Thread by @sunsopeningband

Hi @ManvBrain. Thanks for an interesting article in @NYMag. What a great premise; to suggest #LongCovid is a condition that rhymes with #MECFS. We totally agree on that. Not everyone with #LongCovid has #MECFS of course, but enough do that the analogy has some intellectual merit.

My name is Todd. I've been involved in #MECFS research and clinical practice for about the past 15 years. Since the start of the pandemic, I've been working to build on efforts of patient-experts to warn folks about the potential and eventuality of post-viral fatigue syndromes.

As you're getting what we'd call post-publication review on the article, and there's no good football games on to watch this evening, I thought I'd connect here to provide a few thoughts. I'm definitely open to discussing these thoughts offline. My DMs, as the kids say, are open.

To answer the question in the title, I'd say 'sure.' Disabling fatigue of post-viral origin has long been the most common illness people have never heard of. Up to 4 million people in the U.S. had #MECFS prior to the COVID and 90% estimated not yet diagnosed. So maybe 40 million.

In any any event, as you rightly point out, the early efforts of patients and scientists, many of whom with #MECFS and acting at great cost to their own wellbeing and functioning, saw the potential need to more research and treatments for the coming pandemic of chronic illness.

Then, as you also rightly point out, the early work of patients and scientists, many of whom living with #LongCovid, working against the clinical and scientific communities, made their own label and also have done much of the formative scholarly work on their *own disease.*

These observations lead to my first takeaway from the article. Patients living with #MECFS and #LongCovid aren't 'militant' as the quote suggests or 'sore losers' because they science didn't go their way; they are the closest thing we have to bonafide experts on these conditions.

Researchers and clinicians like me learn every day from patients living with these conditions. So far, we take ideas, test them, and disseminate the ones that seem to work, but the patients are always ahead of us. We dismiss them or fail to listen to our collective disadvantage.

This observation leads to my second takeaway from the article. Patients have long told us that graded exercise and cognitive behavior therapy don't work well or they cause symptoms to be worse. In the article, you interviewed proponents of these treatments but not the other side.

If you had interviewed folks who work on exercise research paradigms, the article look different. For example, maybe the article would have discussed studies indicating there are problems with metabolic, immune, and neurological functioning that are *worsened with activity.*

And it would be this data that makes cognitive behavior therapy look like a band-aid and graded exercise therapy look harmful. If I had covered up the dateline, I'd have thought this article was published 10 years ago and certainly prior to 2015. We've learned a lot since then.

We learned the shiniest evidence for CBT and exercise wasn't worth the paper it was printed on. By the time the article was published, subjects who worsened could be classified as improved. These were the scientists you chose to quote in the article and defend on social media.

In fact, you'd be hard-pressed to find a clinical guideline in #MECFS and #LongCovid anymore that recommend CBT and graded exercise as a first intervention, because we now know the evidence you have decided is so solid turned out to be more like the emperor's new clothes.

As a physical therapist, I would love to prescribe exercise for #MECFS and #LongCovid! It would totally align with my professional training and also my worldview as a person and as a clinician. But I don't, at least at first, because it makes people worse.

First, do no harm.

The syllogistic fallacy 'if exercise helps tired people then exercise must help #LongCovid and #MECFS' isn't new. And neither is the article's premise that #MECFS and #LongCovid must be psychogenic, despite not one shred of scientific evidence establishing actual causation.

The article ends with an odd - and oddly strong - bias toward this unproven default psychogenic etiology for #MECFS and #LongCovid. I guess I'll never understand how we can start from the idea of something other than psychiatric disorder causing other conditions -- but not these.

Anyway, as I mentioned, I’m happy for a chat. Or not. Either way. We need to educate the public about #MECFS and #LongCovid, because our governments have decided it’s not worthwhile. The fourth estate is all we have. So we need to make sure we get this right. I’d be glad to help.