MS in the Media
These are links to recent news stories that may be of interest to people in the UK. Click on the link beneath each item to be taken to the original story.
The MS Trust has not written the original items and does not endorse their content nor any claims made in them.
Links to stories are held on these pages for two months.
Designer with MS
22 May 2012
Ann Oliver became frustrated by the difficulty in finding stylish clothes that were easy for her to put on by herself and were suitable for wearing in her wheelchair. So she set up a company designing and producing fashion for women with a diability.
Juggling and brain plasticity
16 May 2012
Research suggests that juggling can help to expand the brain's white matter, which controls the ability to see and react to things. The ability of the brain to reroute nerve messages is called plasticity.
AAN research review
16 May 2012
The American National MS Society's review of the recent AAN (American Academy of Neurology) meeting, including studies of treatments in late-phase clinical trials, rehabilitation, understanding risk factors for MS and the interactions of genes, gender, and vitamin D levels.
MS Trust on the Radio 4 Appeal
15 May 2012
Chris Jones, co-founder of the MS Trust, who will be presenting the Radio 4 appeal on Sunday 20 May, talks about her life with MS.
Botox effective for bladder symptoms
15 May 2012
Publication of study into botulinum toxin for bladder problems in people with or with a spinal cord injury. Botox reduced incontinence incidents by 21-23 episodes in the treatment groups and time to need for retreatment was 254-256 days.
Cannabis for pain and spasticity
14 May 2012
A small study in California found smoked marijuana improved spasticity and pain in people with MS but also reduced thinking ability. The study was a crossover trial involving 30 people who smoked either marijuana or a placebo once a day for three days. After an eleven day gap, the groups swapped to the other treatment. Among limitations of this study was that it was difficult to blind participants to the active treatment and many had a history of marijuana use.
FDA safety review of fingolimod (Gilenya)
14 May 2012
The FDA (the American health regulator) has decided that it could not link fingolimod to the deaths of people taking the drug but that it remains concerned about its effect on heart rate. Recommendations on monitoring people before and during their first treatment are similar to those issued by the EMA in Europe in April.
Vitamin D and disability in MS - AAN
14 May 2012
Researchers in Baltimore have shown that higher vitamin D levels are associated with slightly less disability and greater preservation of gray matter in people with MS. 469 people were monitored for five years. Presented at the AAN meeting in April.
Proposed changes to DLA
13 May 2012
The government is beginning to focus on changing DLA. The coverage focuses on money saved rather than care needs, with annual savings of £2.24bn mentioned from cutting the number of claimants by half a million.
Research into progressive MS
11 May 2012
Report of an international meeting on how research in this area can be speeded up though developing new or improved clinical measures of MS progression.
What its like when mum gets multiple sclerosis
10 May 2012
Three women, diagnosed with MS in their thirties, describe how they cope with MS and family life.
Norfolk ex-soldier having to sell family home to pay care bill
10 May 2012
A Norfolk couple struggling to pay their contribution towards the cost of care, may have to sell their home.
FDA warns against CCSVI
10 May 2012
The FDA (the American health regulator) has issued a safety warning about surgery for CCSVI. The warning notes that the treatment is not approved for use in any condition in the veins affected by CCSVI, and that serious complications can occur (it cites two deaths though is unable to estimate frequency of these complications). It also highlights the lack of a proven association between CCSVI and MS.
Betaferon after 21 years
10 May 2012
Follow up data on 372 people who took part in the original Betaferon trial showed that the risk of death (from any cause) was reduced by 46.8% compared to those on the placebo arm.
Social care reform
09 May 2012
A draft bill to modernise adult care and support in England was included in Queens Speech. This aims to simplify processes and extend the individual's control of their care with personal budgets. The contentious issue of how this is funded is not addressed.
'I'll cope with MS. I can't waste my life since Amy lost hers'
08 May 2012
Janis Winehouse talks about coping with MS since being diagnosed with MS in 2001, twenty years after her first symptoms.
Britain's army of unpaid carers 'being pushed to breaking point'
08 May 2012
New poll of carers reveals 60 per cent are suffering health problems and many are aged 60 or over. Norman Phillips describes the impact of caring for his wife Ros who has MS.
Sunshine and vitamin D: why cloudy skies are bad for our health
08 May 2012
Recent research has suggested that vitamin D is important to ensure general health, not just in preventing rickets. Evidence points to a role in preventing MS, but current government recommended daily intake is not thought to be adequate to provide this protection.
Long-term conditions strategy consultation
03 May 2012
The Department of Health is asking people to suggest what should be covered by the strategy, which is currently being drafted. It is expected to be published towards the end of the year.
