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Thousands of people are putting their health and life savings at risk to travel to private clinics around the world for unproven and potentially dangerous stem cell treatments, British experts said.

A panel of specialists highlighted individual clinics in Germany and China where so-called "stem cell tourists" go for unlicensed treatment, and said there may be up to 700 similar businesses globally offering unproven cell therapies.

Despite a lack of scientific evidence that such therapies work, patients whose lives are blighted with conditions like Parkinson's disease or childhood blindness are being lured into spending tens of thousands of dollars with little chance of success. "The patient is in danger of losing their life and health, needlessly traveling long distances away from home, friends and family, not having their condition improved, and potentially losing a large sum of money," said Chris Mason of University College London's (UCL) regenerative medicine bioprocessing unit.

The scientists cited one case of an Israeli boy who received a stem cell treatment in Russia for a spinal injury and subsequently developed multiple tumors.

In another case, they said, a 46-year-old woman was treated in Thailand for the autoimmune disease lupus. She later developed kidney failure and died from sepsis.

Stem cells are the body's master cells that give rise to many different tissues and blood cells. They are standard treatments for leukaemias and a few other genetic diseases, but their use in treating other conditions such as Parkinson's, spinal injury or optic nerve damage is as yet unproven.

The International Society for Stem Cell Research has previously warned of rogue stem cell clinics around the world seeking to exploit desperate patients oblivious to the risks.

The British experts said they had been prompted to speak out because of a flood of requests they get from patients who read about apparently dramatic cures on websites and in the media.

They said that while private clinics were not operating illegally, they were offering treatments that are unlicensed and in many cases untested, and advised patients to steer clear.

Treatments can cost around $30,000 a patient, they said, and in the absence of clinical trial data to support their work, clinics post patient testimonies on their websites from people who say they have been helped.

Health authorities in Costa Rica ordered the country's largest stem cell clinic to stop offering treatments in June, saying there was no proof they were effective.

Thailand and Mexico also offer stem cell treatments.

The British experts said they were particularly concerned about a firm in Germany called XCell-Center and a firm in China, Beike Biotechnology, which offers stem cell treatments for a range of conditions including brain injury, cerebral palsy, multiple sclerosis, spinal cord injury and optic nerve damage.

XCell said it would issue a statement on Wednesday about the experts' comments and Beike did not immediately respond to a Reuters request for a response.

"These companies do not offer licensed therapeutics, so it is something the patients themselves have to sign consent forms for," said Peter Coffey of UCL's ophthalmology institute, referring to the two named firms and others like them.

"The main issues around licensing a therapeutic is not just that it's safe... but also to show efficacy. None of these companies has ever been through that type of procedure."

Robert McLaren, a consultant at Moorfields Eye Hospital in London who was also on the panel, said there was "categorically" no evidence to date that stem cell therapies could effectively treat retinal or optic nerve conditions.

"Unfortunately we are dealing with patients who are completely desperate and willing to try anything," he said.

Source: Reuters © Copyright 2010 Thomson Reuters (03/09/10)

A woman with multiple sclerosis who attempted to reach the peak of Ben Nevis in a wheelchair has vowed to take on the mountain again – after being thwarted by a dead battery.

Sally Hyder, 48, from Edinburgh, made it halfway up – just over 2,000 feet – when she was forced to turn back due to the power failure.

And, although she managed to raise half of her £10,000 goal for chosen charity Canine Partners, Ms Hyder is determined to finish the challenge.

Canine Partners provides assistance dogs to disabled people, and 18 months ago Ms Hyder was given Harmony, who she says has changed her life.

She said her biggest wish would be to raise enough money to pay the charity back for Harmony – who cost £10,000 to train.

She said: “There is a huge waiting list for assistance dogs and I hope I can raise enough in my lifetime to allow someone else to have one.

“The effect Harmony has had on my life is indescribable, I no longer have to get people to pick things up for me and I can go out and meet people and lead my life as I knew it before the MS.”

‘Wistful’

“I was devastated on the day to have not reached the top but now I just feel rather wistful and completely determined to get to the top next time.

“I’m treating that one as a trial run, when I do it again in 2012 that will be the big one.

“We know what the problem was now, so next time I can plan for that.”

The team of three guides and Harmony the dog took 10 batteries with them – each weighing six and a half kilograms – which should have been enough to power the wheelchair for 140 miles.

But a problem with the circuit board meant the life of each battery was running down after virtually 10 minutes.

In her gruelling attempt to raise cash, she managed to break a record for being the highest climbing electric wheelchair user.

