glenn_chan
Active Member
I've been trying to collect data on this topic as I've noticed that an unusual number of ME/CFS and Long COVID patients show up in the vaccine injury support groups.
For some reason, getting the COVID vaccine is like playing Russian roulette (*IF* you have Long COVID or ME/CFS). This is what the data from React19, MEA UK, SolveME, and ANZMES is saying.
React19: Roughly 1 in 5 risk of significant worsening of symptoms in Long COVID patients following COVID vaccination. https://react19.org/react19-patient-led-research-risk-factors-survey-3/
ANZMES: 19.8% were reported as “worsened and not returned to baseline - relapsed”
https://t.co/fAEIL4xIJ7
Solve ME: In their survey, 19% of people with ME/CFS said health worsened after vaccination compared to 4% reported by controls. 9% of ME/CFS reported that their health had improved https://go.solvecfs.org/webmail/192652/227511355/3bb228a4c65aac09a28988cd9a47c13bd69e10d6f6f335ffef493dafcc272f5b
ME Association UK also has survey data, including data on hep B being the trigger blamed for the surveyee's ME/CFS.
meassociation.org.uk
Some people do get a lot better after COVID vccntn. However, the risk/benefit does not seem to be there.
One exception is a survey from LongCovidSOS. More than half improved after \/, with less than a fifth reporting that they got worse. Different results are likely due to survey design and how the survey question was phrased. https://longcovidsos.org/_files/ugd/8bd4fe_7301ed588cc44d1483e9fc8df7989a03.pdf?index=true
A Survivor Corps poll (that was cited in a pre-print) found favourable outcomes for vaccination. ~35% reported improvement, ~13% reported that they got worse. However... I can't verify the reliability of the data. (Too many deletions in that group.)
Other groups haven't published their data/analyses yet. PLRC ran a vaccine safety survey. Yale ran a vax study that's been troubled due to recruiting difficulties in the beginning. https://clinicaltrials.gov/ct2/history/NCT04895189?A=4&B=5&C=merged#StudyPageTop
Randomized controller trials would yield more reliable data. But unless such data is published, patients need to make decisions based on less reliable data. We should apply the pre-cautionary principle and go with where the data leads.
My take: The COVID vaccines simply do not have a good risk/benefit profile in people with chronic illness, especially given other alternatives available. More people need to have the courage to say what needs to be said. There's been enough suffering as it is.
For some reason, getting the COVID vaccine is like playing Russian roulette (*IF* you have Long COVID or ME/CFS). This is what the data from React19, MEA UK, SolveME, and ANZMES is saying.
React19: Roughly 1 in 5 risk of significant worsening of symptoms in Long COVID patients following COVID vaccination. https://react19.org/react19-patient-led-research-risk-factors-survey-3/
ANZMES: 19.8% were reported as “worsened and not returned to baseline - relapsed”
https://t.co/fAEIL4xIJ7
Solve ME: In their survey, 19% of people with ME/CFS said health worsened after vaccination compared to 4% reported by controls. 9% of ME/CFS reported that their health had improved https://go.solvecfs.org/webmail/192652/227511355/3bb228a4c65aac09a28988cd9a47c13bd69e10d6f6f335ffef493dafcc272f5b
ME Association UK also has survey data, including data on hep B being the trigger blamed for the surveyee's ME/CFS.
meassociation.org.uk
Some people do get a lot better after COVID vccntn. However, the risk/benefit does not seem to be there.
One exception is a survey from LongCovidSOS. More than half improved after \/, with less than a fifth reporting that they got worse. Different results are likely due to survey design and how the survey question was phrased. https://longcovidsos.org/_files/ugd/8bd4fe_7301ed588cc44d1483e9fc8df7989a03.pdf?index=true
A Survivor Corps poll (that was cited in a pre-print) found favourable outcomes for vaccination. ~35% reported improvement, ~13% reported that they got worse. However... I can't verify the reliability of the data. (Too many deletions in that group.)
Other groups haven't published their data/analyses yet. PLRC ran a vaccine safety survey. Yale ran a vax study that's been troubled due to recruiting difficulties in the beginning. https://clinicaltrials.gov/ct2/history/NCT04895189?A=4&B=5&C=merged#StudyPageTop
Randomized controller trials would yield more reliable data. But unless such data is published, patients need to make decisions based on less reliable data. We should apply the pre-cautionary principle and go with where the data leads.
My take: The COVID vaccines simply do not have a good risk/benefit profile in people with chronic illness, especially given other alternatives available. More people need to have the courage to say what needs to be said. There's been enough suffering as it is.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
