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Turns out I was featured in this very dumb article about long covid. And the guy lives in my small town and didn’t even reach out to ask for my perspective! Just sent him this email. <a target="_blank" href="https://twitter.com/AlanLevinovitz/status/2061503084438712346" color="blue">x.com/AlanLevinovitz…</a>
Your name was redacted in the email I received, by the researcher, because it’s unethical to share the name. I didn’t choose not to reach out to you — I didn’t find out it was you until just now, when you emailed me.
What was the HIIT protocol? HIIT is such a broad category in exercise science unfortunately. If it was a threshold or CV or similarly aerobic based interval session it could have been appropriate.
I don't see the research protocol online anymore. But any sort of exercise protocol would have required screening for those who suffer from post exertional malaise and communication of potential risk— neither of which were included.
Megan, you really don't know what you are talking about. First of all, they DID disclose serious risks like risk of death from exercise, as all cardiopulmonary trials do. These are people who do rehab with severe heart failure patients and cancer chemo patients. I'm not sure you even had access to approved protocols or consent forms — as I recall, they told me all you could see was their trial registration — but if you did, you would know that, and if you didn't, then here we are. As for screening people for PEM: as I lay out, at length in the article, there is no good way to "screen" for PEM. Self-report doesn't align well with what happens in clinical trials, so if you screen people using self-report, your trial will build in exactly the kind of problems with patient population that I describe. You can't screen people using self-report, and then tell them about the risks associated with what they are self-reporting, when neither the self-report nor the risks are established as reliable in the first place! I don't know what else to tell you. You have accused me, both online and by email, of being misinformed and not in my area of expertise. This reply and your correspondence with me indicates the reverse.
There is a big difference between boilerplate warnings and a specific “some long COVID patients may experience dramatic long-term worsening of symptoms.” Also, if my critiques were wrong, why did they cancel the study? It's not like I have any direct power here.
You never had access to the consent form! You don't even know what they said in it. And if you're disclosing to patients that a therapy has serious risks...why do you need an extra disclosure, unless there's a very well-established risk to that patient population from the intervention you're doing? They canceled the study for the reasons I laid out in the piece. They had heard they were going to get harassed, they and their departmenet were uninterested in dealing with harassment and bad publicity, so instead of experts studying an understudied condition, you succeeded in driving them back to their regular beat of cardiopulmonary care for heart failure and cancer patients, where that kind of thing doesn't happen.
An alternative interpretation is that they honestly were not aware of the risks and pulled it because they have ethics. Or because they anticipated that IRB approval would be revoked.
no, what happened is you drove extremely talented researchers — who know much, much more about cardiopulmonary rehab and risks than you do, and treat extremely at-risk patients — away from an underresearched condition it sucks, and it harms scientific progress, in the same way that the RECOVER trial putting people with self-report of PEM into a non-exercise arm of the trial was bad