Foyle Branch News & Research 2002
Items posted before 2003
- The needs & experiences of caregivers of local persons with MS
- Is there a need for palliative care for persons with severe MS?
- Childhood MS
- Lung Cancer Threat from Cannabis Smoking
- Controversial claim that MS could be a sexually transmitted infection
- J K Rowlings donates £500,000 to MS research in Scotland
- Claim that new blood test may be effective in diagnosis of MS
- More on UK Cannabis Trials
- Alternative Therapies
- Could curry powder help in MS?
- New stem cell transplant treatment shows promise
- Trials to start on promising new protein based treatment in Australia
- Claim that Provigil is an effective & safe treatment for MS fatigue symptoms
- MS patients in GB to get access to beta interferon
- Remyelination Research
- Health Insurance Woe
- Canada legalises the medical use of cannabis
- The Science Shop, (Magee Campus, University of Ulster)
- Queen's University Research Project
- University of Ulster Research Project
- Chronic Pain
Items posted before 2003
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THE NEEDS & EXPERIENCES OF CAREGIVERS OF LOCAL PERSONS WITH MS
L McKeown, A Porter-Armstrong & D Baxter of the Rehabilitation Science Research Group at the University of Ulster researched the needs and experiences of caregivers of persons with MS using a focus group approach. Four focus group interviews were conducted with caregivers of persons with MS from Northern Ireland & County Donegal. An experienced focus group moderator convened each interview. Each group met once for approximately 2 hours. Sessions were audiotaped and transcribed. Content analysis was used to analyse the qualitative data. A summary of the key themes emerging from the focus groups was forwarded to each caregiver and they were asked to comment on the accuracy of the researchers' interpretation of the interviews. A total of 17 family caregivers participated in the interviews. The research showed that many caregivers carry the main responsibility of care alone. Some caregivers reported feeling socially isolated and receiving little support from their family, friends and community organisations. Many experienced major difficulties accessing appropriate, timely, quality services for the person they care for. Those who have been providing care for long periods of time reported how this had a detrimental impact on their own physical & psychological well-being. A recurrent theme was that caregivers were uplifted by the positive attitude of the person they cared for.
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IS THERE A NEED FOR PALLIATIVE CARE FOR PERSONS WITH SEVERE MS?
Palliative care is a speciality that cares for people with advanced, life-threatening conditions. It supports patients and families by providing help with managing symptoms, promoting patient choice towards the end of life and managing bereavement. The UK MS Society is providing £300,000 funding to a research team at King's College, London. Additional funding is being provided by King's College Hospital NHS Trust. The research will identify what services currently exist in SE London and what people affected by MS and healthcare professionals working with them feel is important. The ultimate aim is to develop an effective model of good practice in London and to influence the development of similar services across the UK and world-wide. Further information is available on the MS Society web-site.
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CHILDHOOD MS
MS has traditionally been seen as a disease that affects people, a majority of whom are female, mainly between the ages of 20 and 40. In recent years much younger people have been diagnosed and researchers in America and Canada have begun to investigate the onset, diagnosis and course of the disease among children as young as four. It is estimated by researchers that the incidence among children in the USA could be as high as 6% of the number of adults affected. It is not known whether drugs used with adults would be effective or safe to use with children.
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LUNG CANCER THREAT FROM CANNABIS SMOKING
The British Lung Foundation has issued a strong warning about the effects of smoking cannabis. A report claims that smoking 3 cannabis joints a day causes the same damage to the lining of the airways as 20 cigarettes. The report also claims that, when cannabis and tobacco are smoked together, the effects are dramatically worsened. Apparently evidence shows that tar from cannabis cigarettes contains 50 per cent more carcinogens (cancer-producing agents) than tobacco. Further information and the full text of the report A Smoking Gun can be accessed on the Foundation's website.
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CONTROVERSIAL CLAIM THAT MS COULD BE A SEXUALLY TRANSMITTED INFECTION
An article by C H Hawkes of the Institue of Neurology in London published in the Journal of Neurology, Neurosurgery & Psychiatry raises the question of whether MS could be a mainly sexually transmitted infection. The proposal is based on a review of a wide range of previously published studies into the incidence of MS. Critics of the suggestion insist that no research has been conducted to investigate any link with sexually transmitted disease and point out that the studies referred to were not designed to establish evidence for or against but to investigate different aspects of MS.
Webmaster's comment: It is difficult to understand how this could be presented as a serious suggestion as many sexually inactive and/or monogamous people contract MS. C H Hawkes has informed the MS Society that his paper was presented to professional researchers at a research forum and was not intended for public attention.
