THOUSANDS of people living with multiple sclerosis are confused about whether it is safe for them to be vaccinated against Covid, as a charity called for clearer information.

Many people with MS fall into the clinically extremely vulnerable category and have been told to shield at home during the pandemic.

However, there is also uncertainty for many about the impact of the vaccine on current treatment regimes, with some worrying that it could trigger a relapse in their symptoms.

The Scottish Government said there were "very few" people on the clinically extremely vulnerable list for whom the vaccines would not be suitable. 

A survey of 3,191 patients on the UK MS Register found that 69 per cent would definitely take the vaccine when offered, but three quarters also said they wanted more advice.

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Nearly one in four (23%) said they wanted information on whether the vaccine would be effective in light of their treatment, as several of the disease-modifying therapies (DMTs) currently used for the condition weaken the immune system and mean that vaccines could be less effective.

A third (32%) of respondents said they wanted to know the risks of the vaccine causing a relapse or making their MS worse.

In MS, the body’s immune system mistakenly attacks myelin – the protective fatty coating around nerve fibres – leading to increased disability over time.

Several MS drugs work by dampening down this immune response, but vaccines are designed to enhance an immune response, which could mean that MS patients end up with less protection against Covid.

Medical advisors to the MS Society still recommend the vaccine for people on immunosuppressant DMTs as “even a reduced response is better than none”.

Research is ongoing to evaluate how well the vaccines work in individuals with weakened immune systems, but the Association of British Neurologists (ABN) say they do not expect Covid vaccines to cause a relapse in symptoms.

However, the MS Society says patients are currently struggling to speak to their own MS nurses or doctors for advice. One in three calls to the charity’s free helpline are now Covid-19 related, with callers frequently asking when they will receive the vaccine and whether the Pfizer-BioNTech or Oxford-AstraZeneca version is best for them.

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Carla Callaghan, a 36-year-old MS patient from Hamilton in South Lanarkshire, is among those taking the “difficult decision” to put the vaccine on hold so that she can continue with cladibrine, a treatment that stabilises the disease.

The communications professional was diagnosed with relapsing-remitting MS in 2013.

Ms Callaghan said: “Cladribine is a disease modifying therapy which essentially wipes out and rebuilds the immune system, therefore I can’t have both at the same time.

“This is a frustrating situation as due to the fact I am in the shielding category because of the treatment, I have been told I would be eligible for the vaccine in February.

“I am grateful for the ongoing support of my MS nurse who is always there to provide information – however the decision to protect against Covid or protect against MS progression ultimately falls on the patient.

“After a lot of thought, I’ve decided to go ahead with treatment as I feel that due to shielding, I can control the Covid risk as much as possible, but I cannot control the volatility of the MS.

“No one person with MS is the same and every single situation is different. More information needs to be available and people need the support and guidance to make the right choice around such a vital decision.”

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Morna Simpkins, MS Society Scotland director, said: “The NHS is under incredible pressure and we are hearing from people who are faced with an incredibly difficult choice and are desperately looking for more information from charities like us.

“We are keeping our online information on Covid-19 up to date by working closely with medical advisers. It is really positive that most people with MS intend to have the vaccine but we need the UK and Scottish Governments to support efforts to help answer the important questions that the priority group have.”

The MS Society’s free helpline can be reached on 0808 800 8000.

A Scottish Government spokeswoman said: “The vaccines are safe, approved by regulators, and we encourage all those who are able to get vaccinated.

"Every person receiving a vaccination has a personalised conversation with a clinical member of staff to enable them to ask any questions they have. That individual can then escalate any serious or complex concerns to more senior clinicians.

“Some people with MS will fall into the clinically extremely vulnerable (CEV) category and will be on the shielding list, having been identified by their clinicians. There are very few people in the CEV group for whom the vaccine would not be suitable.

“People with MS who are on the shielding list will be vaccinated as part of group 4, and will have received the first dose of the vaccine by mid-February. People with MS who are not on the shielding list are likely to be included in priority group 6.

"MS patients’ own clinicians will be best placed to provide specific advice, while many will also be contacted by their own GP directly who will be able to provide specific clinical advice for their circumstances.

“The NHS remains open with public health measures in place to protect staff and patients, and we are doing everything we can to ensure we have sufficient numbers of staff on the ground who are well supported in these challenging times.”