After Covid-19 Vaccination, Health of People with ME/CFS More Likely to Worsen Compared to Controls 

In survey, 19% of people with ME/CFS said health worsened after vaccination compared to 4% reported by controls.

In a recent survey by the You + ME Registry, which gathers research data on ME/CFS, found that the health of people with ME/CFS is significantly more likely to worsen after Covid-19 vaccination compared to controls.

About five months after receiving their first or only shot of Covid-19 vaccine, 19% of survey participants with ME/CFS indicated their health had worsened, 9% reported that it had improved and 73% responded that it had not changed. 

This compares to 4% of controls (people who did not have ME/CFS) who said their health had worsened, 7% who indicated it had improved and 89% who reported it had not changed. (See Table 1.)

”The ME/CFS community has raised concerns about how Covid-19 vaccination might affect people with ME/CFS. Our survey suggests that people with ME/CFS are much more likely to report that their health had worsened after vaccination compared to controls,” said Oved Amitay, CEO and president of Solve M.E., which founded the You + ME Registry. 

“Yet, vaccination may still be a better option for people with ME/CFS than risking Covid-19 infection and spreading the virus. Individuals and their healthcare providers should work together to make these decisions,” Amitay continued. “Also, these results do not tell us if the reported health changes were caused by vaccination, and more research is needed.”

Additionally, differences in post-vaccine health status by vaccine manufacturer were not statistically significant. (See Table 2.) 

Survey results are based on data collected by the You + ME Registry, which gathers and shares research data on post-viral illnesses. Some participants did not answer every question. Survey data were collected between July 14, 2021 and October 22, 2021.

Table 1. Health Status 22 Weeks* After First/Only Covid-19 Vaccine Shot** 

Cohort Health Did Not Change*** Health Improved Health Worsened***
ME/CFS 73% 9% 19%
Controls 89% 7% 4%

*22 weeks is the median amount of time after vaccination that health status was reported by participants.
**Analysis based on 457 total respondents
***ME/CFS and control differences are statistically significant at  ⍺=0.05.

Table 2. Health Status 22 Weeks* After First/Only Covid-19 Vaccine Shot by Vaccine Manufacturer**

Vaccine Health Did Not Change*** Health Improved*** Health Worsened***
J&J 72%  8% 20%
Moderna 73% 10% 16%
Pfizer 77% 7% 16%

*22 weeks is the median amount of time after vaccination that health status was reported by participants.
**Analysis based on 457 total respondents
***Indicates differences in post-vaccine health status by vaccine manufacturer were not statistically significant at ⍺=0.05.

 

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