Dr Charles Shepherd
Since January we have been collecting feedback from people with ME/CFS who have had a Covid vaccine.
At the start, this was mainly from health and social care workers who have ME/CFS and those over 70 years of age.
But with vaccination now being carried out in people who have health conditions in Group 6 of the JCVI priority list, we are also receiving feedback from other people with ME/CFS.
Today’s website poll asks the question:
We want to know if you experienced any of the side-effects attributable to the vaccines and if the vaccination might have resulted in an increase in ME/CFS symptoms.
- You can access the Covid Vaccine Poll by visiting this page of the MEA website.
- This section of the MEA website gives access to free Covid information, the Group 6 eligibility template letter, and to send us your experiences.
Do people with ME/CFS want the vaccine?
The last ME Association website poll asked if people with ME/CFS were going to have a Covid vaccination.
It resulted in over 6,000 responses – the largest number of votes in poll we have ever received – although it did run for 7 weeks.
This is how people voted in the poll that we closed this morning:
Are you going to have a COVID-19 vaccine when it is made available to you?
- Yes - Definitely (57%, 3,439 Votes)
- Yes - I have already been vaccinated (12%, 720 Votes)
- Yes - Probably (7%, 399 Votes)
- Not sure - waiting for more information on possible side effects (5%, 332 Votes)
- Not sure - waiting to see what happens to other people with ME/CFS who are vaccinated (12%, 745 Votes)
- Probably not (2%, 149 Votes)
- Definitely not (5%, 276 Votes)
Total Voters: 6,060
Covid vaccines and ME/CFS
Based on the feedback we have received, most people with ME/CFS seem to be coping okay with the Covid vaccines.
The commonly reported side effects – increased fatigue, headache, mild fever, muscle aches, pain or swelling at the injection site – are seemingly resolved after a few days and are not having a major effect on ME/CFS symptoms.
However, a small but significant minority are experiencing a more severe or prolonged reaction, or an exacerbation of their ME/CFS symptoms.
We don’t know the extent to which this might be a result of the vaccine itself, or if people are reacting to the sudden need to be more active when they have to travel to the vaccination centre or GP surgery.
Travel and all that this involves could have a negative effect on symptoms especially if a person has been housebound by ME/CFS and/or self-isolating/shielding.
For people who are bedbound, with severe or very severe ME/CFS, and who have been shielding, arrangements should be made with the GP to have a vaccine delivered at home.
As pointed out in the MEA information leaflet on Covid vaccines, we know that ME/CFS can occasionally be triggered by a vaccination and that some people experience an exacerbation of symptoms after having a vaccine. But this is a risk that obviously has to be balanced with the advantage of obtaining a high degree of protection against a life-threatening infection that is likely to remain in circulation for many months to come.
Interestingly, we have also received feedback from people who have had the Covid vaccine and experienced an improvement in ME/CFS symptoms – although this appears to have been short-lived.
Your help is needed
We now want to collect more feedback from people who have had a Covid vaccine – which is why we are now conducting this simple website poll which we’ll keep open for the next couple of months.
Please take part even if you have already provided feedback about your vaccination to the ME Association.
Also note that the tools we use for this website survey do not allow us to collect more detailed information – such as your age, severity of ME/CFS, or which vaccine you had – all of which may influence the sort of reaction you experienced.
You can send us more detailed feedback by email to: Feedback@meassociation.org.uk
- ME Association information leaflet covering all aspects of Covid vaccine and ME/CFS.
- MEA pro forma template letter to GPs and letter from Matt Hancock – This explains why people with ME/CFS should be included in group 6 of the JCVI vaccine priority list.
- Summary of some of the feedback on vaccine experiences that we have received.