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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.



PIP consultation on walking distance

18 June 2013

The Department of Work and Pensions is to run a consultation on the 20 metre walking test for eligibility for Personal Independence Payments (PIP). The distance under Disability Living Allowance was 50m and the tighter criterion was added after the last consultation on changes.

DWP press release
Independent
Guardian

Benefits - A to Z of MS

Smoking and MS progression

18 June 2013

A study of 895 people with MS found that those who smoked had a higher risk of reaching EDSS 4 or 6 than non smokers. People who gave up smoking did better than those who continued.

MSIF

Smoking - A to Z of MS

Changes in pain over time

17 June 2013

An Australian study followed 94 people with MS over seven years to watch for changes in pain. More people experienced pain at the end of the follow up and more said that it had a limiting effect on daily life. People increasingly used approaches other than medication to manage pain and became less reluctant to mention pain to their doctors.

MS Research Australia

Pain - A to Z of MS

Viagra out of patent

15 June 2013

The UK patent on Viagra runs out this week, opening the door to cheaper, non branded versions of sildenafil citrate. Article considers if this will lead to more people getting private prescriptions to get round NHS barriers to access, but not getting their symptoms properly managed.

Scotsman

Sexual issues - A to Z of MS

Tysabri and PML risk

14 June 2013

Information on further refining the stratification of risk of PML in people taking natalizumab (Tysabri) - particularly in people who are antibody positive - was presented at the recent European Neurology Society meeting.

Medscape (requires free resistration)

PML (Progressive multifocal leukoencephalopathy) - A to Z of MS

Sara Jones

14 June 2013

A woman in north Wales will talk about her diagnosis with MS, living with the condition and her fundraising for the MS Trust on S4C, the Welsh language television channel, on Tuesday (18 June).

Daily Post

My Story - personal stories of life with MS

Canine partner

12 June 2013

How a trained dog has given a woman with MS the confidence to go out again.

This Is Hampshire

My Story - personal stories of life with MS

Epstein Barr virus

12 June 2013

Italian research (published in April) has found that disease activity in relapsing remitting multiple sclerosis coincided with a heightened immune response to the Epstein Barr virus.

Healthline

Epstein Barr virus (EBV) - A to Z of MS

Smoking as risk factor

11 June 2013

A study from the Ausimmune project looked at lifestyle factors for 282 people with CIS and 558 controls. There was no difference in risk level based on alcohol and coffee and tea consumption or physical activity and blood pressure. Smoking increased the risk of a first demyelinating event by 79%.

Multiple Sclerosis Research Australia

CIS (clinically isolated syndrome) - A to Z of MS
Smoking - A to Z of MS

Strain on sandwich carers

11 June 2013

A report by the Money Advice Unit highlights the financial strain on people who find themselves caring for both older and younger relatives (something it says affects 10% of adults in the UK).

Guardian

Information for carers

Pegylated interferon

11 June 2013

Results show that the less frequent dose version of beta interferon reduced relapses by about a third (equivalent to the current interferons) and also reduced lesions compared to placebo. Results presented at the European Neurology Society (ENS) meeting in Barcelona.

Medscape (requires free registration)

Peginterferon beta-1a (Plegridy) - A to Z of MS

European Neurological Society meeting review part 2

11 June 2013

A further review of topics covered at the European Neurological Society meeting in Barcelona. Includes diagnostic tests and the link between brain volume and cognitive symptoms.

NeuroSens

Latest MS research updates

Finding the right treatment

11 June 2013

Discussion of the expanding range of disease modifying drugs for relapsing MS at the recent European Neurology Society (ENS) meeting in Barcelona.

Medical News Today

Disease modifying drugs for relapsing MS - A to Z of MS

Benefits changes

10 June 2013

Personal Independence Payment (PIP) replaces Disabled Living Allowance (DLA) for all new claimants in Britain (but not Northern Ireland) from 10 June. The scheme had been piloted in some area of England since April. Existing DLA claimants will start to be moved to PIP from 2015.

BBC
Independent

Benefits and tax credits - A to Z of MS

Fingolimod (Gilenya) study

10 June 2013

The makers of fingolimod report their presentations at the ENS meeting in Barcelona that show the drug reduced signs of disease activity - brain volume loss, MRI lesion activity, relapse rates and disability progression - in people who switched from beta interferon.

Novartis press release

Fingolimod (Gilenya) - A to Z of MS

Carers lack support

10 June 2013

To coincide with Carers' Week (10-16 June), a report called Prepared to Care? Has been published, which criticises the lack of support and information for people when they become carers.

