GPs lack confidence in assessing and referring people with symptoms of MS
People experiencing the first signs and symptoms of neurological conditions like MS are waiting too long to see an appropriate specialist, according to over 1,000 GPs surveyed across the UK.
Vitamin D - new guideline recommends daily intake of 10 micrograms for the general population
A government report published today recommends that everyone should aim to consume 10 micrograms of vitamin D (400 IU) each day to ensure healthy bones and muscles.
Daclizumab (Zinbryta) gets European licence for relapsing forms of multiple sclerosis
The European Commission (EC) has granted marketing authorization for daclizumab (Zinbryta) for the treatment of adults with relapsing forms of multiple sclerosis. This follows a recommendation from the European Medicines Agency in May that a licence should be granted.
Major national survey of neurological conditions launches today
A national survey of people living with a neurological condition, including multiple sclerosis, launches today. The Neurological Alliance, representing 80 organisations working across England to improve life for people living with a neurological condition, is running their second neurological patient experience survey.
New report calls for neurology care to be delivered closer to home
The Thames Valley Strategic Clinical Network launches a new report calling for improvements in neurological services provided in the community.
Research shows longer term benefits from stem cell therapy
Results from two trials of an aggressive form of stem cell therapy indicate the treatment may have long-term benefits.
Disappointing results from opicinumab (anti-LINGO-1) study
Preliminary results announced in a company press release report that opicinumab (also known as anti-LINGO-1 and BIIB033) failed to improve disability, assessed by a combination of physical and cognitive measures.
Gene discovered that can increase risk of rare form of progressive MS
Researchers in Canada have identified a gene that appears to significantly increase the risk of developing a rare rapidly progressing form of MS.
Fasting-mimicking diet studied as potential MS treatment
A diet that mimics the effects of fasting may have a role in managing MS according to new research.
Study finds poor integration between neurology and palliative care teams
A study has found wide variation in how much palliative care and neurological teams provide joined-up services at eight sites in England and Wales. There was least coordination in services for people with MS.
Fatigue and lack of support affect employment with MS
An international survey shows that too many people with MS are leaving employment earlier than necessary.
Daclizumab moves closer to approval for relapsing MS
The European Medicines Agency's Committee for Medicinal Products for Human Use has recommended that a licence should be granted for daclizumab for the treatment of relapsing MS.
Calling all MS health professionals: enter or nominate colleagues for the 2016 QuDoS in MS awards!
We're pleased to announce that, after a hugely successful first year, the QuDoS awards, highlighting innovation and excellence in MS services, are now open for nominations for 2016.
MS Trust report finds people with progressive MS feel like they're getting a second class service
According to a new report published today by the MS Trust, growing pressures on NHS services mean people with progressive MS get much less support from specialist health professionals than people with relapsing remitting MS. As well as seeing health professionals less frequently, many people with progressive MS report being ‘abandoned’ by specialist services just as they enter the progressive phase of the disease, marked by complex symptoms and increasing disability.
Drinking coffee may reduce the risk of developing multiple sclerosis
Researchers have reported that people drinking more than 900 ml of coffee each day, roughly equivalent to three average-size mugs, are up to 30% less likely to develop multiple sclerosis than people who drink no coffee.
Young people with MS being cared for in older people’s care homes
Hospice and neurological rehabilitation charity Sue Ryder estimates that a lack of dedicated neurological care and rehabilitation services in Scotland means that up to 1,000 people are being cared for in inappropriate settings.
Recommendations for minimising the risk of PML with Tysabri.
Recommendations from the EMA to reduce the risk of PML for those at high risk taking the multiple sclerosis disease modifying drug Tysabri (natalixzumab) suggest increasing the frequency of MRI scans.
Parliamentary committee issues wake-up call over neurology services
Last week the Public Accounts Committee has published its report into services for people with neurological conditions. The report by the influential parliamentary committee recognises the ongoing challenges facing neurology services finding that, despite a similar review in 2012, there is still “wide variation across the country in access, outcomes and patient experience.”
Participants still needed for MS-SMART secondary progressive MS trial
The MS-SMART trial will look at drugs that may limit the progression of MS. Researchers have been recruiting people with secondary progressive MS from across the UK, but are still in need of more people to volunteer to take part.
Encouraging results from ozanimod drug trial
Ozanimod is a drug that works in a similar way to Gilenya (fingolimod) but with fewer side effects according to recently published research.
Drug for primary progressive MS takes a step towards licensing in the USA
Ocrelizumab has become the first new medicine for MS to be granted a special status that could speed up approval by the American drug regulators
New campaign launched to legalise cannabis for medicinal use including for multiple sclerosis
News item on campaign to legalise medicinal cannabis.
