Dr Charles Shepherd
For people with ME/CFS who have been unsuccessful in obtaining a priority vaccination from approaches made to GPs, the next recourse of action is to reach out to local clinical commissioning groups (CCGs) in England or the health boards in Wales or Scotland.
Unfortunately, the MEA have received very mixed feedback from people who have gone down this route. To help people with ME/CFS to get the vaccine we have produced letters for the England Clinical Commissioning Group, Welsh Health Board and Scottish GPs.
We are keen to hear people's feedback from these letters to see how effective they have been.
April's website poll asks the question:
This section of the MEA website gives access to free Covid information, the Group 6 eligibility template letter, and to send us your experiences.
The pro forma letters can be found here: MEA pro forma template letter to GPs and information for those in Scotland can be found here. There is also a letter from Matt Hancock – this explains why people with ME/CFS should be included in group 6 of the JCVI vaccine priority list.
Have you had your Covid vaccination?
The last ME Association website poll asked: Have you had your Covid vaccination? If so, how did you feel afterwards.
It resulted in almost 2,000 responses – this is how people voted in the poll that we closed this morning:
Have you had your Covid vaccination? If so, how did you feel afterwards? Choose up to 3 answers.
- I felt fine. No discernible issues even after a few days. (7%, 201 Votes)
- I felt surprisingly better for a few days after the vaccine. (2%, 70 Votes)
- I experienced side effects e.g., sore arm, increased fatigue, headache, chills, slight fever, etc. (19%, 547 Votes)
- I had some of the above side-effects and an increase in ME/CFS symptoms. (12%, 351 Votes)
- I had some of the above side-effects but no increase in ME/CFS symptoms. (9%, 260 Votes)
- I had all of the above side-effects and an increase in ME/CFS symptoms. (12%, 361 Votes)
- I had none of the above side-effects but had an increase in ME/CFS symptoms. (1%, 35 Votes)
- I had significant side-effects and/or a significant increase in ME/CFS symptoms and had to consult my doctor. (4%, 118 Votes)
- The issues resolved within days of the vaccination. (10%, 296 Votes)
- The issues resolved within a week of the vaccination. (8%, 228 Votes)
- The issues took longer than a week to resolve. (9%, 254 Votes)
- The issues remain unresolved and have led to a relapse in ME/CFS. (7%, 208 Votes)
Total Voters: 1,956
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.