Carers UK
Herald

Information for carers

Surgery for CCSVI

10 June 2013

An interview with Dr Alexander Rae-Grant who presented a review of information on CCSVI at the recent CMSC/ACTRIMS meeting. He says people should wait for the result of a new trial into the effectiveness of surgery before signing up for treatment.

Medscape (requires free registration)

CCSVI - A to Z of MS

European Neurological Society meeting review part 1

10 June 2013

A review of topics covered at the NNS meeting in Barcelona includes birth outcomes in fathers with MS, predictive possibilities of MRI, teriflunomide (Aubagio) and liver injury, alemtuzumab (Lemtrada) and infections, BG-12 (Tecfidera) in people recently diagnosed, and switching to fingolimod (Gilenya).

NeuroSens

Latest MS research updates

Fish and omega 3 supplements

07 June 2013

An Australian survey suggests that regularly eating fish improves quality of life scores, as do omega 3 supplements, though to a lower level. Taking flaxseed oil was associated with lower relapse rates. The study, which was self reported and had no objective medical measures, calls for controlled trials of omega 3 supplementation.

MS Research Australia

Diet - A ot Z of MS

Survey looks at cognition and MS

06 June 2013

Results of an international survey of cognition run by the MS International Federation (MSIF) found that 80% of respondents were affected by cognition, the impact on work was high and that understanding of the symptoms amongst family members was low.

MSIF

Cognitive symptoms - A to Z of MS

Immune retraining study promising

05 June 2013

A study has found that attaching white blood cells to fragments of myelin and reinjecting them into people with MS may reduce the immune attack on myelin but leave the normal immune response intact. The study was primarily checking safety of the procedure and only involved nine people.

BBC
Independent
Daily Telegraph
National MS Society
Science Codex

Latest MS research updates

Tysabri screening concerns

05 June 2013

A paper in the New England Journal of Medicine questions the accuracy of the test for the JC virus in people taking Tysabri. From a small sample, researchers identified 17 people who had been exposed to the virus when checking for both JCV antibodies and DNA. Six of these had shown as free of the virus when checked for JCV antibodies alone (the standard test).

MedPage Today

Natalizumab (Tysabri) - A to Z of MS

Long-term outcomes for people with MS

05 June 2013

Data presented at the CMSC/ACTRIMS meeting showed that life expectancy in MS is 6 years shorter, people with MS are diagnosed with cancer less frequently and the disease modifying drugs don't give significant benefit in terms of disability progression.

Medscape (requires free registration)

Latest MS research updates

Acceptable risk in MS treatments

05 June 2013

A survey of 300 people with relapsing-remitting MS presented at the CMSC/ACTRIMS meeting found that people were willing to accept a 1% risk of serious adverse effects in a treatment that promised of improved symptoms.

Medscape (requires free registration)

Risk - what your clinician should tell you - Open Door article

Goat serum study

03 June 2013

In a retrospective study of 140 people who had been treated with goat serum (Aimspro) most showed improvement in at least one area. Some reports mention the lack of objective measures, and no indication if the improvements were maintained. From the CMSC/ACTRIMS meeting.

MedPage Today
eMax Health
Daval International press release

Goat serum (Aimspro) - A to Z of MS

Rituximab and secondary progressive MS

03 June 2013

A small retrospective study of 25 people with secondary progressive MS who had taken rituximab found that 12 had their progression stabilised and 9 improved based on EDSS scores. Development of rituximab we terminated in 2011. From the CMSC/ACTRIMS meeting.

MedPage Today

Rituximab - drugs in development

Autologous hematopoietic stem cell transplant study results

03 June 2013

A study that involved depleting the immune system and then reinjecting someone's own stem cells found that 83% of the 24 paticipants showed no signs of clinical or MRI disease activity 2 years after treatment. Side effects were common - mostly gastrointestinal or blood related. From the CMSC/ACTRIMS meeting.

MedPage Today

Stem cells - A to Z of MS

Lubiprostone for constipation

02 June 2013

A small study involving 21 people with MS and constipation found that lubiprostone increased spontaneous bowel movements more than threefold (though this depended on how data from three people who dropped out was counted). A side effect was diarrhoea. From the CMSC/ACTRIMS meeting.