Being diagnosed with MS
03 May 2012
Guardian columnist looks back on first year since his unexpected diagnosis and how it caused him to reassess his life.
Living with MS
02 May 2012
People in Grimsby talk about some of the problems presented by life with MS and the way they are perceived by people who don't understand the condition.
Neurology services report recommendations partially accepted
01 May 2012
The Government has responded to the Public Accounts Committees report on services for people with neurological conditions. The Neurological Alliance is disappointed by the partial acceptance of the recommendations.
Secret Art Show
01 May 2012
The latest Secret Art Show will be launched on 4 May to raise funds from the MS Trust. Original works of art are sold online but the names of the artists not revealed until after the sale.
Man with MS travels the world
30 April 2012
George Pepper, the man behind the shift.ms online community, tells the BBC about his round the world trip. Item supports an MS Society survey into attitudes to and awareness of MS.
Lacosamide for trigeminal neuralgia - AAN
30 April 2012
In a small study of 11 people with trigeminal neuralgia (none of whom had MS), ten said that they had reduced pain when treated with lacosamide. All had previously tried other treatments.
MedPage Today (requires free registration)
MS not understood in Scotland
30 April 2012
A survey by the Multiple Sclerosis Society in Scotland shows a lack of understanding about disability and the stigmatisation of disabled people.
Pregnancy and disease modifying drugs - AAN
29 April 2012
Two studies suggest that Tysabri, the beta interferon drugss and Copaxone are not associated with major problems if taken during pregnancy. Both studies warn that the numbers involved in the studies were small.
MedPage Today (requires free registration)
Effects of menopause on MS - AAN
27 April 2012
Menopause had little effect on measures of disability in women with MS, though self reported symptoms worsened more in women than in a control group of similarly aged men.
MedPage Today (requires free registration)
Glatiramer acetate (Copaxone) and spasticity - AAN
26 April 2012
Interim results from a study by the manufacturer of glatiramer acetate (Copaxone) suggest that people switching from one of the beta interferon drugs experienced reductions in muscle stiffness and pain. Based on the first 52 people in a study that will recruit 110.
Development of MS over 20 years - AAN
26 April 2012
Study of the long-term development of MS in 722 people diagnosed with relapsing remitting MS. In the 10 years after diagnosis, 270 (37%) had developed secondary progressive MS. Of the people who still had relapsing remitting MS, 339 were followed to 20 years and 166 found to have developed to secondary progressive MS. After 20 years, 173 (24%) of the original group still had relapsing remitting MS. People in this group were more likely to be women diagnosed in their 20s with few, mainly sensory symptoms.
MedPage Today (requires free registration)
CCSVI - AAN
26 April 2012
Studies of people with MS and controls found that CCSVI as defined by Prof Zamboni's criteria was as prevalent in the non MS group as in the MS group.
MedPage Today (requires free registration)
Natalizumab (Tysabri) long-term study - AAN
26 April 2012
The TOP trial will follow 4500 people on Tysabri for ten years. Initial results from four years show relapse rates reduced from 1.99 at baseline to 0.28 and EDSS scores level. People who has previous immunosuppressant treatment did slightly better, but had higher risk of PML. Also mentions studies of the Stratify test for relative risk of PML and into the improvement in fatigue scores of people on Tysabri.
Fampridine long-term data - AAN
25 April 2012
Longer term safety and efficacy data presented. Responders continued to show improvements in walking speed for up to 5 years. Safety profile similar to during initial studies.
Stopping natalizumab (Tysabri) and relapse risk - AAN
25 April 2012
Small, short-term study. Nine people stopped Tysabri on learning that they were JCV positive. All went onto another drug, but five had a relapse within six months. Of these, four went back onto Tysabri but didn't do as well as before stopping treatment.
Glatiramer / interferon combination - AAN
25 April 2012
Results from the three year CombiRx trial, which involved 1,008 people, showed only small differences between the combined treatment as opposed to treatment with either drug alone.
Fingolimod final guidance
25 April 2012
NICE have issued their final guidance that fingolimod should be available on the NHS in England and Wales as a treatment for highly active relapsing-remitting multiple sclerosis in adults who have an unchanged or increased relapse rate or ongoing severe relapses compared with the previous year despite treatment with beta interferon.
Fingolimod (Gilenya) extension trial - AAN
24 April 2012
Seven year extension trial data shows people from the placebo arm who switched to fingolimod showed improvements in relapse rate, though people eon treatment throughout did best. Also mention of a new compound called BAF312 (siponimod) for which phase III trials are planned next year.