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J K ROWLINGS DONATES £500,000 TO MS RESEARCH IN SCOTLAND
J K Rowlings is patron of the MS Society in Scotland. Her mother, who suffered from MS, died at the age of 45. According to a report in The Scotsman, the multi-millionaire Harry Potter author has donated £500,000 towards a £1,000,000 research programme in Scotland.
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CLAIM THAT NEW BLOOD TEST MAY BE EFFECTIVE IN DIAGNOSIS OF MS
According to an earlier Reuters report, researchers at Florence University have developed a simple blood test that may be effective in diagnosing MS. If its effectiveness is confirmed it could eventually replace costly MRI scans as a diagnostic tool although MRI scans would, presumably, continue to be employed as an important research tool.
Now, according to a July 2003 report in The New England Journal of Medicine, an important new study by researchers at the University of Innsbruck in Austria claims that a blood test for two specific antimyelin antibodies that attack myelin proteins may predict the progression of MS. Patients who possessed the two antibodies had relapses more often and earlier than those who didn't. The researshres concluded that analysis of antibodies in patients with a clinically isolated syndrome is a precise method for the prediction of early conversion to clinically definite multiple sclerosis. If replicated and confirmed, the tests might not only help in the diagnosis of MS, but might also assist in identifying those whose disease is likely to progress quickly and those who would benefit from early intervention.
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MORE ON UK CANNABIS TRIALS
We reported some time ago that clinical trials of cannabis-based medicines involving patients suffering from MS, spinal cord injury and other forms of severe pain are taking place under government licence. If successful they could lead to cannabis-based drugs being made widely available within three years. Further information at MS Society web-site UK MS Society webpage GW Pharmaceuticals, one of the companies involved, has developed a method of administering the drug through an under-the-tongue spray and is using this in its trials. The company is optimistic that this will prove to be an effective and safe way of delivering the drug should the trials result in the licensing of cannabis based drugs.
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ALTERNATIVE THERAPIES
Recent times has seen increasing interest in alternative therapies, such as acupuncture, aromatherapy, biofeedback, chiropractice, herbal medicine, they must consult a doctor before considering this "unproven" therapy. homeopathy, hypnosis, hypnotherapy, iridology, naturopathy, reflexology, relaxation techniques, traditional Chinese medicine, yoga, "touch therapy," and various schools of massage, among others. Some alternative therapies can contribute to general health and well-being. Others can be damaging or toxic. The American National Multiple Sclerosis Society website contains useful advice and background information for any person considering an alternative therapy on a page entitled Clear Thinking About Alternative Therapies
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COULD CURRY POWDER HELP IN MS?
There are reports (end of April 2002) that a university research team in America has found evidence that curcumin, an ingredient in tumeric curry powder, appears to have a very beneficial effect on the progression of a MS like condition in mice. Further research needs to be conducted.
Webmaster's comment: Further information will be posted if available. Even if confirmed in mice, it would still be a long way from human trials and acceptance as effective treatment for MS.
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NEW STEM CELL TRANSPLANT TREATMENT SHOWS PROMISE
A new treatment that involves removing stem cells from the patients' blood, killing the cells that are working against the body's immune system and then returning the healthy cells back to the body has been used on 26 patients with severe progressive MS according to a report of research presented at the American Academy of Neurology's 54th Annual Meeting in Denver on 16 April 2002. Dr Kraft of the University of Washington Medical Center reported that after the treatment, known as autologous stem cell transplantation, 20 patients were stable and 6 showed some degree of mild improvement. Their results were followed for an average of 14.2 months. At one year after the transplant, only three patients had new brain lesions, which are a result of MS disease activity. According to Dr Kraft, only two of the patients needed to take MS disease-modifying drugs since the transplant. However, some patients had complications following the procedure. One patient, who was the only patient to receive one form of an immunosuppressive drug used in the study due to a reaction to the other form of the drug, developed viruses that can affect transplant patients and died several weeks later. Another patient developed Guillain-Barre syndrome and pneumonia 17 months after the transplant. And one patient had a fever with no known cause soon after the transplant and, as a result, worsened by one point on the disability scale. Dr Kraft said the treatment needs to be studied on more patients to confirm its effectiveness and studies are also needed to determine its long-term effect.
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TRIALS TO START ON PROMISING NEW PROTEIN BASED TREATMENT IN AUSTRALIA
A company called CBIO Ltd in Australia has succeeded in synthesising a protein that occurs naturally in pregnant women. The protein is believed to be responsible for the reduction in autoimmune symptoms that occurs during pregnancy. It is called EPF (Early Pregnancy Factor). It appears to dampen down the autoimmune activity that is characteristic of MS and other autoimmune diseases. Trials on animals show promising results and it is planned to start trials on humans next year.
