Coronavirus and M.E./CFS

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Covid-19 vaccine

Covid-19 vaccine and M.E.

This page was most recently updated on Tuesday 11 May 2021.

This page is based on advice offered by Prof Julia Newton, one of Action for M.E.'s medical advisers, and information from the UK Government. Our staff team are not medically trained and are not able to advise on having the vaccine, other than sharing information from the Government and our medical advisers.

There are currently three Covid-19 vaccines approved for use in the UK:

  • The Pfizer/BioNTech vaccine started to be rolled out from Monday 7 December 2020 after it was approved for use in the UK. The recommendation for approval came from the independent Medicines and Healthcare products Regulatory Agency (MHRA).
  • The Oxford University/ AstraZeneca vaccine was approved for use on Wednesday 30 December 2020, with rollout beginning on Monday 4 January 2021.
  • The Moderna vaccine became the third vaccine to be approved for use in the UK on Friday 8 January 2021, with rollout beginning on Wednesday 7 April 2021.

The British Society for Immunology has produced some infographics to explain how each different type works.

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).

Please see below for a joint M.E. charity statement on the Covid vaccines, followed by answers to the common questions we have been asked.

Joint M.E. charity statement on the Covid vaccines

We are receiving a very high number of enquiries from people with M.E. asking if they should have the Covid-19 vaccine, and when they should expect to be offered it. The 25% M.E. Group, Action for M.E. and the ME Association have collaborated to agree the following statement, also being shared by Forward ME.

Any vaccine which is approved will have been tested on people with long-term conditions, including looking at whether there are any differences in how well the vaccine works in people with a range of (but not all) health conditions.

However, at present we have no data from these clinical trials specifically relating to M.E./CFS. This means that vaccination must be an individual decision based on a clear understanding of the risks and benefits associated with it.

Covid-19 can have serious, life-threatening and potentially long-lasting complications, and there is no way to know how the virus will affect you. While it is possible there might be a minor reaction to the vaccine, this will almost certainly be much less severe than catching Covid 19 itself, particularly for those severely affected.

On Thursday 29 April, we reported on initial findings of our ongoing survey which asks people with M.E. who have experienced Covid-19 about the impact of this.

Potential risks are as follows:

  • As with most vaccines, there is a risk that the Covid-19 vaccine will exacerbate symptoms, particularly those which overlap with commonly reported vaccine side-effects, eg. fatigue, fever, muscle pain. In his summary of published Covid vaccine research Cort Johnson notes that every Covid vaccine has produced more side effects after the second dose than the first; and more side effects in younger people (under 55 years) compared to older people. Anyone who experiences side-effects should report this to the Medicines and Healthcare Products Regulatory Agency using its Yellow Card scheme.
  • There is a very small possibility that more serious side-effects could become apparent over time, as more people have the vaccine. Some people with M.E. are taking a “wait and see” approach for this reason, while shielding carefully in the meantime.
  • A very small number of people, with a past history of allergic reactions, have reported a severe allergic reaction to the Pfizer vaccine. UK government guidance for health professionals sets out more information on this; see also Anaphylaxis Campaign information.

Priority group 6 as listed by the Joint Committee on Vaccination and Immunisation (JCVI) includes people with “underlying health conditions which put them at higher risk of serious disease and mortality.” The main risk groups identified by the committee include “chronic neurological disease”. We believe this should include M.E., but it is not specified on the list.

In February 2021, the JCVI responded to a letter, sent by Dr Charles Shepherd on behalf of M.E. charities, that it is not currently willing to state that M.E./CFS should be included as a specific disease in Group 6 as an underlying neurological condition. It does stress though that the examples given are not exhaustive, and that “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.”

In April 2021, in response to a written parliamentary questions from Baroness Scott of Needham Market, Parliamentary Under-Secretary (Department of Health and Social Care) Lord Bethell confirmed:

"Within the broad set of clinical conditions within priority group six, GPs and other clinicians are able to add individuals to this group. They are able to use clinical judgement 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 the virus itself."

Further information on Covid-19 vaccines can also be found at the NHS Wales and NHS Scotland websites; you can also call the NHS Scotland's Covid-19 vaccine helpline on 0800 030 8013.

For information and support about M.E. or long Covid, please get in touch.

How safe are the vaccines?

The NHS website states:

“The (Pfizer/BioNTech) vaccine has met strict standards of safety, quality and effectiveness set out by the independent Medicines and Healthcare products Regulatory Agency (MHRA). Any coronavirus vaccine that is approved must go through all the clinical trials and safety checks all other licensed medicines go through. The UK has some of the highest safety standards in the world. So far, thousands of people have been given a Coronavirus vaccine and no serious side effects or complications have been reported."

