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Feb 19 25 tweets 5 min read Read on X
I've been busy the last week or so, you know, actually working the fucking problem and so I was unable to immediately react when the same old clown car of 'experts' (i.e. clinicians on twitter who have not actually read or understood the literature on #LongCOVID) tagged this 1/ Image
and screenshotted my recent thread on #PEM and exercise. I tell you, these folks are nothing if not predictable, but it also goes to show their fundamental lack of understanding of the pathology at play. I mean, I can understand how a paper like this would excite a group of 2/
science deniers with poor research acumen. On the surface, it looks like a really solid paper showing that folks with #LongCOVID benefit from "physical and mental health rehabilitation". Let's dig deeper. The first funny thing about bringing #PEM into this argument is that 2/
THE AUTHORS OF THE STUDY DID NOT. Yep, that's right. One of the cardinal symptoms of #LongCOVID, that is known to be behaviorally and physiologically DISTINCT from fatigue. A symptom that every patient population and serious LC researcher has been publishing as THE symptom 3/
to ask about before any exercise or rehab interventions are attempted and these authors didn't ask about it. Didn't. Ask. So, first things first: to anyone taking what I said about PEM and applying it to this article? That's kind of like taking a statement of mine like "don't 4/
run on a freshly broken leg" and tagging me in a paper saying "running benefits health in some people"...err...did the authors of the paper ask about a broken leg before making people run? orrr...I mean, wow. If some these people are handling your clinical care with this level 5/
of attention to detail and pure logic my advice would be to get out while you can. Next point before we event get anywhere deep and meaningful: the full adherence rate of this clinical trial was less than 50%. Yet they refer to the adherence of their study as "good". Wow. Side 6/
note: my whole job for the last decade has been to run clinical trials, including being a PI on some of the largest multi-site rehab trials in stroke out there right now. If FULL adherence to a protocol (in this case defined as showing up to at least 2/3 of the sessions) dips 7/
below 80% in our trials we start to wonder what is going on and whether or not the intervention has any mainstream feasibility in the population we have selected because if you can't get more than 80% of people in a clinical trial to stick to a protocol that they're likely 8/
receiving money to follow and you have a clinical team being paid to keep them on target, then it is kind of futile to think that in a real-life clinical setting your intervention will be tolerated. So, at 80% we're concerned, at 70% we're downright worried. This team hit 9/
47% and called it "good". I mean...editors @bmj_latest - you all on sabbatical? You ok with calling 47% adherence "good" and publishing it? Ok. So, where were we? Didn't screen for a cardinal symptom of the disease state they're supposedly studying, couldn't get a majority of 10/
study participants to follow the interventional protocol (😬), anything else? Oh yeah: only recruited people who were hospitalized with acute #COVID into their #LongCOVID cohort. Now, while I freely acknowledge that this cohort of #pwLC deserve research just like everyone 11/
else who has been damage/continues to be damaged by this awful virus. However, lets be real: if you were hospitalized with acute COVID and diagnosed with #LongCovid, you should be studied distinctly from #pwLC who were not hospitalized with acute infection because there are 12/
likely elements of your pathology that differ from those who were not hospitalized. #pwLC who were hospitalized with their acute illness make up less than 10% of all folks in the world with #LongCOVID. As such, good authors studying this cohort would make a point to limit the 13/
findings of their study, right? Seems like the ethical thing to do, right? Their conclusion:
"In adults with post-covid-19 condition, an online, home based, supervised, group physical and mental health rehabilitation programme was clinically effective...."
Once again, I ask: 14/
@bmj_latest editors - you asleep at the wheel letting a conclusion like this through? What exactly is going on that you allow a research finding in such a narrow subset of a disease population to be generalized to the entire #LongCOVID population in the conclusions with no 15/
pushback? Bad science, worse editorial management. Ok. Now, my final point because I don't even want to give this sort of nonsense too much oxygen or attention (see my earlier comments re: actually working the fucking problem): if you've been following me since the beginning 16/
of this awful pandemic you will know that I'm a rehab guy. I have stated, from the beginning, that with careful rehabilitation that takes PEM into account, #LongCOVID patients can experience benefit. The question is how much benefit? Look at the effect sizes in this paper. 17/
#pwLC deserve research into interventions that are going to seriously move the needle on what is possible for them. They do not need another tired paper that, if it were honest, would say: "in a cohort of pwLC that represents less than 10% of the total #LongCOVID community, 18/
our intervention featuring nothing new that was tolerated by less than 50% of patients seemed to maybe reduce fatigue by 20% or less". When it is carefully and thoughtfully applied by experts, rehab can help #pwLC recover some function. My stance on this has not changed, but 19/
rather than continuing to produce this crap can we please ask some worthy questions? I mean, our team's research strategy largely doesn't include research any more (we're chasing antivirals, immunotherapies and other medications), but even if you want to stay in the rehab 20/
space there are a million worthy questions: What drugs or non-drug interventions (like hyperbaric oxygen therapy) can we pair with rehab to increase its efficacy? When should specific POTS drugs be used based on clinical presentations? Can structured use of high-dose 21/
antioxidants or other mitochondrial therapies post-exertion stave off PEM and improve rehab outcomes? There are a million worthy rehab questions out there to be asked about the nature and quality of effective rehab for #LongCOVID and other disease states such as #MECFS and 22/
chronic #Lyme where PEM is at play. So when I see these so-called "experts" in the biopsychosocial world crowing over the publication of work like this, it really just indicates to me how regressive, unscientific and non-serious these folks are. Keep that in mind before 23/
screenshotting my shit and thinking you have a good point: your complacency is a bug not a feature. end/