She said: “My goal initially was to get to the top, then it became about going as far as I could, and to have beaten a record makes me very happy.

“It was very challenging, there were several bogs that I got stuck in along the way and the terrain was very rough and bumpy.

“There was never a moment I considered stopping until I realised we had to.”

Ms Hyder was diagnosed with multiple sclerosis in 1989, aged just 27, but before then she was a keen hillwalker and had climbed a number of Munros.

In fact, in 1988 her now husband Andrew – who accompanied on her quest to conquer Nevis -  proposed to her at the base of Mount Everest during a climbing holiday in Nepal.

She said: “Andrew and my 18-year-old son Peter came with me and I could not have done it without their support.

“And the team I had with me were just amazing, every single member of staff from Canine came that day, and the momentum it brought me was enormous.”

Mrs Hyder has a number of fundraisers in the pipeline, including plans to sail down the Caledonian Canal next summer and abseiling on the Forth Road Bridge – which is proving more difficult to arrange because of her condition.

She is also writing a book, to be named Finding Harmony, which is due to be published by Harper Collins in February 2011.

It will tell the story of her life, including a final chapter currently being written about her Ben Nevis escapade.

Source: Deadline Press and Picture Agency (02/09/10)

Study indicates that neurologists’ apprehension regarding side effects will not stop them from prescribing new oral MS drugs, but concerns will likely relegate their use to second- or third-line therapy.

In a study published this week by Majestic Research, almost 60% of neurologists expressed unaided concern about the side effects/safety of oral MS therapies in development, including NVS’s Gilenia and MRK/EMD Serono’s cladribine.

Despite their concerns, the vast majority of neurologists expect to prescribe these drugs if they are approved, as the new oral MS therapies are expected to be highly efficacious and more convenient for patients than available injectable therapies. Data from the study suggests that new orals will steal share primarily from multiple sclerosis market leaders, including BIIB’s Avonex and TEVA’s Copaxone.

The study titled Event Pulse Preview: Multiple Sclerosis shows that 84% of neurologists expect to prescribe Gilenia for some MS patients if approved, but prescribing will likely be limited to second- or third-line therapy until concerns about safety and monitoring requirements are resolved. Jemma Lampkin, Director of Market Research, said, “Neurologists are clearly worried about the side effects that have come up in the clinical trials for these drugs in development, and the negative press regarding Tysabri’s PML cases over the past few years also seems to be a factor. Still, almost all of the neurologists in this study expect to prescribe Gilenia, so there is optimism regarding its potential.” The study suggests that Gilenia, which is expected to be approved in September 2010, could have a more significant impact than some have predicted.

Event Pulse Preview: Multiple Sclerosis includes analysis of a targeted Internet survey of 75 neurologists, 10 in-depth telephone interviews with pharmacy directors at major managed care organizations, and proprietary longitudinal treatment data from a panel of 200 neurologists spanning 2005-2010. Conducted in August 2010, the report takes an in-depth look at how new MS therapies will affect the multiple sclerosis market. In addition, Event Pulse Preview: Multiple Sclerosis evaluates uptake and use of recently approved Ampyra and Botox for MS. The qualitative portion also examines the current reimbursement climate for multiple sclerosis drugs as well as the anticipated response to new oral MS drugs among major managed care organizations.

About Event Pulse

Event Pulse is a syndicated report series that evaluates the impact of market events on physician treatment practices. This report series provides information on how changes such as new products, data, or guidelines fit into the treatment algorithm, impact current therapies, and change market dynamics.

Source: BusinessWire © 2010 BusinessWire (02/09/10)

The Canadian government will not fund a clinical trial of the so-called liberation therapy for multiple sclerosis at this time, Health Minister Leona Aglukkaq says.

Aglukkaq spoke to reporters in Ottawa on Wednesday, a day after a panel of North American experts announced they unanimously recommended against supporting a clinical trial of the treatment in Canada as yet.

Aglukkaq commissioned the expert panel's report from the Canadian Institutes of Health Research, which funds medical research, and the MS Society of Canada.

"I feel the most prudent course of action at this time is to accept the recommendation of the country's leading researchers," Aglukkaq told a news conference.

Liberation therapy is based on an unproven theory of chronic cerebrospinal venous insufficiency (CCSVI) — put forward by Italian doctor Paolo Zamboni — that blocked veins in the neck or spine are to blame for MS. Zamboni proposed treating multiple sclerosis by inflating small balloons to open up veins.

