The title shows a glass vial of a covid booster vaccine. The title reads the ME Association: Have you had your Covid Booster and Flu Vaccine?

The ME Association: Have you had your Covid Booster and Flu Vaccine? 

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. 

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: 613

Do you have a diagnosis of ME/CFS?

Choice
Percent
Total
Yes
96%
590
No
4%
23

Do you have a diagnosis of Long Covid?

Choice
Percent
Total
Yes
10%
64
No
90%
549

Have you decided to have the 2023 Autumn Covid Booster vaccination?

Choice
Percent
Total
Yes
55%
337
No
45%
276

Have you decided to have the 2023-24 Flu vaccination?

Choice
Percent
Total
Yes
61%
372
No
39%
241

Did you experience a reaction to any Covid vaccine before the 2023 Autumn Booster?

Choice
Percent
Total
Yes
56%
341
No
41%
251

Do you remember the name of the vaccine you were given?

Choice
Percent
Total
Astra Zeneca
23%
139
Moderna
8%
52
Pfizer
20%
124

What sort of reaction did you receive from the Covid vaccination before the 2023 Autumn Booster?

Choice
Percent
Total
mild reaction (that resolved in days)
18%
112
moderate reaction (that resolved in weeks)
16%
101
severe reaction (that resolved in months)
8%
49
very severe reaction (that remains unresolved)
13%
77

Did you or your doctor report this adverse reaction to the Covid vaccination on the Yellow Card reporting system?

Choice
Percent
Total
Yes
14%
85
No
41%
253

Did you have the 2022-23 Flu vaccination?

Choice
Percent
Total
Yes
60%
367
No
38%
235

Did you experience any reaction to the 2022/23 Flu vaccination?

Choice
Percent
Total
Yes
16%
98
No
43%
266

What sort of reaction did you receive from the 22/23 Flu vaccination?

Choice
Percent
Total
mild reaction (that resolved in days)
10%
63
moderate reaction (that resolved in weeks)
4%
26
severe reaction (that resolved in months)
1%
5
very severe reaction (that remains unresolved)
0%
3

Did you or your doctor report this adverse reaction from the 22/23 Flu vaccination on the Yellow Card reporting system?

Choice
Percent
Total
Yes
1%
7
No
15%
89

Did you experience any reaction to the 2023 Autumn Covid Booster?

Choice
Percent
Total
Yes
24%
147
No
52%
317

Do you remember the name of the vaccine you were given for the 2023 Autumn Booster?

Choice
Percent
Total
Astra Zeneca
1%
8
Moderna
4%
24
Pfizer
14%
84

What sort of reaction did you receive from the 2023 Autumn Covid Booster?

Choice
Percent
Total
mild reaction (that resolved in days)
15%
94
moderate reaction (that resolved in weeks)
6%
39
severe reaction (that remains unresolved)
2%
11

Did you or your doctor report this adverse reaction from the Autumn Covid Booster on the Yellow Card reporting system?

Choice
Percent
Total
Yes
2%
10
No
22%
133

Did you experience any reaction to the 2023-24 Flu vaccination?

Choice
Percent
Total
Yes
15%
92
No
62%
380

What sort of reaction did you receive from the 2023-24 Flu vaccination?

Choice
Percent
Total
mild reaction (that resolved in days)
10%
64
moderate reaction (that resolved in weeks)
4%
26
severe reaction (that remains unresolved)
0%
2

Did you or your doctor report this adverse reaction from the 2023-24 Flu vaccination on the Yellow Card reporting system?

Choice
Percent
Total
Yes
0%
1
No
15%
91

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. 

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