Phase II study of epilepsy drug shows promise in optic neuritis
Results of a small study just published suggest that the epilepsy drug phenytoin may have a neuroprotective effect and could potentially be beneficial in people with MS.
MS Trust welcomes Panorama stem cell report, announces plans to audit stem cell services
Last night (Monday 18 January 2016) you may have seen that BBC1 broadcast an episode of Panorama called “Can you stop my multiple sclerosis?”. The programme explored the use of stem cell therapy at Sheffield Teaching Hospitals to treat people with multiple sclerosis. The MS Trust was glad that the programme took a considered, unsensationalist approach to what has sometimes proved to be a controversial issue.
Why the MS Trust is not endorsing the new NICE Quality Standard for MS
The MS Trust was closely involved in the development process, contributing to all stages of scoping and consultation. We welcome elements of the standard, in particular statements 2, 3 and 6 which, if implemented, will be a real step forward in ensuring that people with MS get the specialist input they need (see below). But, after careful consideration, we decided we could not endorse the final document.
MS Trust congratulates MS neurologist for New Year’s honour
Prof Alastair Compston has been awarded a Commander of the Order of the British Empire (CBE) in the New Year’s Honours.
Small study shows high doses of vitamin D may modify the immune system in MS
Results from a small study just published has demonstrated taking 10,000 IU of vitamin D appears to be safe for people with MS and could reduce the proportion of the immune cells that are thought to drive MS activity.
Band 8 Lead MS Nurse on NHS Jobs
Plymouth Hospital NHS Trust is currently advertising for a Band 8 Lead MS Nurse on NHS Jobs. A great opportunity working as a member of the MS team, the post holder will provide leadership to the MS nurses and look for new and innovative ways to meet the increasing demands of the service.
Judge rules on withdrawing treatment
A judge from the Court of Protection has ruled that doctors can withdraw treatment from a woman with MS described as being in a "minimally conscious state" and having little awareness of the outside world.
NHiS and MS Trust report highlights the costs of emergency hospital care for people with MS
Many people with MS have to go to hospital for emergency treatment for preventable conditions, according to a new report published today by the MS Trust and NHiS.
Large-scale MS Trust evaluation reveals that vitally important MS services face critical challenges
A major new MS Trust report reveals that vital MS services face increasing pressures which could lead to inequities in care.
Revealed: the winners of the inaugural QuDos awards for MS services
MS specialist nurses, neurologists, allied health professionals and multi-disciplinary teams from across the UK have been recognised in the first ever QuDos awards for quality in the delivery of MS services.
Tysabri unsuccessful in secondary progressive MS trial
Preliminary results announced in a press release report that treatment with Tysabri did not slow down the gradual increase in disability experienced by people with secondary progressive MS.
ECTRIMS 2015 round up
Overview of some of the research highlights reported at the ECTRIMS 2015 conference in Barcelona.
Drug for primary progressive MS shows positive result
According to topline results released by the manufacturer, ocrelizumab reduced the risk of increased disability in primary progressive MS by 24% compared to placebo. In relapsing remitting MS, ocrelizumab reduced the number of relapses by 50% compared to interferon beta 1a (Rebif)
Neurologists move toward earlier treatment for MS
People with relapsing remitting MS should be considering starting disease modifying treatment as early as possible and be active partners in treatment choices according to newly revised guidelines published today by the ABN.
Smoking leads to earlier transition to secondary progressive MS
A study has reported that smokers who continued to smoke after being diagnosed with relapsing remitting MS reached the transition to secondary progressive MS more quickly than those who gave up smoking.
Take part in a survey on Living with Medicines
The survey will take 10-15 minutes to complete and all responses are anonymous.
Latest figures showing variation in access to neurology services come as no surprise
Latest figures showing variation in access to neurology services come as no surprise
Link between vitamin D and MS onset
People with genes that cause them to have low levels of vitamin D are more likely to develop MS according to new research
PML risk with Gilenya prompts update to US prescribing information
The FDA has announced that it will update the information for Gilenya (fingolimod) after two possible cases of PML in people with MS taking this disease modifying drug in the USA.
Draft recommendations on vitamin D published
The Scientific Advisory Committee on Nutrition (SACN), an independent body which advises the Government on diet, nutrition and health matters, have published their draft recommendations on vitamin D which are now out for public consultation until 23 September.
Report shows people with advanced MS miss out on access to palliative care services.
