What is Recovery Norway’s Role in the JAMA Network Open Study of Long Covid in Young People?

By David Tuller, DrPH
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As I wrote earlier this week, a new study of adolescents and young adults from Norway, published by JAMA Network Open, purports to show that “persistent symptoms in this age group are related to factors other than SARS-CoV-2 infection.” It didn’t actually show that, of course. What it showed is that if you use an expansive case definition that identifies everyone with any single unexplained symptom as having what the World Health Organization has called post-Covid-19 condition (PCC),  you will come up with pretty useless data—that is, if you want to understand anything about patients reporting actual disabling conditions.

I also pointed out something that seemed odd to me. As a current template for what they call post-infective fatigue syndrome, the authors were trying to resuscitate a zombie case definition for chronic fatigue syndrome—the abandoned 1994 Fukuda criteria. Since Fukuda has largely been dropped for research and clinical care and has been superseded by other criteria, the attempt to promote it without mentioning its acknowledged drawbacks and lack of present relevance is perplexing.

Not surprisingly, the study drew online criticism as soon as it was published. Beyond the fact that you could drive a tractor-trailer through the porous WHO criteria for PCC, it was noted that adolescents and young adults are less impacted overall from coronavirus infection and that extrapolating the findings to older populations would be unwarranted—even if the study were robust and well-designed, which it isn’t.

But it was also touted by some of those you’d expect to tout it. In his newsletter, Vinay Prasad, a hematologist-oncologist at the University of California, San Francisco, who has invoked the Third Reich in relation to US pandemic-related policies, called the findings a “bombshell” and “a damning revelation.” The study, he wrote, “takes a sledgehammer to the media narrative of the condition.” He added: “The reason people inaccurately covered long COVID is that they needed to have it— they needed it to be scary— to justify continued restrictions in young populations.” Prasad’s post is an amazingly wrong-headed interpretation of the findings.

Undisclosed in the paper was that it was developed in partnership with a group called Recovery Norway, which identifies its members as “people who have experienced recovery from ME/CFS or similar illnesses.” (I learned about this connection on twitter; here’s a particularly blunt riposte to Prasad’s assertions.) Recovery Norway has been closely associated with the Lightning Process—a three-day “mind-body” program founded by Phil Parker, a British osteopath and spiritual teacher who once boasted of how he could “step into other people’s bodies…to assist them in their healing with amazing results.”

Norway’s most prominent Lightning Process practitioner was one of the co-founders of Recovery Norway. Of the 126 individual testimonials of recovery presented on the site, 75 involve the Lightning Process. Overall, 93 of the narratives involve ME/CFS and eight involve “post-covid syndrome.”

The JAMA Network Open paper indicates that the research was funded by the Dam Foundation in Norway, which supports health research in Norway. The page for the project on the Dam Foundation’s site identifies Recovery Norway as the “user organization” for the project. An accompanying Q-and-A with Professor Vergard Wyller of the University of Oslo, the study’s senior author, included further information. According to Professor Wyller:

The project has been developed in collaboration with Recovery Norway, which organizes people who have experience of long-term symptoms after infections, including both kissing disease [glandular fever or mononucleosis] and COVID-19. Recovery Norway is also an applicant organization for Dam.” 

Professor Wyller also said this: “In addition, we regularly receive input from an international user group linked to the COFFI consortium.” 

As I have previously written, members of COFFI [Collaborative on Fatigue Following Infection] last year published a “research agenda for long Covid.” Like the JAMA Network Open paper, this article also sought to revive a zombie case definition for CFS—the 1991 Oxford criteria, which required only fatigue for a diagnosis. Like the 1994 definition, this 1991 version has been discredited—except among the likes of the COFFI crowd, apparently.

Here’s another interesting statement from Professor Wyller: “We want to find out whether SARS-CoV-2 differs from other infectious diseases when it comes to late effects after infection in young people.” If this was in fact a question of interest, why did they enroll as controls people who seemed to be suffering from viral infections just because they tested negative for coronavirus? Including such controls would obviously limit the possibility of determining whether the long-term effects of SARS-CoV-2 differed from the long-term impacts of other infectious diseases. The study is not designed to answer Professor Wyller’s question.

In any event, given Recovery Norway’s role in the study, the failure to mention the organization’s involvement, even in the paper’s acknowledgements, is surprising—especially since the information is highlighted on Dam’s site. What’s up with that?