BG12 study - AAN
24 April 2012
CONFIRM study looked at two doses of BG12, Copaxone and placebo in 1,430 people. After two years, BG12 reduced relapse rate by 51% or 44% and Copaxone by 29%. Relapse free after two years (compared to placebo) 45% or 34% for BG12, 29% for Copaxone.
Alemtuzumab (Lemtrada) study - AAN
24 April 2012
CARE-MS II study involved 840 people with MS on either alemtuzumab or beta interferon 1a (Rebif). Relapse rate was reduced by 49%. After two years 65% of alemtuzumab and 47% of Rebif were relapse-free.
Fingolimod safety review
20 April 2012
The European Medicines Agency (EMA) has published its recommendations for the management of potential problems in people starting treatment with fingolimod (Gilenya). The recommendation says that doctors should not prescribe the drug to people with a history of cardiovascular disease, such as heart or blood pressure problems. People starting the drug should also be monitored before and for six hours after their first treatment.
Omega 3 oil doesn't affect MS
16 April 2012
Norwegian research found no effect on progression. 92 people had either omega-3 supplements or placebo only for six months. After six months all participants also started on interferon beta. There was no difference in relapse rate and the proportion who had no progression was the same in both groups.
ONO-4641 results presented - AAN
16 April 2012
Phase 2 study reported at the American Academy of Neurology's annual meeting. 407 people with relapsing remitting MS received one of three doses of ONO-4641 or placebo for 26 weeks. Results showed 77-92% fewer lesions. Side effects included slower heartbeat and blood pressure changes.
An Instinct for Kindness
15 April 2012
Actor Chris Larner has put together a one man show about how he helped his ex-wife, who had MS, end her life at the Dignitas clinic.
Fingolimod (Gilenya) and PML
14 April 2012
One person on fingolimod has developed PML, a serious brain infection. They had previously been treated with Tysabri and it is not yet clear which drug (or the combination) is the cause.
A letter to multiple sclerosis
14 April 2012
The daughter of a man with MS writes powerfully about how it affected her family.
Self referral physiotherapy
13 April 2012
The Isle of Man has launched self-referral to physiotherapy so that people don't need to go via their GP. The scheme will be extended to people with long-term conditions such as MS from July.
Hotter days affect mental tasks
12 April 2012
A recent study concludes that hot weather may also worsen the ability to perform mental tasks in some people with MS. The research may help people plan activities and may improve the design of future clinical trials.
Effect of fingolimod in different groups of people
10 April 2012
Analysis of previous results showed effects based on gender, age, disease activity etc. Generally similar results, though the reduction in relapse rate in people over 40 was much less than in younger people.
Fampridine (Fampyra) not recommended in Scotland
10 April 2012
The Scottish Medicines Consortium (SMC) has not recommended fampridine within NHS Scotland as a treatment for people with MS with walking problems.
Stem cell doctor forced to close his clinic is back in business
08 April 2012
The founder of the XCell-Center in Germany, which provided expensive treatments with no proven benefits and was closed in 2011 following the death of child, has relocated his business to Lebanon.
Pianist with MS
07 April 2012
Paul Murray, a student at Aberdeen University who has MS and has had a brain tumour, taught himself to play piano with one hand.
New MS nurse in Stornoway
04 April 2012
Rachel Morrison has been appointed as MS specialist nurse to cover the Western Isles, an area where people previously were covered by services in Glasgow. She will take up her post in May
Respite - Brambles
02 April 2012
The sale of Brambles, the respite centre in Surrey formerly owned by the MS Society, has been completed.
NICE guidance on CCSVI
28 March 2012
NICE has published their final CCSVI guidelines which say that the suggested procedure (percutaneous venoplasty) should only be used in the context of research as there is currently inadequate evidence about the surgery.
Pain treatment in Wales
27 March 2012
All Wales Medicines Strategy Group (AWMSG), which makes recommendations on the commissioning of treatments across Wales, has recommended Qutenza patches (which use capsaicin) be provided as a treatment option for difficult-to-treat nerve pain.
Fampridine in north east England
26 March 2012
The NHS North East Treatment Advisory Group (NETAG), which makes recommendations on the commissioning of treatments within NHS North East, has decided not to fund prescriptions of fampridine on the grounds that they were not satisfied that it represented a cost-effective treatment.
CCSVI surgery
25 March 2012
Researchers at the Society of Interventional Radiology's 37th Annual Scientific Meeting have reported of trials of surgery to relieve symptoms of CCSVI.
In one study 192 people reposonded to a questionnaire after treatment. People with relapsing remitting and primary progressive MS reported about 75% and 70% improvements in physical and mental health wellbeing. People with secondary progressive MS did less well (50% and 59%). Another review of 95 people reported symptomatic improvement in 55%, with people closer to diagnosis doing better.