Coronavirus and M.E./CFS
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COVID-19 vaccine

Covid-19 vaccine and M.E.

A Coronavirus vaccine developed by Pfizer/BioNTech started to be rolled out from w/c 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). A second vaccine, developed by Oxford University/ AstraZeneca was approved for use on Wednesday 30 December 2020, with rollout beginning on Mon 4 Jan 2021. The Moderna vaccine became the third vaccine to be approved for use in the UK on Friday 8 January 2021, with rollout scheduled to begin in the spring.

We endeavour to share information on the various Covid vaccines as the UK Government produces it. This page was most recently updated on Wednesday 20 January 2021 and is guided by advice offered by Prof Julia Newton, one of Action for M.E.'s medical advisers. 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.

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.

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” and we believe this includes M.E. The ME Association has written to the Chief Medical Officer for England, Prof Chris Witty, to seek confirmation.

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 contact our Crisis, Advocacy and Support Service.

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 which put them at higher risk of serious disease and mortality
  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.

While M.E./CFS is not mentioned, the updated JCVI advice from 30 Dec 2020 now recommends that carers who are in receipt of Carer’s Allowance or are the main carer of a person whose welfare may be at risk if the carer contracted COVID should be included in Priority 6 alongside people with underlying conditions.

The situation is being closely monitored by Action for M.E. and other M.E. charities and, if we have any possible opportunity to influence this we will as we believe people with M.E. should be included in the priority group “All individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality.”

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.”