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.
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I’ve now been able to read the new iCPET paper a few times (I’m slow). As you know, I do love a CPET paper. My first thought is: good that a second group is using this methodology for replication purposes. Adds credibility to the findings if more than one group are finding them.
My second thought is: they didn’t seem to have any requirement for max tests. They mentioned respiratory quotient for their healthy controls, but not for their patients. Why is this important? The potential to compare apples with oranges: results of maximal and submaximal tests.
How do I know? The 25th percentile for RQ was below 1.15. This suggests a lot of variability around the median and potentially values below the generally accepted cut offs for achieving a maximal test. True that they observed the same spread in their healthy controls, but with a
We still know precious little about PEM, but one thing's for certain--it represents an impaired recovery response to exertion. How do we know this? We had data from systems to molecules, replicated across myalgic encephalomyelitis cohorts originating regardless of patho-etiology.
Who cares? Because a foundational aspect of being human is being able to count on physiological adaptations to exerting ourselves. Walk a little more so you can walk a little more. Read a little more so you can read a little more. Do some more to do more later. It's fundamental.
One way to think about this that has been described is the 'energy envelope.' (The terminology imprecision makes me a little crazy as a physio and exercise scientist, but it's popular and we'll go with it.) The energy envelope is the total amount of energy available to do things.
Maybe it’s just another day ending in “y” around here but I’ll volunteer we can never do enough to educate health care practitioners about PEM—the thing that breaks all the rules. We simply can never have enough caution and clarity surrounding PEM, particularly how to do no harm.
In trying to understand this confusing phenomenon, I’ve spent more times wrong than right. After all, as a researcher all your best ideas are still just hypotheses and as a clinician the best you’ll ever do is still considered practicing. The greater pursuit isn’t to be right…
it’s to *get it right.* Sometimes that critique is pointed and direct. There’s a lot of painful experiences and trauma out there. As someone studying a phenomenon I don’t live with, the best I can do is be a knowledgeable and empathetic interloper. But an interloper nevertheless.
The sooner we can move away from this still-pervasive idea that PEM is a feature of multiple conditions, the better. We’re still not seeing the forest for the trees. It’s hurting our ability to subgroup patients with different kinds of triggers that share common pathophysiology.
Here’s some data from a recent study we did with patients reporting PEM/PENE. Notice the overlap between Lyme, SARS-COV-2, Gulf War Illness and other conditions. Not all people with them have PEM/PENE and meet criteria for ME, but the ones who do…have ME. journals.sagepub.com/doi/10.3233/WO…
(Rolled up on the “Other” are enteroviruses, which I somehow forgot to put on the demographic form. Gah. 😩)
@twoShaws Some interesting notes while waiting for a flight: 🧵
The exercise cohort was not pre-screened for PEM because they did not fill out the DSQ-PEM. It's no secret that I'm not a huge fan of how investigators use this questionnaire, but they did not use the most common survey.
@twoShaws Instead, they used a visual analog scale survey and focused on a symptom cluster they found to be prevalent after CPET in a prior study. Maybe this is fine but using a different survey tool may compare apples with oranges. Seems odd to not screen for PEM using a common approach.
@twoShaws Seems even odder they wouldn't use the DSQ-PEM in people with suspected PEM because *mounts soap box and loudly inhales* IT IS IN SET OF COMMON DATA ELEMENTS CREATED BY A *checks notes and loudly inhales again* AN NIH WORKING GROUP. SO WHY WOULDN'T THEY USE THEIR OWN GUIDELINES?
I totally acknowledge the role of poor mental health in people with ME and ME-like/ME-subtypes of conditions. But to say there’s a reciprocal relationship between mental and physical health, and to leave it there, only tells part of the story and leaves out the *important* part.
Let me explain. If you stop at saying there’s a bidirectional relationship between mental and physical health, you might be tempted to assume, as a clinician, that you can intervene on both ends and those interventions should have exactly the same effect. After all, why bother…
…with figuring out what comes first—chickens and eggs—when you can have omelets *and* chicken tenders. That logic is so tempting. But here’s the fatal flaw. If someone is depressed, I’m going to encourage them to engage in pleasurable activities. Like going to take a nice walk.