Webmaster's Comment: It is to be emphasised that whilst the animal trials are encouraging the outcome of the human trials must be awaited before any conclusion is reached on its effectiveness. It is estimated that it could take up to ten years for the treatment to be made available should the results of trials prove positive.
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CLAIM THAT PROVIGIL IS AN EFFECTIVE & SAFE TREATMENT FOR MS FATIGUE SYMPTOMS
According to a report in the February 2002 issue of the Journal of Neurology, Neurosurgery, and Psychiatry, doctors from Ohio State University in Columbus found that MS patients treated with a drug called modafinil got significant relief from fatigue symptoms without serious adverse reactions. Modafinil is produced by a Pennsylvania-based company called Cephalon Inc. under the name Provigil. It is used to treat excessive daytime sleepiness in patients with narcolepsy. The findings were based on a limited two week study of 72 patients with MS related fatigue symptoms. The doctors found that a 200 mg dose appeared to produce the best results for most patients. Apparently an increasing number of doctors are prescribing the drug for MS patients in America although it is not an approved treatment.
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MS PATIENTS IN GB TO GET ACCESS TO BETA INTERFERON
The Department of Health has agreed a scheme under which multiple sclerosis patients can receive the drugs beta interferon and glatiramer acetate if assessed as likely to benefit by a consultant. These drugs can slow the progression of MS but most of those who could benefit have been denied access to the drugs following controversy over their effectiveness and cost. An agreement has been reached with the companies that produce the drugs on a scheme under which the government will pay for the drugs if they prove effective. If not payment to the companies will be reduced on a sliding scale. The scheme has been welcomed by the Multiple Sclerosis Society. It is estimated that it could take eighteen months for all assessments to be completed.
Webmaster's Comment: Separate arrangements applied in Northern Ireland under which persons whose consultant assessed them as likely to benefit from beta interferon were given access to the drug. Payment arrangements will now be covered by the GB agreement.
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REMYELINATION RESEARCH
When MS strikes, cells from the immune system attack myelin, the substance that surrounds and protects the central nervous system. If damage is severe, myelin can be damaged permanently leaving people with long-term disability. Researchers have recognised that some remyelination occurs in areas of MS damage. There are two basic approaches to recent research into the possibility of treatment through remyelination.
- One is to find ways to turn the progenitor cells - also known as stem cells - that already exist in the adult nervous system into myelin-making cells. Click here for further information on this page
- The second is to introduce progenitor cells from an external source or from another area of a person's own body using surgical or transplantation techniques.
Remyelination Using Body's Own Stem Cells
The MS Society of Canada recently reported a large funded study involving a team of neurologists and scientists to try to find out if the body's own cells can be transformed into a cellular repair team to mend damage caused by multiple sclerosis. The multi-centre, multi-disciplinary project is coordinated by Dr. Jack Antel of McGill University and involves leading researchers at centres in Canada and the United States. Further information at the Canadian MS webpage.
Transplant Surgery Attempts to Repair Myelin in Woman with MS
According to a press statement from the Yale School of Medicine, researchers at the university have performed the first central nervous system transplantation to try to repair the myelin-forming cells in a woman with multiple sclerosis (MS). "The purpose of this experiment was to determine whether the procedure is safe and has enough promise to justify future research," said principal investigator Timothy Vollmer, M.D., associate professor of neurology at Yale School of Medicine.
The myelin in the brain and spinal cord are made by cells called oligodendrocytes, which are attacked and destroyed in MS. The myelin in the peripheral nerves is made by Schwann cells. Studies show that Schwann cells can replace oligodendrocytes and remyelinate the demyelinated nerves in the brain and spinal cord in animals. Vollmer said he and his team want to determine whether the transplant of Schwann cells into the human brain is safe, and whether the Schwann cells actually survive in the adult human brain of a patient with MS. They also want to find out if the Schwann cells are able to wrap myelin around or restore the nerve fibres in the brain, restoring normal function The procedure took place on 17 and 18 July last year. In the first 24 hours, the team isolated the Schwann cells from the sural nerve, which was removed from the patient's ankle. A neurosurgery team led by Dennis Spencer, M.D., then performed stereotactic surgery on the patient, using an MRI machine to guide a needle very accurately through the frontal lobe and inject the Schwann cells into a previously identified MS lesion. Vollmer said the patient will now be studied using a number of techniques, including neuroimaging and functional assessments for six months. At the end of six months, the team will use the stereotactic procedure to take a small biopsy to determine whether the cells survived and whether they made any myelin.Webmaster's Comment: It must be stressed that there is currently no way of knowing whether this potentially high-risk procedure will be safe or effective for treating multiple sclerosis. The outcome is awaited with great interest.