There is no clinical data available on what would happen to someone with M.E. who has the vaccine. However, we know that vaccines can occasionally trigger M.E./CFS or exacerbate existing symptoms. A minority of people with M.E. also report being allergic to the preservative used in some vaccines. There will therefore likely be potential risks to taking the vaccine but there will also be risks – likely far greater – in contracting Covid-19. People who have M.E. will need to weigh up these risks before making an informed decision on whether to have the vaccine.

We reported on and summarised an online article from Sunday 3 January 2021 on the Health Rising website, in which M.E./CFS journalist Cort Johnson details information on Covid-19 vaccines for people with M.E. This article lists nine vaccines that have been approved or are going through approval processes. The article notes that pre-existing conditions haven’t had any effect on vaccine efficacy so far in trials, but that trials haven't included people with certain conditions, such as unstable chronic medical conditions. The article also presents opinions from several M.E. experts in the US regarding whether they think people with M.E. should take a vaccination.

We will add more information here as it becomes available.

Will people with M.E. have priority access to the vaccine?

The Joint Committee on Vaccination and Immunisation (JCVI) has published advice, setting out the order of priority according to clinical need, as follows (NB this advice on vaccination does not include pregnant women and those under the age of 16 years):

  1. Residents in a care home for older adults and their carers
  2. All those 80 years of age and over; frontline health and social care workers
  3. All those 75 years of age and over
  4. All those 70 years of age and over; and clinically extremely vulnerable individuals
  5. All those 65 years of age and over
  6. All individuals aged 16 years to 64 years with underlying health conditions [including "chronic neurological disease"] which put them at higher risk of serious disease and mortality, and those in receipt of Carer's Allowance
  7. All those 60 years of age and over
  8. All those 55 years of age and over
  9. All those 50 years of age and over

M.E./CFS is not mentioned, though the list is not exhaustive and eligibility for priority group 6 lists chronic neurological diseases as a qualifying illness. The JCVI advises:

“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. COVID-19 vaccine should be offered in such cases even if the individual is not in the clinical risk groups specified.”

We note the difficulties that people with M.E./CFS experience in securing flu vaccinations and it is likely that, unless M.E./CFS is specifically listed, similar challenges will be faced in accessing priority COVID-19 vaccination.

Action for M.E. Trustee Lucy Goodwill, who has M.E., noted that she was unable to receive priority for the vaccine due to M.E. not receiving any specific mention by the JCVI. Others have stated that, despite the above quote from the JCVI, their GPs have informed them that they're unable to move them into priority group 6 as their IT system is run on a national level, leaving them unable to override it. The situation is being closely monitored by Action for M.E. and other M.E. charities. We will take all possible opportunities to influence decisions made about this given that, as a neurological condition, M.E. should be included in the underlying health conditions criteria for priority group 6.

If you would like to highlight this to your GP, you can use our template letter, which we've already heard success stories about from people with M.E. We would encourage you to edit it to add your own voice, to encourage a personalised response, and do let us know how you get on. Feedback so far indicates that some GPs have confirmed inclusion in group 6 as a result, while others have not.

How will the vaccines work?

The New Scientist’s website details the science behind the Pfizer/BioNTech vaccine, while The Guardian offers this explanation:

“The Pfizer/BioNTech Covid jab is an mRNA vaccine – a cutting-edge technology. The vaccine works by introducing into the body genetic material, called mRNA, that contains the instructions to make the so-called “spike” protein of the coronavirus. In response to these proteins, the body’s immune pathways are activated – a response that offers protection should we encounter the virus itself.”

The Oxford/AstraZeneca vaccine uses a weakened version of a common virus which causes a cold in chimpanzees. This technology has already been used to produce vaccines against a number of pathogens including flu, Zika and Middle East respiratory syndrome (Mers).

The Moderna vaccine uses the same mRNA approach as the Pfizer vaccine. Both need to be stored in freezers (-20C for Moderna, -75C for Pfizer), while the Oxford/AstraZeneca vaccine is stable at fridge temperature.

Will the vaccine be mandatory?

Boris Johnson has been clear that there are no plans to make the vaccine mandatory.

On 11 November, independent fact-checkers said they have seen social media posts that “suggest a government document indicates that the Covid-19 vaccine will be mandatory and the government will use the Mental Health Act to section people who refuse the vaccine. This is not the case. The document in question was not written by the government—it was submitted as evidence from a group of law and ethics experts to a parliamentary committee that asked for evidence about how Covid-19 may affect human rights. What it discusses is in no way government policy, or even being proposed by the government.”