Coronavirus and M.E./CFS

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Covid-19 vaccine and booster

Covid-19 vaccine and booster

This page was updated on Thursday 7 April 2022.

Everyone with M.E. experiences the condition individually and this means that there may be a range of reactions medication and vaccines. Having the Covid vaccine/booster or flu jab is your decision, based on your personal experience and your assessment of the potential risks and benefits. We are sharing evidence-based information from the UK Government and NHS below, in the form of frequently asked questions, to help you make an informed decision.

You may also wish to read Cort Johnson's blog (from July 2021, with comments ongoing) including the results of his poll of vaccine experiences by people with M.E. Please be aware this is anecdotal information, and not a peer-reviewed, published study.

Our Information and Support team can talk you through this information, and support you to think through your options, but they are not medically trained. For clinical advice about this or any other matter, please speak to your GP.

If you experience an adverse reaction to the vaccine, please use the Coronavirus Yellow Card reporting site to share this with the Medicines and Healthcare products Regulatory Agency. To report a Yellow Card for a side effect by phone, please call freephone 0800 731 6789 (Monday to Friday 9am to 5pm).

What sort of vaccine will I get?

The COVID-19 vaccines currently approved for use in the UK are:

  • Moderna vaccine
  • Oxford/AstraZeneca vaccine
  • Pfizer/BioNTech vaccine
  • Janssen vaccine (not currently available)

The NHS Coronavirus vaccine page says:

“People aged 75 and over, people who live in care homes for older people, and people aged 12 and over who have a weakened immune system, will be offered a spring booster […] You cannot usually choose which vaccine you have. If you book online, you'll only be offered appointments for vaccines that are suitable for you […] You should have the same vaccine for both your 1st and 2nd doses, unless you had serious side effects (such as a serious allergic reaction) after your 1st dose.”

Am I eligible for the spring booster?

NHS advice about the spring booster dose says:

“If you have or had a severely weakened immune system when you had your first 2 doses of the COVID-19 vaccine, you may have been offered an additional primary dose (3rd dose) of the vaccine. You can get a booster dose from 3 months after you had your additional primary dose. A GP or your hospital specialist will invite you for your booster dose when it's due. You can also book your appointment online or go to a walk-in COVID-19 vaccination site.”

People with a severely weakened immune system include those who had or have:

  • a blood cancer (such as leukaemia or lymphoma)
  • a weakened immune system due to a treatment (such as steroid medicine, biological therapy, chemotherapy or radiotherapy)
  • an organ or bone marrow transplant
  • a condition that means you have a very high risk of getting infections
  • a condition or treatment your specialist advises makes you eligible for an additional primary dose.

Additionally, the Joint Committee on Vaccination and Immunisation (JCVI) says:

"Many of the oldest adults, and therefore most vulnerable, will have received their most recent vaccine dose in September or October 2021. These individuals are at higher risk of severe COVID-19, and with the lapse of time, their immunity derived from vaccination may wane substantially before autumn. Therefore, as a precautionary strategy for 2022, JCVI advises a spring dose, around 6 months after the last vaccine dose, should be offered to:

  • adults aged 75 years and over
  • residents in a care home for older adults
  • individuals aged 12 years and over who are immunosuppressed, as defined in the Green Book."

The Green Book includes those with chronic neurological disease in its clinical risk groups (table 3 on page 14), and stresses that "the examples above are not exhaustive, and, within these groups, the prescriber should 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.

If you think you are eligible because of the impact and/or severity of your M.E. symptoms, you will need to speak to your clinician to obtain an invitation to get the booster. If you need support to communicate your needs to your clinician, we may be able to offer advocacy support. Please call us on 0117 927 9551 or send us an email.

I had an adverse reaction to my first/second/both Covid vaccines; I’m don’t know whether to have the booster. Can you give me any useful information to help me make my decision?

A randomised study by Flaxman et al (September 2021, The Lancet) found that, in participants aged 18 – 55 years showed better immunity after the booster than after the second dose, and less side effects as compared with first doses. This study used people from the general population, and not people with M.E.

The UK Health Security Agency’s leaflet Covid-19: Your guide to booster vaccination, says: “If you had serious side effects after any previous dose you may be advised to avoid or delay further vaccination. You should discuss this with your doctor or specialist."

I’m concerned about the “mix n match” approach to booster vaccinations; I’ve heard that most people are going to be offered mRNA (Pfizer or Moderna) even though they may have had Astra-Zeneca last time. What do we know about increased risk of adverse reactions?

Page 3 of NHS instructions to health providers, Immediate action required for Phase 3 booster vaccinations, notes that the JCVI advises a preference for the Pfizer vaccine to be offered as the third booster dose, irrespective of which vaccine was used initially. "Alternatively, individuals may be offered a half dose of the Moderna vaccine, which should be well tolerated and is also likely to provide a strong booster response."

I’m worried about having the booster and the flu vaccine at the same time. Is this safe? What might the impact be?

Some people who can get a booster dose of the COVID-19 vaccine are also eligible for the annual flu vaccine.

A September 2021 paper published by the Combining Influenza and COVID-19 Vaccination (ComFluCOV) study team tested the impact of receiving two vaccines on the same day, one in each arm. More than 750 people took part, aged 18 years and over, and “participants with other co-morbidities that made them eligible for routine influenza vaccine were included.”

The most common side effects were pain at the vaccination site and tiredness. These were mainly mild or moderate. More people experienced side effects when the two vaccines were given together than when the two vaccines were given separately, but the difference between the groups was small.

The BMJ reports: "A strength of the study was that it did not exclude people who were pregnant, had severe uncontrolled medical problems, were immunocompromised, or aged 65 or over, so it was representative of the population who were most likely to receive both flu and covid vaccines. However, two of the groups had lower recruitment than planned, which was related to expiry dates of some flu vaccines and the timing of the roll out of specific covid-19 vaccines in the UK."

The NHS says: “Flu vaccination is important because:

  • more people are likely to get flu this winter as fewer people will have built up natural immunity to it during the Covid-19 pandemic
  • if you get flu and Covid-19 at the same time, research shows you're more likely to be seriously ill
  • getting vaccinated against flu and Covid-19 will provide protection for you and those around you for both these serious illnesses.

“If you've had Covid-19, it's safe to have the flu vaccine. It will still be effective at helping to prevent flu.”

It's important to note here that this is general advice directed at the general population. For someone with a long-term chronic condition like M.E., you should consider how you have tolerated vaccines in the past.

The flu vaccine is given free on the NHS to people who:

  • are 50 and over (including those who'll be 50 by 31 March 2022)
  • have certain health conditions, including neurological conditions
  • are pregnant
  • are in long-stay residential care
  • receive a carer's allowance, or are the main carer for an older or disabled person who may be at risk if you get sick
  • live with someone who is more likely to get infections (such as someone who has HIV, has had a transplant or is having certain treatments for cancer, lupus or rheumatoid arthritis)
  • frontline health or social care workers.

As our template letter for your GP sets out, people with M.E should be included in the "neurological conditions" category highlighted in bold above.

I haven’t had my first vaccine and the coverage of booster jabs is making me reconsider the issue. Can I still get my first vaccine?

The UK Health Security Agency’s leaflet COVID-19: Your guide to booster vaccination says: “The booster is being offered at least 6 months after your last dose. Like your previous doses, the vaccine will be given in your upper arm […] If you had serious side effects after any previous dose you may be advised to avoid or delay further vaccination. You should discuss this with your doctor or specialist […] If you have not yet had either of your first 2 doses of the vaccine you should have them as soon as possible. You will still need the booster but the timing of it will depend on when you had your first 2 doses.”