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Health Insurance Woe
Insurers Friends Provident refused to pay a 35 year old woman from Glasgow on a critical illness policy she had taken out before she was diagnosed with MS because she failed to reveal a visit to her doctor three years earlier about a tingling sensation in her eyes. The Ombudsman supported the insurer. (Sunday Times 11/02/2001)
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CANADA LEGALISES THE MEDICAL USE OF CANNABIS
David Spurgeon of Quebec reported in the BMJ in July that from the end of the month, Canada would become the first country to allow the growth and personal use of marijuana by people with terminal illness and serious medical conditions, including people with MS. According to the report, the director general of the federal health department's office of controlled substances emphasised that the government was not encouraging the use of cannabis and would not provide it but would allow it to be grown and used under certain conditions by people for whom conventional treatments do not work and whose doctors have decided that its medical benefits outweigh its risks. The report also notes that the past president of the Canadian Medical Association said that the association does not support the move and believes it is premature for the health department to expand broadly the medical use of marijuana "before there is adequate scientific support." He thinks that most doctors will be reluctant to participate in the process devised by the Canadian government.
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THE SCIENCE SHOP, (MAGEE CAMPUS, UNIVERSITY OF ULSTER)
A research study into the needs of people with MS in Derry was recently completed by Rosemary McIlvar under the auspices of The Science Shop (Magee Campus of University of Ulster). She interviewed Foyle Branch members as well as professionals. She identified gaps in current service provisions in four main areas and made recommendations on these. her report recommends that gaps identified be addressed by
- the provision of a central advice/therapy centre to serve as a central point of contact for information, advice and emotional support
- the establishment of MS specialist nurses throughout the province and
- the development of awareness among healthcare professionals of the importance of recognising the support needs of their patients at the time of and after diagnosis and of introducing them to a specialist nurse and or hospital social worker.
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QUEEN'S UNIVERSITY RESEARCH PROJECT
Northern Ireland has one of the highest rates of MS in the world, with a prevalence of nearly 1 in 500. It is estimated that almost 3,000 people in Northern Ireland have MS with many more people, families, friends and carers affected by the condition. There are a number of statutory and voluntary organisations in Northern Ireland providing health and social services for people affected by MS. However, there has been no overall evaluation of the uptake, accessibility or value of these services. Neither has there been any widespread assessment of the unmet needs of people living with MS. The MS Society, Northern Ireland, wishes to establish the level of service provision for people with MS in order to influence the future development of appropriate services and is funding a large scale research project into the level of service provision across Northern Ireland for persons with MS The Society awarded Prof Phillip Reilly at Queens University in Belfast £21,000 to undertake this work for one year. Computer-assisted interviews will be used to focus on met and unmet need, sources of assistance and satisfaction with aid provided. Carers views will be sought on service provision and the costs and consequences of caring. The role and contribution of statutory and voluntary organisations will be explored using a postal questionnaire with follow-up by telephone. The project title is "Multiple Sclerosis in Northern Ireland - Do needs and provision correspond for patients and carers?"
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UNIVERSITY OF ULSTER RESEARCH PROJECT
Researchers at The University of Ulster have been awarded £500,000 by the NI MS Society for research to find new ways of helping people with MS cope with their disease. The project will research strategies and therapies to help people with MS deal with issues of incontinence, wound management and pain control. This is the largest research grant ever made in Northern Ireland by the MS Society. All of the money has been raised in Northern Ireland and it will be used to fund world-class research here in the Province to bring comfort and relief to people with MS. It is hoped that this project will have a positive impact on those who have to live with the dreadful condition of MS. The project has established a web page where further information can be accessed.
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CHRONIC PAIN
US Yale University neurologist Dr Rizzo said his large-scale survey of more than 7,000 MS patients showed that most MS patients were under-treated and often unrecognised for pain management. His findings were recently presented at a Neuroimmunology Symposium. He explained that MS patients commonly experience migraine headaches, eye, leg, facial, bladder and skin pain, muscular spasms and prickling or tingling sensations of the skin and the pain is often chronic. His study showed that typical pain medications do not work in chronic pain which causes "miswiring," leading to abnormal pain pathways. He argued that MS patients need to be treated with medications such as a class of antidepressants known as tricyclic antidepressants and anticonvulsants and that more than one medication or combination might need to be given in order to tackle the pain effectively. Some of the medications he found to be effective were gabapentin (Neurontin), lamotrigine (Lamictal), amitriptyline, the broad-spectrum anticonvulsant (divalproex) Depakote, topirimate (Topamax) and baclofen (Lioresal). (Note: these medications may have different brand names in the UK)