Triggers for palliative care, a report by Marie Curie, suggests that people with neurological conditions including MS are missing out on care that can make a real difference to quality of life. It shows that there is limited understanding from both health professionals and the public of what palliative care can offer, who can benefit and when the time is right time to access this holistic care.
Two treatments identified which may have a role in myelin repair
Laboratory studies have shown two treatments currently used to treat skin conditions may have the potential to be developed into therapies to repair myelin in people with MS. However, this is very early research in animals and human cells, so the press coverage reporting the treatments as a 'cure', or 'reversing' or 'stopping' MS is somewhat premature.
Positive interim results from major UK study on MS drugs
Results of the analysis of the 6 year data of the Department of Health (DH) MS Risk-sharing Scheme (RSS), published in the Lancet Neurology today, show that the disease modifying drugs Avonex, Betaferon, Copaxone and Rebif are cost effective and are clinically effective in reducing the progression of the disease in people with relapsing remitting multiple sclerosis (MS).
MS- SMART- secondary progressive MS trial starts recruiting
Researchers have started to recruit 440 people with secondary progressive MS across the UK for a trial that will look at drugs that may limit the progression of MS.
Stem cells - hope for the future?
In the last couple of days, several of the national newspapers have reported "miraculous" results from stem cell treatments for people with MS. Headlines included "Stem cell reboot has MS patients dancing", "'Miracle' stem cell therapy reverses multiple sclerosis". But what are the facts behind these headlines?
Research into MS and other health conditions published
Having multiple sclerosis unfortunately doesn't prevent people from developing other health conditions and these may have an impact on MS symptoms and treatment. An international study is trying to identify the most common conditions (comorbidities) experienced by people who have MS.
Stomach bacteria might protect against MS
A study in Australia suggests that women infected with the common stomach bug Helicobacter pylori (H.pylori) have a lower risk of developing multiple sclerosis.
MS patients are 'invisible' in most Clinical Commissioning Groups (CCGs)
The Invisible Patients, a new report published today by the Neurological Alliance has found that people with MS in England are unknown to their local Clinical Commissioning Groups. The Neurological Alliance sent Freedom of Information requests to all CCGs, to ascertain how aware they are of neurological conditions in their patch.
Plegridy will be available on the NHS in Scotland
The Scottish Medicines Consortium (SMC) has approved peginterferon beta-1a (Plegridy) as a treatment for relapsing remitting multiple sclerosis on the NHS in Scotland
Encouraging results from stem cell trial
Interim results from a five year stem cell study suggest the treatment could eventually be an effective way to manage relapsing remitting MS.
Fingolimod (Gilenya) not effective in primary progressive MS
Fingolimod (Gilenya) was no better than placebo at reducing measures of progression in people with primary progressive MS according to information announced today.
Tenth drug for relapsing remitting MS now available in the UK
Dimethyl fumarate was approved by NICE (National Institute for Health and Care Excellence) in August. Following a recommendation by NICE, the NHS in England and Wales has three months in which to prepare for prescribing the drug.
PML case reported for dimethyl fumarate (Tecfidera)
A case of PML (progressive multifocal leukoencephalopathy) has been reported in a person who had been taking dimethyl fumarate (Tecfidera).
No link between vaccination and risk of MS
This new study found no long term association between any vaccines, including hepatitis B and HPV (human papillomavirus), and an increased risk of developing MS, for up to three years following vaccination.
New NICE Guideline information for the public now available
Following the recent publication of the NICE Guideline for the management of MS in primary and secondary care (Clinical Guideline 186), NICE have now published their information for the public.
Fingolimod (Gilenya) eligibility extended in Scotland
The Scottish Medicines Consortium (SMC), which issues guidance on whether treatments should be funded by NHS Scotland, has announced that fingolimod can now also be prescribed for people with rapidly evolving severe relapsing remitting MS (RES RRMS).
New NICE Guideline for MS published today
Today sees the publication of the first revision since 2003 of the NICE Guideline for the management of MS in primary and secondary care (Clinical Guideline 186).
People with MS are encouraged to get seasonal flu jab
The seasonal flu vaccination is now available to people who fall into at-risk groups, which includes anyone with a neurological condition such as multiple sclerosis, those over 65, and the main carers of a disabled person.
Amantadine (Symmetrel, Lysovir) may be out of stock due to manufacturing delays
Anyone currently taking amantadine, sometimes prescribed for fatigue in MS, may want to check with their pharmacist to ensure there will be stocks ready for their next prescription.
Fampridine not recommended for the NHS in Wales
The Welsh drug regulator has announced that fampridine (Fampyra) is not a cost effective treatment for MS-related walking problems.
