We recently provided extensive information on the pros and cons of having the Covid Booster and Flu vaccine, then we produced leaflets on the topics and included template letters to help you obtain either vaccine for free on the NHS.
- The ME Association: Autumn Covid Booster Information (2023).
- The ME Association: Flu Vaccine Information (2023-24).
We have since been running a website survey asking you about your decision and experiences. The response to the survey and by email has been mixed. Some people with ME/CFS or Long Covid were able to get a free vaccine on the NHS if they chose to have one, while others met with resistance and were refused.
What did you decide? Have you had either the Covid Booster or Flu vaccine? Did you meet with any resistance from the NHS? Did you decide on a private Flu vaccine? How did either vaccine affect you?
This survey has now closed and the results are shown below:
Total Entries: 614
Do you have a diagnosis of ME/CFS?
Do you have a diagnosis of Long Covid?
Have you decided to have the 2023 Autumn Covid Booster vaccination?
Have you decided to have the 2023-24 Flu vaccination?
Did you experience a reaction to any Covid vaccine before the 2023 Autumn Booster?
Do you remember the name of the vaccine you were given?
What sort of reaction did you receive from the Covid vaccination before the 2023 Autumn Booster?
Did you or your doctor report this adverse reaction to the Covid vaccination on the Yellow Card reporting system?
Did you have the 2022-23 Flu vaccination?
Did you experience any reaction to the 2022/23 Flu vaccination?
What sort of reaction did you receive from the 22/23 Flu vaccination?
Did you or your doctor report this adverse reaction from the 22/23 Flu vaccination on the Yellow Card reporting system?
Did you experience any reaction to the 2023 Autumn Covid Booster?
Do you remember the name of the vaccine you were given for the 2023 Autumn Booster?
What sort of reaction did you receive from the 2023 Autumn Covid Booster?
Did you or your doctor report this adverse reaction from the Autumn Covid Booster on the Yellow Card reporting system?
Did you experience any reaction to the 2023-24 Flu vaccination?
What sort of reaction did you receive from the 2023-24 Flu vaccination?
Did you or your doctor report this adverse reaction from the 2023-24 Flu vaccination on the Yellow Card reporting system?
E: Feedback@meassociation.org.uk
Thank you!
Personal experience
A supporter with ME/CFS describes her experience and gives her opinions on trying to get a Covid Booster vaccine.
On the 16 November 2023 I emailed the ME Association about my attempt to be allowed a Covid Booster this Autumn as I am below 65yrs of age.
I had printed off the template letter and sent it and my request to have the vaccine into my G.P.'s Surgery. I was disappointed with the response – I am not allowed to have a Covid Booster.
I think the problem is 2-fold. We have a Government who has very little concern for the long-term sick as it is, and they are advised by the JCVI who still do not accept that ME/CFS is a bio-medical illness.
In my view, there are a large number of GPs who still regard it as a ‘psycho-social' condition and do not accept the new NICE Guideline on ME/CFS and its recommendations.
While ME/CFS is classed by the World Health Organisation as being neurological, it is not listed by name in the vaccine eligibility criteria, which means it can be ignored when people ask for a vaccine.
I find it hard to understand that an illness that so closely resembles Long Covid (more than other neurological diseases that mentioned by name) is not thought serious enough to warrant being specifically included in the eligibility criteria.
Many healthcare professionals who were previously fit and well and caught Covid in the first wave of 2020 and in the waves since then. Sadly, some went on to develop Long Covid and still remain ill. So why isn’t the message being received?
Being severely affected by ME/CFS for many years I am not concerned about Covid-19 killing me quickly, but I am concerned about the possibility of being made more ill than I am if I was to become infected.
I feel hurt that my suffering matters so little. It feels like the narrative around ME/CFS is never going to change for the better in my lifetime.