A rising number of people living with multiple sclerosis (MS) – some of whom are clinically extremely vulnerable to COVID-19 – say they do not feel they have received enough information about COVID-19 vaccinations to make a clear decision on whether to take it, new research shows.
The MS Register – which is part-funded by the MS Society – asked 3191 people with MS how they are feeling about the vaccine. To date, the majority (69.3%) have said they would definitely have it, but nearly three quarters (72.4%) admitted they would benefit from more advice. There are over 130,000 people living with MS in the UK.
MS damages nerves in the body and makes it harder to do everyday things, like walk, talk, eat and think. With over a dozen disease-modifying treatments (DMTs) currently available for the condition – some of which might reduce the effectiveness of vaccines – many said they wanted information on whether the vaccine would be effective in light of their treatment (23%), as well as wanting to know the risks of the vaccine causing a relapse or making their MS worse (32%).
As pressure on the NHS continues to mount, the MS Society is hearing from people unable to speak to their MS team – from neurologists to MS nurses – to ask these vital questions. This growing concern has meant one in three calls to the MS Society’s free Helpline is now COVID-19 related – with callers frequently asking when they will receive the vaccine and whether the Pfizer-BioNTech or Oxford University and AstraZeneca vaccine is best for their MS.
Suki Bhadal, 47, is a mortgage broker from Coventry and lives with relapsing MS. Since the pandemic hit she has been battling waves of depression and stress-induced vertigo. She has been on DMT Gilenya for five years and wants more information about the COVID-19 vaccine before committing to having it.
“My main concern is what the potential side-effects are. I know people will react differently to it, but the last thing I want is for it to weaken my immune system. I’ve lived with the unpredictability of MS for 12 years and it’s made me fearful of potential symptom triggers.
“MS has already sucked enough of the life out of me as it is, so I have to weigh up the risks – and to do that I need more information. I’m meeting my MS team next month and it’s at the top of my list to ask. But, ultimately, until I know all the facts I will not be railroaded into having it.”
Director of Research and External Affairs at the MS Society, Dr Sarah Rawlings, said:
“It is completely understandable that given the complex nature of MS, many of our community have questions about COVID-19 vaccines. With the NHS under incredible pressure, we are hearing from people with MS who cannot speak to their MS team and so are desperately looking for information from charities like us.
“We’re working closely with medical advisers to update our COVID-19 information on our website. But we need the Government to support our efforts to communicate answers to the priority group’s important questions. It is really positive that most people with MS intend to have the vaccine, but during this incredibly anxious time it’s vital they have all the information they need to help make their decision.”
Anyone affected by MS who needs support can call the charity’s free MS Helpline on 0808 800 8000. View the MS Society Medical Advisers release consensus statement on MS treatments and COVID-19 vaccines here.
The MS Register continues to collect important data from people with MS on Vaccinations and COVID-19. It is open to anyone who has MS in the UK. www.ukmsregister.org, if you haven’t signed up, please do, it provides essential data to us and to researchers in MS in the UK.