MedPage Today

Bowel symptoms - A to Z of MS

Less frequent Copaxone

01 June 2013

A version of glatiramer acatate (Copaxone) that requires injections three times a week instead of every day has been submitted for a review by the FDA, the drug regulatory body in the USA, in advance of application for a licence.

PharmaBiz

Glatiramer acatate (Copaxone) - A to Z of MS

Alemtuzumab study results

01 June 2013

Data from 145 people taking alemtuzumab and who had had 2 relapses in the year before treatment showed that relapse rates fell by about half compared to beta interferon and a quarter showed no relapses, signs of disease progression or MRI activity during the two year trial. From the CMSC/ACTRIMS meeting.

MedPage Today

Alemtuzumab (Lemtrada) - A to Z of MS

Online programme helps walking

01 June 2013

Researchers in Illinois found that people following an online programme involving information and live video support increased their daily step counts by about a third and also showed improved measures of depression, anxiety, fatigue. A study by the same group of an intervention to help with falls through improving balance found the risk of falling halved. From the CMSC/ACTRIMS meeting.

MedPage Today

Walking difficulties - A to Z of MS

Dimethyl fumarate (Tecfidera) delayed

31 May 2013

Biogen have delayed the progress of the European licence for dimethyl fumarate (Tecfidera, also knowna s BG-12) so that it can produce data that will allow the company to protect the drug's patent. A licence decision is now expected in the second half of the year.

Reuters
Bloomberg

BG-12 (Tecfidera) - Drugs in development

Natalizumab (Tysabri) licence extension withdrawn

31 May 2013

The manufacturers of natalizumab (Tysabri) have withdrawn their application to extend the European licence to include any people with relapsing remitting MS who didn't have JC virus antibodies. The drug is currently only licensed for people with highly active disease. The evidence available was not yet strong enough to achieve the extension.

EMA

Natalizumab (Tysabri) - A to Z of MS

Study of people most likely to seek vein surgery

31 May 2013

People with long standing progressive MS were more likely to seek CCSVI treatment according to Canadian research. From the CMSC/ACTRIMS meeting.

MedPage Today

CCSVI - A to Z of MS

Returning to work after an illness

30 May 2013

An article looking at the difficulties faced by people going back to work after a period of time spent off for treatment for health conditions. Main case study is someone with cancer, but there is comment from the MS legal officer at the Disability Law Service.

Guardian

At work with MS

Testing new drugs

30 May 2013

A centre to test possible new drugs for MS is to open at the Southern General Hospital in Glasgow. The unit is funded by the Scottish government.

BBC

Treatments in development

Plegridy (peginterferon beta-1a)

21 May 2013

Plegridy, a version of beta interferon that requires fewer injections, has been submitted for licensing in the USA based on the first year results of the two year ADVANCE trial. The trial is looking at one a fortnight and once a month doses. Initial results suggest reduction in relapses of about a third - similar to the existing beta interferon drugs.

Boston Globe
National MS Society

Latest MS research updates

Beta interferon and cognition

20 May 2013

A small study followed up 16 people involved in one of the original beta interferon trials. After 16 years, cognition symptoms were relatively stable in all those studied, but people who had been on beta interferon for all 16 years had better verbal memory functioning than those who had initially been on placebo for five years before switching to interferon.

MS Research Australia

Cognition and cognitive symptoms - A to Z of MS

Arbaclofen placarbil

20 May 2013

XenoPort has discontinued its potential spasticity treatment (a slow release version of baclofen) after a phase 3 trail showed it was no more effective than placebo.

Reuters

Spacticity - A to Z of MS

Impact of MS symptoms on work

15 May 2013

A review of three recent studies from the UK, Germany and the USA shows that fatigue and cognition have a significant impact on employment for people with MS. The UK study showed that after 11 years, 43% of people with MS had left work and about half of those still working had reduced their hours.

MS Research Australia

At work with MS

Future of The Brambles

09 May 2013

Following the closure of the owners plan to knock it down and build a bigger residential home for older people with "an MS site on the side".

Get Surrey

Respite - A to Z of MS

Carers' rights

07 May 2013

The Care and Support Minister, has said that new laws to protect the right of carers to a social services assessment will be included in the Queen's Speech.

Daily Telegraph

Information for carers

Fingolimod and blood disorder

06 May 2013

Fingolimod (Gilenya) has been added to the US drug regulator's watch list due to reports of hemophagocytic syndrome - a rare blood disorder. Being on the list doesn't affect availability of fingolimod but means that the FDA will investigate whether there is a link between adverse event and the medication.

