Impact of COVID infection on ME/CFS: surveys

Hi everyone,

I’m interested in any research or surveys which track the impact of a COVID infection on ME/CFS symptoms and/or functioning.

I’ve found this Dutch survey, but the results are focussed on the impact of the pandemic more broadly, rather than the impact of a COVID infection. Does anyone know if there are other surveys?

 

I have only seen one study that evaluates the risk of long Covid in people with ME: A preprint called "Severe acute infection and chronic pulmonary disease are risk factors for developing post-COVID-19 conditions 2022" (S4Me thread, preprint).

They estimate that people with ME/CFS have 4.69x the risk of long covid, with a 95% confidence interval of 2.78 to 7.92. See Table S3. This is quite preliminary, as the odds ratio for ME/CFS is based on very few people (Probably less than 20: They had two cohorts with 1,000 people, and the rates of ME in one was 1% and <1% in the other).

It's unfortunate we don't have strong research on this, it's an important issue.

 

Maybe there simply isn't a strong correlation, with ME and Covid, or ME and vaccines. Some people will report worsened ME from either of those, and some will report reduced ME from them.

 

I have a feeling that the UK ME association did a survey of their members online but I can't find it now.

 

We need something better, like a study following a large cohort of pwME.

 

Yes, we really do!

 

Thanks!