Some Canadians are spending thousands of dollars to seek the experimental treatment overseas.

CIHR head Dr. Alain Beaudet said experts weren't convinced Zamboni's procedure works and is safe. Beaudet said he advised Aglukkaq that it was too early to back clinical trials.

Safety questions
In June, the MS society and its U.S. counterpart awarded a combined $2.4 million in research grants to diagnostic studies aimed at testing whether Zamboni's theory is correct, by checking for abnormal blood flow in the veins in people with MS and healthy controls using ultrasound, MRI or catheters with dye. The research projects are expected to take two years.

Yves Savoie, the president of the MS Society of Canada, said Wednesday that his organization would monitor the results of the studies.

If they suggest there is a clear link between occluded veins and MS, then the society will recommend that a clinical trial testing vein opening be started quickly.

Beaudet said Zamboni's treatment is currently too risky to try in Canada.

"Any procedure where you inject a catheter in a vein, where you compress the vein, where you risk damage to the internal sheath of the vein, is not without risk."

But MS patient Tim Cant of Whitehorse, who travelled to India to undergo liberation therapy earlier this year, said he and others have seen their conditions improve.

"They talk about us being one of the best medical systems in the world," Cant told CBC News on Wednesday. "Why is it so many Canadians are now travelling to other places in the world to get this operation done?"

Cant, who was diagnosed with MS three years ago, said if politicians could experience first-hand the physical and mental pain that multiple sclerosis inflicts on people, they would fund clinical trials without hesitation.

Objective measurements
To show liberation therapy works would require objective measurements, such as changes in muscle strength, a reduction in the frequency of relapses of MS symptoms or differences in MRI brain scans, Beaudet said.

Aglukkaq agreed that if evidence from the research projects supports the launching of a clinical trial, then the federal government would allow a pan-Canadian study of the ballooning therapy, called angioplasty, on patients.

Agulukkaq said she doesn't know anyone with MS but has heard anecdotes of Canadians who travelled for the treatment at their own expense.

For months, the federal Liberal position has been that the government should fund research to figure out whether the treatment is of benefit to Canadian patients or not, Liberal Leader Michael Ignatieff said Wednesday at the party's caucus meeting in Baddeck, N.S.

Ignatieff said it's not appropriate for politicians to say which treatment is going to work, but for doctors and scientists to do so, assisted by the federal government.

Saskatchewan Premier Brad Wall has said his province would fund a clinical trial into the procedure if it receives a research proposal for one.

People with MS say they will return to Parliament Hill on Sept. 22 to urge the federal government to listen to their calls to offer the procedure in Canada.

Source: CBC News © CBC 2010 (02/09/10)

Author JK Rowling has donated £10m to the University of Edinburgh to set up a multiple sclerosis research clinic.

The Harry Potter writer, whose mother Anne had the disease and died aged 45, said the funds were to help attract top researchers to seek a cure for MS.

The Anne Rowling Regenerative Neurology Clinic will aim to place patients at the heart of the research process.

Rowling stood down as patron of the MS Society Scotland last year saying the charity was split by internal rows.

Work at the new clinic will also focus on other degenerative neurological conditions, including Alzheimer's, Parkinson's disease, Huntington's disease and Motor Neurone Disease.

Multiple sclerosis affects about 100,000 people in the UK, while Scotland has one of the highest rates of MS in the world, with some 10,500 people with the condition.

Ms Rowling said: "I cannot think of anything more important, or of more lasting value, than to help the university attract world-class minds in the field of neuroregeneration, to build on its long and illustrious history of medical research and, ultimately, to seek a cure for a very Scottish disease."

She added: "I have just turned 45, the age at which my mother, Anne, died of complications related to her MS.

"I know that she would rather have had her name on this clinic than on any statue, flower garden or commemorative plaque, so this donation is on her behalf, too; and in gratitude for everything she gave me in her far-too-short life."

The clinic will be based in a purpose-built facility at the university.

Academics will work closely with researchers studying neurodegenerative disorders already based at the university, as well as training a new generation of researchers.

The university set up a Centre for Multiple Sclerosis Research in 2007, which has also received support from Rowling.

Professor Charles ffrench-Constant, the centre's co-director, said: "We can only find improved treatments if we can truly understand diseases and the biological processes behind them.

"The Anne Rowling Regenerative Neurology Clinic will enable us to carry out studies that can inform laboratory research and, in turn, this knowledge can be translated back into treatments for patients."

Source: BBC News © British Broadcasting Corporation 2010 (31/08/10)