MS Society’s ‘Extra Costs of MS’ survey

The MS Society has launched a survey for people in the UK who have MS, or who live with someone who does, to find out about the extra costs of MS.

The increasing cost of living is putting pressure on people across the UK and MS can cause living costs to mount up even further. The MS Society want to understand more about these costs and how they impact on people’s lives and will use the results of this survey to inform a UK-wide campaign this autumn. 

Your responses will be anonymous unless you agree to help with more research and provide contact details at the end of the survey.

You can fill the survey out online at mssoc.uk/3uZLDSa

If you would prefer to complete this survey on paper or by telephone, please contact evidence@mssociety.org.uk or call 020 3873 6942

Behind the headlines: Could an immunotherapy treatment for the Epstein-Barr virus (EBV) treat MS?

A new immunotherapy treatment in a trial for progressive MS hit the headlines recently. News reports say it could reverse or stabilise the progression of MS by targeting the Epstein-Barr virus (EBV). We looked behind the headlines to find out more.

The trial was already underway when a study provided the strongest evidence yet that EBV may play a key role in causing the development of MS. The experimental immunotherapy, called ATA188, involves transplantation of immune cells from donors without MS who have EBV, into people with MS. But these aren’t just any immune cells. They patrol the body specifically for EBV-infected cells and destroy them.

During the trial, 24 people had the treatment for one year at varying doses and their level of disability was measured using the Expanded Disability Status Scale (EDSS). This mostly focuses on walking ability, but also measures other things like balance, eyesight and memory.

Early data from the trial showed that after 12 months on the trial, 5 people had worsening of their EDSS, 7 had an improvement, and 13 had no change.

This is a very early trial and final results haven’t been reviewed by other scientists yet so it’s too soon to conclude that the treatment could have a positive effect on someone’s MS.

Researchers are trying to find out what EBV does in the body that could lead to the development of MS. Recent research suggests proteins on EBV-infected cells and some proteins in our nervous system look very similar. So the immune system could attack both by mistake in people with MS.

A larger trial is now being conducted, which will initially recruit 80 people with progressive MS in the US and Australia over the next 5 years. So it could provide stronger evidence on ATA188.

For more on this story, visit the MS Society website at https://mssoc.uk/3OFYT6i

Research and MS, online webinar with the MS Society, Thursday 21 April

In MS Awareness Week, find out about the science behind MS and some of the latest developments in MS research. It will take place on Thursday 21 April 2022 at 7pm

Join the MS Society Research team to find out about areas of work they are already funding, get up-to-date information on the latest ground-breaking research, and how you can get involved.

Want to find out more about our trials like Octopus or ChariotMS? Or are you a healthcare professional wanting to find out more about MS? This webinar is for you.

There will be a chance to ask questions before and during the webinar.

Click here to find out more

MS Trust webinars: MS Awareness Week

During MS Awareness Week the MS Trust will be hosting a series of webinars, covering everything from symptom management to work and finances. The webinars will feature tips and tricks from professionals who are trusted experts in their fields, along with people with MS who have generously agreed to share their own experiences.There will also be the opportunity to ask questions during the sessions. Schedule of webinars:

  • Work and MS – Monday 25 April at 6pm
  • Thinking and memory problems in MS – Tuesday 26 April at 1pm
  • MS research – Wednesday 27 April at 6.30pm
  • MS fatigue – Thursday 28 April at 11am
  • Exercise and MS – Friday 29 April at 5pm

Sign up today:https://mstrust.org.uk/get-involved/ms-awareness-week

Spasticity online information session with MS-UK – Monday 25 April 2022

MS-UK are hosting a webinar called Spasticity – What it is and practical ways to manage the effects of spasticity. 

In this information session, Dr Gretchen Hawley will be discussing what spasticity is, how to recognise spasticity vs tightness and how you can manage its effects independently using the power of stretching. The session will last for approximately 60 minutes with time for questions at the end.

Session outline

  • What is the difference between tightness, spasticity, and spasm?
  • Which muscles tend to get tight/spastic?
  • Stretching parameters
  • Practice stretches
  • Q & A

Key information

  • Date: 25 April 2022
  • Time: 2pm
  • Where: Online
  • Find out more and sign up by clicking here

Free bike


Bike up for grabs, no money required please make a donation to the centre instead. 

Contact Sue at the Centre if you are interested.

Charity Craft Fair

Charity Craft Fair, Saturday 9th April 10am-3pm, Didcot Civic Hall, 50p entry on the day, under 12’s free. 

All profits going to Pet Pals and Oxfordshire Animal Sanctuary.  Our lovely Nandi Ablett will have a craft stall there.

London Marathon


We have a place for the runner for the London Marathon this year on 2nd October. 

Do you know anyone who might be interested in the place? 

Do you know any local running clubs that might be interested?  Please let Sue know asap.