https://docs.google.com/document/d/1nSxXyXPcDAwYI1Cv_H051YRzvMXv55tdD8477OxJkWM/edit
Temelimab: Early clinical trial suggests potential for remyelination
Results from an early-stage clinical trial suggest that temelimab may promote remyelination and prevent loss of nerve cells.
Information from the MS Trust website:
“The study in brief
Current disease modifying drugs can reduce damage to myelin but can’t stop it completely or repair damage that has already happened. Laboratory studies have indicated that a potential new treatment, temelimab, could promote remyelination. Its potential in people with MS has been assessed in an early clinical trial.
270 people with relapsing remitting MS were recruited. They took one of three doses of temelimab or placebo, given as an intravenous infusion every four weeks. After 24 weeks, people in the placebo group switched to one of the three temelimab doses while those who had started on temelimab remained on their original dose. Treatment continued for up to 96 weeks.
At 24 weeks, there was no difference in the number of active lesions between the three doses of temelimab and placebo. At the end of the study, people who had taken the highest dose of temelimab throughout had fewer T1-hypointense lesions. This type of lesion, also known as a black hole, is associated with MS disability and progression. There was also a reduction in brain tissue loss and improvement in MRI markers of remyelination.
These results suggest that temelimab has little effect on the inflammatory MS activity which is responsible for relapses. However, its effect on MRI markers suggest that it may promote remyelination and prevent loss of nerves. Researchers have set up another study to evaluate temelimab further; this study is underway and results are expected in the first half of 2022.”
You can read more on the MS Trust website here: https://mstrust.org.uk/research/research-updates/211026-temelimab-potential-remyelination
New study shows link between smoking and MS
New research into the impact of smoking on multiple sclerosis (MS) has found that quitting smoking may cause a slowing of mobility deterioration to match the rate of progression in people who’ve never smoked.
Previous studies have shown that smoking can make MS worse. It’s associated with a faster accumulation of disability and could accelerate the transition from relapsing to secondary progressive MS. This study provides further data that smokers’ mobility deteriorates more quickly, compared with non-smokers. This is independent of anxiety and depression – two factors also thought to influence motor deterioration.
Find out more here: https://www.charitytoday.co.uk/research-finds-quitting-smoking-can-slow-…
Are you doing Lateral Flow Tests?
We are all encouraged to get tested frequently because it helps detect the most infectious Covid-19 cases and helps stop the virus spreading.
About 1 in 3 people with Covid-19 do not have symptoms but can still infect others. You can get free regular Covid tests if you do not have symptoms of Covid-19.
It’s recommended that we all do rapid Lateral Flow Device Covid tests at least twice a week (every 3 to 4 days) to check if we have the virus. If people test positive, they should get a PCR test and self-isolate until they get a negative result, as this helps stop the virus from spreading.
All staff, therapists and volunteers at the Centre regularly do Lateral Flow Tests and we encourage our members to do so too.
Even if you’re vaccinated, there’s still a chance you can pass Covid-19 on, so you should keep getting tested regularly.
You can order free Covid tests to do at home and keep the people you care about safe, or there are local click and collect centres. They are also freely available from chemists.
However, if you DO have symptoms of Covid-19, you need a different test called a PCR test, which you can book on the Government website.
Please do not attend the Centre if you feel unwell, even with a negative Lateral Flow Test.
‘Introducing, Selma Blair’
‘Introducing, Selma Blair’ documents Selma Blair’s journey getting HSCT treatment for her MS. In the UK, the documentary is available for streaming on Discovery+ from 21 October. In her documentary, Selma has HSCT for MS. Haematopoietic stem cell transplantation is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. Read more about HSCT on the MS Society website here: https://mssoc.uk/3e1Jj4a
Volunteers needed to do a supermarket collection
Volunteers needed to do a supermarket collection at Didcot Tesco for 1.5hr time slots. We will be inside the store so it will be warm. Two people needed per slot. Date: Friday 10th December. It’s been a difficult financial time for the centre so if you could spare some time to help we would really appreciate it. Please speak to Sue with your preferred time.
Enable Magazine: Introducing the November-December issue
Presenting Enable Magazine
November-December issue
The UK’s leading disability and lifestyle title
Introducing the November-December issue of Enable Magazine.
We’re so excited to share this issue with you and your network.
We’re marking the lead up to Christmas by putting the spotlight on the Strictly glitter ball as we chat to actress Rose Ayling-Ellis, the show’s first ever deaf contestant. Winter brings excitement, but it can also mean a strain on care providers. This issue, we speak to unpaid carers, the social care sector and care homes.
Inside the magazine, researchers from the Michael J. Fox Foundation reveal the details of a ground-breaking study that could change the treatment of Parkinson’s disease. Plus, we catch up with the UK’s first Disability Ambassador for the hospitality sector before taking to the new Minister for Disabled People. All of this and much more in the latest issue of Enable.
Nic Chapman: my MS battle and the treatment that’s given me hope
You can follow Nic’s journey via her instagram account @nicolachapman
Healthwatch Oxfordshire Survey – Are you waiting for NHS Hospital treatment or care?
Healthwatch Oxfordshire would like your help – We’d like to hear about experiences of waiting for the hospital appointment or care people need. We’d also like to know what advice, information, or support the NHS has given you while you wait.
This survey is for people who are waiting now. It is also for people who have had a hospital appointment or care in the last 18 months. When you answer the questions, please tell us about your most recent experience. Or, if you have been waiting for multiple treatments, or have received one and are waiting for another, the survey can be completed more than once.
Could you please share the following link with your members so that we can hear about their experiences https://www.surveymonkey.co.uk/r/NHSWaitingListExperiences
The survey will close on Tuesday 9th November
.
Everything you tell us is confidential and will help the NHS understand how it can better support people like you waiting for treatment.
We are carrying out this survey in partnership with Healthwatch organisations in Bucks, Reading, West Berks and Wokingham Borough.
We will share the results of this survey with local NHS managers in a report. We will also publish the report online so that members of the public can read it and also read how local NHS organisations respond to our recommendations.
As with all of our surveys, you can contact us by calling 01865 520520 or emailing hello@healthwatchoxfordshire.co.uk we can help to fill in the survey. Or people can talk to a member of the Healthwatch Oxfordshire team in more detail about their experiences.
Should you wish to have a hard copy poster to display, please let me know and I can arrange to have one sent out to you.
Kind regards
Emma
Emma Teasdale
Community Involvement Officer
Mobile number: 07958 713812
Please note my working days are Monday to Friday
MS Self Management Programme – starts 3rd November – Free places available to book now
Hope For The Community CIC are running a group peer self-management programme for people living with MS to improve their wellbeing.
The Programme was co-created with people living with MS, healthcare professionals and researchers at Coventry University to make sure it is rooted in science.
The MS Self Management Programme is a digital programme and is starting on 3rd November and are keen to share the opportunity to join the programme with anyone living with MS.
Dr Anna Lynall
Project Delivery Lead
Hope For The Community CIC
Tel: 024 7736 0153
Our vision is for everyone to have the tools to lead a hopeful and flourishing life
Follow us on Twitter: @HOPE4TC