LongCovidSOS survey results: The Impact of vaccination on Long Covid symptoms

LongCovidSOS Reveal Results of Biggest Vaccine Survey to Date on the Impact of COVID-19 vaccination on Long Covid Symptoms

Written by Ondine Sherwood, originally published on LongCovidSOS.org

Read the report here, preprint link will be updated here

LongCovidSOS, in collaboration with Dr David Strain at the University of Exeter Medical School, Dr Jeremy Rossman, University of Kent and Zero Covid Alliance have published the results of the largest survey to date on the impact of vaccination for people with Long Covid.

Since the rollout of the COVID-19 vaccine programme, there has been concern among those with Long Covid that by stimulating the immune response, vaccination could exacerbate their symptoms. Others however have reported improvement after vaccination. It’s estimated that more than 1 million people in the UK are suffering from Long Covid with no proven treatment or cure, although research into the condition is now in the early stages.

Nine hundred people with very similar demographics to the population described in the ONS report in April responded to the LongCovidSOS survey. The survey looked at before and after scores across 14 common symptoms. The results demonstrate that:

• On average, people with Long Covid improved their symptoms by between 23% and 31% compared to their pre-vaccination score, dependent on vaccine
• 57% of people with Long Covid saw an overall improvement in their symptoms with 24% reporting no difference and 19% deteriorating.
• 27% of responders reported improvement in some or all of their symptoms, with no deterioration in any symptom.
• For only 3% did all symptoms get worse, often transiently. A further 4% had some worse and others unchanged
• 24% had a mixture of better/worse symptoms, but on average this group still improved by 20%

A subsequent analysis explored if there were any differences between the Adenoviral Vector vaccines (AstraZeneca/Oxford, Johnson & Johnson - 'AdV'), and the mRNA vaccines Pfizer-BioNTec and Moderna

• The Moderna vaccine reduced the average symptom score by 31% of the prior symptoms, closely followed by Pfizer at 24.4% and the AdV at 23%
• There was a significant advantage from receipt of the Moderna vaccine with respect to fatigue, myalgia/muscle pain and chest pain when compared to the AdV vaccines
• Approximately half of the people in the survey suggested that their symptoms were returning to their baseline at time of response, with the other half having had a sustained benefit.

Ondine Sherwood from LongCovidSOS said “We hope that people with Long Covid are reassured by the results of this survey, and don’t hesitate to have any of the vaccines on offer. These data show that many people do improve after vaccination and only a small proportion get worse. These changes might be temporary for some people. We hope that this information will lead to controlled clinical trials so that we can find out whether vaccines might have therapeutic use for those with Long Covid”

“The vaccination program is vital in preventing reinfection for people with Long Covid. These results do give cause for cautious optimism”, said Dr Strain of the University of Exeter Medical School. “Despite all of the caveats around observational data, self-reporting of symptoms and a lack of time control, the overwhelmingly positive response in people who had been suffering for up to 12 months, suggests that, at worst, vaccination will not cause a deterioration for those living with Long Covid, and potentially may be of benefit. If confirmed, this benefit could provide hope for many more, as it demonstrates that for some people, Long Covid does respond to treatment, and now we need to explore alternative therapeutics for the rest.”

Dr Jeremy Rossman from the University of Kent said: “This study is an important first step in showing that COVID-19 vaccines may be safe and beneficial for people with Long Covid.”