People with ME and the Covid vaccination

As part of the Forward ME group, we would like to share this statement:

“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 vaccine research Cort Johnson notes that every 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.”