Manifesto 2015: a call to action for neurology.
With less than a year to go before the next general election, the Neurological Alliance has launched its manifesto. This sets out some key policy asks that are applicable across the full spectrum of neurological conditions including MS.
Dimethyl fumarate (BG-12, Tecfidera) - NICE confirms approval in final guidance
Dimethyl fumarate (BG-12, Tecfidera) will start to be available on the NHS in England and Wales from November following final guidance from NICE (National Institute for Health and Care Excellence).
Sativex approved for use on the NHS in Wales
Sativex (nabiximols) has been recommended by the All Wales Medicines Strategy Group (AWMSG) for use within NHS Wales for the treatment of MS-related spasticity.
MS Trust congratulates Stephanie Millward on her latest medal haul
Swimmer with MS wins 7 medals at the IPC Swimming European Championships.
The right words? - receiving a diagnosis of MS
A recent article in the Irish Times explores the role of language in the diagnosis of life-challenging conditions including multiple sclerosis.
Could HIV drugs help treat or prevent MS?
A large study has shown that people with HIV appear to be at a significantly lower risk of developing MS.
Plegridy approved in Europe
Peginterferon beta 1a (Plegridy), a new treatment for relapsing remitting MS, has been licensed by the European Commission.
New report on bowel management in MS launched on Bowel Independence Day
The MS Trust has worked together with other organisations to ask people with MS and MS specialist nurses how bowel problems are currently being managed and how this can be improved. The report is published today.
Fingolimod (Gilenya) licence extended
The European Commission has approved the extension of the licence for fingolimod to allow greater access to the drug for people with highly active relapsing remitting multiple sclerosis.
A backward step for MS services: the draft NICE MS Clinical Guideline
The MS Trust is concerned that recommendations in the NICE Clinical Guideline may set back the availability and quality of care for people with multiple sclerosis.
Significant shortfall in the number of UK MS specialist nurses shown by MS Trust report
A report published today by the MS Trust finds that there is a clear shortfall of at least 126 MS specialist nurses in the UK, with nurses routinely managing 550 patients as opposed to the recommended caseload of approximately 300 people per nurse.
MS research using stem cells gives hope for the future
The MS Trust takes to the radio to explain the current research trials.
NICE publishes draft of revised MS Clinical Guideline April 2014
NICE has published a draft of the revised clinical guideline Management of multiple sclerosis in primary and secondary care and has invited comments from registered stakeholders.
Survey suggests access to disease modifying drugs is not universal
A letter to The Telegraph today suggests that more than half of people with MS in the UK may not be getting access to treatments they need.
New health app launched to help people monitor their MS
A free app (SymTrac) that enables people to track their MS over time was launched yesterday.
Dimethyl fumarate (BG-12, Tecfidera) approved for use by the NHS in Scotland
The Scottish Medicines Consortium (SMC) has approved dimethyl fumarate (BG-12, Tecfidera) as a treatment for relapsing remitting multiple sclerosis on the NHS in Scotland.
The MS Trust welcomes the decision by SMC.
Small trial of simvastatin shows promise as treatment for MS
Brain volume loss and progression of the condition were both slowed and quality of life was improved
140 people with secondary progressive multiple sclerosis took either high dose simvastatin (80mg/day) or placebo in this two year, phase II clinical trial. MRI scans measured brain volume during the course of the study, disability was measured using the EDSS scale and participants completed questionnaires to measure the impact of MS on day-to-day living. Simvastatin was well tolerated by the participants.
Family risk recalculated
Research in Sweden suggests the risk of a relative of someone with MS also getting the condition is lower than previously thought.
Getting ready for winter
As winter approaches, advice has been published about remaining healthy and warm during the cold weather.
MS in black Caribbean people
A study at Kings College Hospital in London has found that people with MS of Caribbean descent had more rapid progression than white people.
Identification of more genes linked to risk of MS
Research published in the journal Nature Genetics has identified 48 new genes that may play a part in susceptibility to MS.
Worldwide increase in MS
There are now 2.3 million people with MS around the world according to a report that accompanies the new edition of the Atlas of MS published by the Multiple Sclerosis International Federation (MSIF).
Could the eye be a window into multiple sclerosis?
Recent research suggests that a detailed eye scan, optical coherence tomography, could be an effective way of monitoring multiple sclerosis.
Jack Osbourne diagnosed with MS
Jack Osbourne, the son of Black Sabbath frontman Ozzy and former X Factor judge Sharon, was diagnosed earlier this year after he lost 60% of the vision in his right eye.