that the treatment was generally well tolerated and it reduced the relapse rate and the progression of the disease in most cases.

    The study was reported in the December 2005 edition of The Italian Journal of Neurological Science (Neurol Sci. 2005 Dec;26 Suppl 4:s183-6.)