2/28/25, Make Visible:
'Understanding Complex Illness: Post-Pandemic prevalence of ME/CFS - what we can learn from the increase with Suzanne Vernon, PhD'
Vernon: “So, I think from a research perspective, the pandemic provided an unprecedented opportunity to study a large group of people that developed ME/CFS from the same exact trigger, and that being SARS-CoV-2 infection.”
“But again, the pandemic, the SARS-CoV-2 pandemic provided us with just an incredible opportunity now to look at this one entry way into ME/CFS.
Host: "I'm actually finding this with multiple researchers that whilst obviously post-COVID condition is not optimal for those suffering from it, and no one is saying that it's a good thing, it is providing this wealth of information that enables you to study these illnesses with that specific start point. And you have then gone on to write so many papers simply in those last five years, looking at the differences and similarities between the post-COVID and what you define as ME/CFS."
Vernon: "We focused on the 15,000 adult participants that were enrolled as the adult cohort in RECOVER...And then we just crunched the numbers. I mean, the nice thing about the RECOVER Initiative is it's a longitudinal study. So all of these people are followed every three months up until now. I mean, I think they're still being followed. So the data that was published in this paper was actually a data dump from as late as September of 2024. So really super, super fresh data and just an incredible data set.”
“RECOVER used, I mean, thank goodness they actually asked about post-exertional malaise and that's really thanks to a lot of advocacy from the ME/CFS community that was involved in the design of the RECOVER study.”
“I hope it's going to reveal a great deal about not only what is causing ME/CFS, but again, how it can be treated and what are the different targets that we can look at for treatment.”
Host: “Now, there has been a lot of criticism of RECOVER....I have heard it from researchers in the US who have said that they did not necessarily include sufficient people either with lived experience or with the depth of knowledge of post-viral conditions when they were designing their teams and their studies. You obviously, in terms of the data that you have been able to gather from RECOVER, have found it immensely useful. Can you tell me your thoughts on the way this is structured and the information that you feel that Recover should be able to bring us?”
Vernon: "...anyway, so it was a large group, 200 plus investigators initially, together with the NIH and people with lived experience involved in the design. Bateman Horne Center was one of the only groups that was involved in RECOVER that was actually, I think, funded to some level to be an investigator in there. So there was ME/CFS research and clinical expertise involved, but it was, I mean, at least it was there.”
“But I think we've made incredible progress at helping people understand post-COVID ME/CFS is there, is important, and needs to be part of the research. And that's evidenced by the fact that look at all these people on this paper. From academic institutions that I could have never have even imagined to have had the opportunity to work with. And these are all people that now, it's like, wow, this is ME/CFS. This is something. This is important."
“I'm really excited that this paper finally got published. I think it's evidence that we've been needing for a very long time. I'm also very excited by the RECOVER Initiative because we have not had a study of this scale ever, ever.”
“So, RECOVER has the opportunity, I think, to really provide that type of evidence base that has been really sought after by the pharmaceutical companies to get involved.”