Medscape (requires registration)

Fingolimod (Gilenya) - A to Z of MS

MS and race

06 May 2013

A study of people in California found that black people had a 47% higher risk of MS than white people. The risk was lower for Hispanic (58%) and Asian (80%) people. The proportion of women to men was about 2:1 across the whole study but 3:1 amongst black people.

Newswise
National MS Society (USA)
Medical News Today

Prevalence and incidence - A to Z of MS

Mother and daughter with MS

04 May 2013

Article for MS Awareness Week about a mother and daughter from Middlesbrough who both have multiple sclerosis.

Middlesbrough Evening Gazette

My Story - personal stories of life with MS

Diet and MS

03 May 2013

Review of the recent research in Cyprus and Norway looking at dietary supplements and fatty acids in MS. Also mentions ongoing Australian research looking at the effect of cholesterol on MS and progression.

MS Research Australia

Diet - A to Z of MS

Modafinil and fatigue

03 May 2013

Novelist MJ Hyland found modafinil (which she describes as a neuroenhancer) helped her fatigue. She bought the drug online without a prescription. Following a European safety review, modafinil is only licensed for treating narcolepsy.

Guardian

Modafinil (Provigil) - A to Z of MS

Young carer rewarded

03 May 2013

A 14 year old who cares for his mother with MS has been given a day out at the Blackburn Rovers training ground.

Lancashire Telegraph

Information for carers

Closure of The Brambles

01 May 2013

The Brambles, the MS respite centre in Surrey, will close on Saturday 4 May. The owners suggest that the centre was too small to provide the services needed.

Redhill And Reigate Life

Respite - A to Z of MS

Gaps in access to MS services highlighted

29 April 2013

A survey by the MS Society suggests that levels of disease modifying drug usage varies across the four countries of the UK. The survey also draws attention to difficulties accessing fampridine and Sativex, inequalities in social care, financial problems and MS specialist services.

BBC
Guardian
Daily Telegraph

Support MS nurses
Disease modifying drugs - A to Z of MS

Woman with MS

28 April 2013

Sophie Yates, who was diagnosed shortly after getting married, about how MS affects her and her husband.

Sunday Express

My Story - personal stories of life with MS

Drug for uncontrolled laughing or crying

26 April 2013

The the European drug regulator's Committee for Medicinal Products for Human Use (CHMP) has recommended Nuedexta as a treatment for pseudobulbar affect (uncontrolled laughing or crying), which can be a symptom of MS. A license should follow in the next few months.

European Medicines Agency (EMA)

Pseudobulbar affect - A to Z of MS

Teriflunomide (Aubagio) and CIS

25 April 2013

The results of the two year TOPIC study showed that conversion from clinically isolated syndrome (CIS) to definite MS was about 40% lower in people taking different doses of teriflunomide compared to people on placebo.

Genzyme press release

Teriflunomide (Aubagio)
Clinically isolated syndrome (CIS) - A to Z of MS

PML and dimethyl fumarate

24 April 2013

Two cases of PML in people taking a drug similar to BG-12 (Tecfidera) have been reported in the New England Journal of Medicine. Biogen, who make BG-12, report that they are aware of two further cases. All four were taking a formulation of the drug as a treatment for psoriasis.

MedPage Today
National MS Society (USA)

BG-12 (Tecfidera)
PML (Progressive multifocal leukoencephalopathy) - A to Z of MS

Complementary and alternative medicine use in MS

23 April 2013

Scandinavian research into how people with MS use alternative therapies shows use is common, is used both to complement conventional treatment and on its own, is associated with people with a good level of education, and that people "do not usually use alternative treatments for treating symptoms, but as a preventative and strengthening element".

Medical News Today

Complementary and alternative medicine - A to Z of MS

Supplement combination trial

23 April 2013

A small randomised, double-blind, placebo-controlled study in Cyprus compared three varieties of supplements with placebo over 30 months. A group taking omega-3 and omega-6 fatty acids on a 1:1 ratio, vitamin A and two types of vitamin E had 64% fewer relapses than the placebo group. Only 41 of the 80 participants completed the study.

eMax health

MS research updates

Thalamus atrophy and risk of MS

23 April 2013

Research using MRI scans says that shrinkage (atrophy) in the area of the brain called the thalamus in people with clinically isolated syndrome (CIS) is associated with higher risk of being diagnosed with MS.

Web MD
Medical News Today

Clinically isolated syndrome (CIS) - A to Z of MS