COVID-19 vaccine eligibility, safety and ME/CFS – what we know so far

December 10, 2020

by Dr Charles Shepherd, Medical Adviser, ME Association

With the start of vaccination against COVID-19 occurring this week, we are receiving queries about where people with ME/CFS will be on the priority list.

The Joint Committee on Vaccination and Immunisation (JCVI) has produced a list of different groups of people in the order that they are going to be offered one of the new COVID-19 vaccines. Find the JCVI list HERE.

At the top of the list are people who are living and working in care homes, health workers, the very elderly (ie those over 80 years of age) and people who are extremely vulnerable to COVID-19 – because they have a very significant risk of developing serious or life-threatening complications if they catch COVID-19. Which is fair enough….

And while anecdotal evidence indicates that people with ME/CFS are likely to suffer an exacerbation or relapse of their ME/CFS symptoms if they catch COVID-19, there is no evidence to indicate that they are at significantly increased risk of developing serious or life-threatening complications.

So it will be an uphill struggle to get ME/CFS onto the very high priority list.

There is then a group of people with what are termed by the JCVI as having ‘underlying health conditions' that also make them vulnerable in relation to COVID-19.  This list includes people with chronic neurological conditions.

ME/CFS should be included in the ‘underlying health conditions' list  – as it is classified as a neurological disease by both the WHO and NHS England: HERE.

And COVID-19 will almost certainly exacerbate pre-existing ME/CFS symptoms or cause a relapse of ME/CFS.

However it looks as though people on this list will only become high priority once the over-65 age group has been vaccinated.

So it seems unlikely that people with ME/CFS below the age of 65 will be offered a COVID-19 vaccine until March or April next year – but it could be sooner if supplies of the Oxford/Astra Zeneca vaccine are approved and released

We will continue to update you on what is happening in relation to all aspects of COVID-19 vaccines and ME/CFS.

In the meantime there is no point in contacting your GP to see if you can have a COVID-19 vaccine – unless you are in in one of the high priority groups who are going to be given the vaccine over the coming weeks.

How safe are these Covid-19 vaccines for people with ME/CFS

The safety data so far on all three vaccines indicates that they all have a potential to cause short-lived side-effects – ie sore arm, fatigue, slight fever – that are found with any other vaccine.

There is no indication at present of any serious side-effects with any of these vaccines.  

However, two cases of transverse myelitis has been reported in relation to the Astra Zeneca vaccine:

So, as with any other vaccine, it is possible that the COVID-19 vaccines will also cause a temporary exacerbation of flu-like ME/CFS symptoms.

And there is also a possibility that they could trigger a more significant exacerbation of ME/CFS symptoms.

At present, we have no data from the clinical trials as to what happens to people with ME/CFS with any of these vaccines – and I suspect that nobody with ME/CFS has taken part in any of the clinical trials.

This is data that is only going to come from patient evidence once people with ME/CFS start having the vaccine in 2021.

So everyone is going to have to make a personal judgement that involves:

1  A definite risk of some ME/CFS symptoms being exacerbated

2  A much lower risk of a more significant exacerbation of ME/CFS symptoms

3  The possibility that once very large numbers of people have been vaccinated we will learn about some rare but serious side effects.

4  A fairly high degree of protection from COVID-19 in return for taking these risks.

Life is full of risks and on a personal basis I will almost certainly be having a COVID-19 vaccine when I become eligible in 2021.

The ME Association

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