Website survey: What effect has Covid-19 had on your ME/CFS?

April 12, 2022

Why are we asking about the effect of Covid-19 on people with ME/CFS? 

Infections are the commonest trigger factor for developing ME/CFS and we know from previous outbreaks of coronavirus infections that these viruses can trigger an ME/CFS-like illness. New infections are also a well-recognised trigger factor for causing an exacerbation or relapse of ME/CFS. 

It therefore comes as no surprise that some people with ME/CFS have been telling us that catching Covid-19 has resulted in a significant and sometimes prolonged exacerbation of ME/CFS symptoms or a relapse. What we don’t know is how commonly this is occurring in the community or the impact that a Covid-19 infection has had on people with ME/CFS whether they were vaccinated or not. 

We are also asking about Long Covid because some people with ME/CFS are telling us that they have been given this as an additional diagnosis. At the time of the infection, they may have experienced an increase in the severity of ME/CFS symptoms and new symptoms relating to the infection. These have not resolved and have continued to cause additional functional impairment that could relate to the damage Covid-19 can cause to organs – the lungs, heart, etc. 

The results from this survey will help in the work we are doing to make sure that people with ME/CFS are still regarded as being clinically vulnerable to Covid-19 by the NHS and when in education or employment. We have a new To Whom It May Concern template letter that you can download for free and use whenever you need to explain the reasons why people with ME/CFS are still clinically vulnerable. 

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.

Dr Charles Shepherd
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