The ME Association: Covid Autumn Booster Vaccine Information (2023)

Even though Covid-19 hasn't gone away, many people have been slowly returning to normal or near normal life. However, while official statistics indicate that levels of Covid infection are still fairly low this reflects the fact that very little testing is being carried out. There are new variants of the virus appearing, hospital admissions are steadily rising, and other indicators of Covid in the community confirm the rising numbers. So, as we have been pointing out on ME Association social media, people do need to start taking sensible precautions to reduce the risk of catching Covid and should seriously consider having a Covid Autumn Booster.

• NHS England: NHS flu and covid vaccine programmes brought forward due to risk of new covid variant | 30 August 2023

The Department of Health and Social Care (DHSC) announced recently how they intend to provide a Covid Autumn Booster vaccine to selected groups of people who they regard as being at increased risk from the Covid-19 virus and variants.

Vaccine eligibility

ME/CFS eligibility

Anyone with ME/CFS who wants to have an Autumn Covid Booster and is aged under 65 will have meet one of the above eligibility criteria in order to do so.

• In most cases you will need to be considered in a ‘clinical risk group’ as defined by the Covid Chapter of the UK Health Security Agency (UKHSA) Green Book (updated 04 September 2023).
• Table 3 (page 23) and Table 4 (page 25) refer to people with a ‘chronic neurological disease’ being eligible (adults and young people).
• While it doesn’t specifically mention ME/CFS, it does include Multiple Sclerosis and states that the list of examples is ‘not exhaustive’ and can include ‘related or similar conditions.’
• As ME/CFS is classified as a neurological disease by the World Health Organisation (which is accepted by the NHS) and can cause a similar level of disability to Multiple Sclerosis it should therefore qualify. In addition, the statement on page 19 says:

“The examples in tables 3 and 4 are not exhaustive, and, within these broad groups, the prescriber may need to apply clinical judgment to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from COVID-19 itself.”

• As there is good evidence of a Covid-19 infection causing an exacerbation or relapse of ME/CFS, we believe that people with ME/CFS should be able to have an Autumn Booster if they want to have one, especially if they are severely or very severely affected and potentially at greater risk.  

• We have produced a Template letter that you can use when speaking with a GP if you aren’t called for a Booster vaccine automatically and decide to try and get one.

Should I have a Covid Booster?

Before deciding if you want a Covid Booster it's important to take note of the pros and cons of having this vaccine:

• On the positive side, it is likely to produce a significant degree of protection against catching Covid-19 over the coming 6 to 12 months (if you have had all the Covid vaccines). We know that people with ME/CFS who catch Covid are (as with any other infection) at increased risk of having an exacerbation or relapse of their ME/CFS especially if they are severely or very severely affected.
• On the other hand, we know that a small but significant number of people with ME/CFS have experienced an adverse reaction to a Covid vaccine – sometimes severe and persistent. In this situation deciding to go ahead and have another vaccination is a difficult decision to make.

“On a personal basis I have had 4 Covid vaccinations without any problems. I had the Pfizer Autumn Booster last year which was followed by a fairly severe adverse reaction – a red swollen leg that was probably the result of a vasculitis.

“Having had 4 vaccinations without any problem I am probably going to go ahead and have an autumn booster but not with the Pfizer vaccine. However, other Trustees and staff members with ME/CFS have had different experiences with the Covid vaccines and Boosters and may not make the same decision as me.

“It became quickly apparent from the large number of reported experiences that we received last year, and which we continue to receive, that people’s reactions or non-reactions are very mixed, and that no clear determination or recommendation can be made in regard to ME/CFS. Therefore, it is very much a personal decision.”

Dr Charles Shepherd.

Another option, which is currently being considered by the DHSC, is to allow people who are not in an eligible group to purchase a Covid Booster – probably from a pharmacy – like you would if you wanted to pay for a Flu vaccine. But no firm decision on this proposal has yet been announced.

Whatever decision you make it's also important to also keep to all the usual ways of reducing the risk of catching Covid by:

• Handwashing frequently.
• Avoiding contact with people who have infective symptoms.
• Avoiding crowded or badly ventilated indoor spaces.
• Wearing a mask in places where you are in close contact with other people.

Feedback

As always, please let us know if you have had any problems obtaining an Autumn Covid Booster and if you do have one whether you have had any adverse reactions. Please email: feedback@meassociation.org.uk and title your email ‘Autumn Covid Booster’.

We will be creating a website survey so that you can share your decisions and experiences of the Covid Booster. This should be available in the next few days and will seek Flu vaccination feedback as well. We will keep the survey open until the New Year.

Medical disclaimer

The information provided by the ME Association and Dr Shepherd should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care and who knows you well. Seek personalised medical advice should you have ME/CFS and decide to have the Autumn Covid Booster vaccination, especially if you experience any new or worsened symptoms afterwards. Don't assume they are simply the result of having ME/CFS.