Search About us Blog Membership Contact Newsletters Home How we can help Your first visit About MS Support us Events Donate The MS Society went to 10 Downing Street with their ambassador Janis Winehouse

Source MS Society: The MS Society went to 10 Downing Street yesterday with their ambassador Janis Winehouse and campaigner Ashley Arundale to deliver a message to the PM: Unfair PIP assessments must change.

“More than 21,000 of us have signed an open letter demanding the UK Government makes changes to Personal Independence Payment (PIP). The open letter came after our research showed major flaws with the system.

It highlights some of our concerns with PIP, including uninformed assessors, inaccurate reports and excessively complex forms.

Our Downing Street delivery team was made up of people from our campaigns team and our wider MS community – including our MS Society Ambassador Janis Winehouse who has secondary progressive MS and campaigner Ashley Arundale who has relapsing MS.”  Read on. 

Efficacy of three neuroprotective drugs in secondary progressive multiple sclerosis (MS-SMART)

Source The Lancet: Neurodegeneration is the pathological substrate that causes major disability in secondary progressive multiple sclerosis. A synthesis of preclinical and clinical research identified three neuroprotective drugs acting on different axonal pathobiologies. We aimed to test the efficacy of these drugs in an efficient manner with respect to time, cost, and patient resource.

Methods

We did a phase 2b, multiarm, parallel group, double-blind, randomised placebo-controlled trial at 13 clinical neuroscience centres in the UK. We recruited patients (aged 25–65 years) with secondary progressive multiple sclerosis who were not on disease-modifying treatment and who had an Expanded Disability Status Scale (EDSS) score of 4·0–6·5. Participants were randomly assigned (1:1:1:1) at baseline, by a research nurse using a centralised web-based service, to receive twice-daily oral treatment of either amiloride 5 mg, fluoxetine 20 mg, riluzole 50 mg, or placebo for 96 weeks. The randomisation procedure included minimisation based on sex, age, EDSS score at randomisation, and trial site. Capsules were identical in appearance to achieve masking. Patients, investigators, and MRI readers were unaware of treatment allocation. The primary outcome measure was volumetric MRI percentage brain volume change (PBVC) from baseline to 96 weeks, analysed using multiple regression, adjusting for baseline normalised brain volume and minimisation criteria. The primary analysis was a complete-case analysis based on the intention-to-treat population (all patients with data at week 96).  Read on. 

Siponimod licensed for secondary progressive MS

Source MS Society: This week the European Medicines Agency (EMA) granted a license for siponimod (brand name Mayzent) to treat adults with secondary progressive MS with active disease.

That makes siponimod the first and only oral treatment in Europe specifically for patients with secondary progressive MS with active disease.

What was the evidence?

The drug approval is based on the Phase III EXPAND trial, the largest randomised clinical study of people with secondary progressive MS.

This trial showed taking siponimod significantly reduced the risk of disease progression, including physical disability and cognitive effects.

Who can have siponimod (Mayzent)?

Siponimod hasn’t been recommended for everyone with secondary progressive MS. It’s only been recommended for people who have evidence of inflammatory activity on an MRI scan or who still have relapses.  Read on.

Do you have any unwanted Christmas presents?

We would be grateful for donations of any unwanted Christmas presents that we can use for raffle prizes.

Please bring them to the Centre and we can find them a loving home whilst raising much-needed funds for the Centre!

Funeral Friday 17th January

Message received from Beryl’s daughter…..

Thank you so much for your reply; and kind words. It’s still hard to believe she’s gone and we miss her.


The funeral is this Friday 17th January at 11amGarden House, Milton Hill, Steventon, Oxon OX13 6AF


You would be very welcome and please could you let her other friends at the centre know they are welcome too. Refreshments will be served later after the burial at 1pm at Garden House.

Beryl

It is with regret that I have to report that Beryl Slater passed away on Monday.  Beryl was the Founder Member of the MS Centre in 1984.  She was Honorary Treasurer until 1990 when the Centre became a Limited Company and has remained a Trustee and Member of the Management Committee.   Beryl passed away peacefully at home on 6th January, it would of been her 91st birthday in on 11th February.  The photo attached was taken in December when Clive (former Chair), Dave and Sue had a lovely afternoon tea with Beryl at her home in Didcot.  There is a sympathy card on the table at the centre for people to sign.  Funeral arrangements are not known yet.
Beryl was a real personality and always had the Centre’s best interests at heart.  She will be sorely missed, especially by Sue.  The Centre would not be here without her.   Very sad news.

100 club winners December


Chris Webb

Geoff Fewings

Babs Copley

Sharing a total prize fund of £82.50

Why not join the 100 club when you renew your 2020 membership.  Please ask for details.  Thank you to all those currently in the 100 club.

Half of disability benefits appeals won in tribunal court

Source BBC: One in two people who appealed in court against a decision to deny them disability benefits were successful, analysis of five years of data shows.

In total, more than 550,000 people won an appeal over their benefits at tribunal between 2013 and 2018.

Ann Barker, who has bipolar disorder, said she was tempted to give up, but had twice fought a decision at tribunal and won.

The government said only around 5% of disability decisions were overturned.

Benefits assessments are carried out on behalf of the Department for Work and Pensions (DWP) by the private contractors Capita, the Independent Assessment Services (formerly called Atos) and Maximus.

The success rates showed benefits assessments were beset by “poor decision-making” and “obvious inaccuracies”, charities said.

In 2018, the Commons Work and Pensions Committee said failings in disability benefits assessments had led to a “pervasive lack of trust” in the system. It said ministers should consider taking the process back in-house.  Read on.