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More from @PutrinoLab

Jan 27
I’ve been quiet on this platform this week as I had the privilege and singular honor to be invited to a very remote location in Kenya, working with the Maasai people to better understand their physiology. Why am I telling you this?
1. Because it is objectively awesome
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But 2. Because there has been a lot of discourse regarding post-acute infection syndromes such as #LongCovid, #MECFS, and chronic #lyme, the presence of PEM and the relationship to exercise. Every time I bring up the dangers of exercise and exertion when PEM is present, a 2/
clown car of bros, fitness fanatics and “experts” on exercise tell me that I just don’t understand exercise the way they understand exercise. Because these takes are getting old, I wanted to do something I rarely do and share some of my pre-COVID research. Prior to 2020, a big 3/
Read 19 tweets
Jan 16
You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/
obituary for Beth Mazur and I just need to ask: how many more? How many more stories do you need of vibrant, exceptional people being cut down in their prime by these illnesses to finally act? How can you read what @meghanor and @danaparish articulate about chronic #lyme and 2/
all they have done with their lives before and since, yet continue to perpetuate a myth that this illness is made up? How can you read @julierehnyer’s account of fighting for her life her sheer will to live a full life and come to the conclusion that pw #MECFS are simply 3/
Read 12 tweets
Jan 8
Ok. One last time: #LongCOVID, #PEM and exercise. Let's talk and I'll try to be REAL clear and REAL simple. If someone has PEM, exercise is contraindicated. Not only do you not prescribe/suggest exercise, you recommend avoiding exercise. That's it. Simple. No gray area.

Why? 1/
Folks with PEM have experienced changes to their physiology. Changes that result in damage when they exert themselves. @RobWust's excellent new paper digs into some of these changes in detail, but the bottom line is: if you have PEM, exertion causes damage. No gray area. 2/
To be clear: in non-disabled bodies that don't have PEM, exercise has many, well-documented benefits. We also know that there are many health conditions that exercise can help to prevent: heart disease, stroke, lung disease, diabetes, metabolic syndromes, etc. No gray area. 3/
Read 11 tweets
Dec 28, 2023
I don't like any confusion or lack of transparency about our thoughts/approaches regarding our research strategy surrounding #LongCOVID, chronic #Lyme, #MECFS, vaccine injury and other complex chronic illnesses that we study, so I wanted to post an end of year thread to share 1/
where we are right at this moment. This thread is by no means our "end game" in terms of strategy, just where we are at right now and how we're thinking about things. This may certainly change as we learn more and, as always, viewpoints other than ours are valid. So, with that 2/
let's begin. We're interested in studying conditions that can be framed as post-acute infection (#LongCOVID, chronic #Lyme, #MECFS triggered by infection) OR exposure (vax injury, ME/CFS triggered by mold exposure, trauma, etc) syndromes. When an infection or exposure event 3/
Read 25 tweets
Dec 24, 2023
@Silas33 @ThisisMEtweety @cstroeckw Hi Stephen, I still run my own social media despite being privileged to work with Dr Proal. What I meant in this comment the Christoph is that in folks with LC (and now in vaccine injury as we have been studying pw vaccine injury with Dr Iwasaki) is we see immune profiles 1/
@Silas33 @ThisisMEtweety @cstroeckw where someone has IGG or IGM responses for many different pathogens, ranging from tick- and vector borne bacteria, to viruses like EBV and CMV. There are (IMO) two possibilities to explain these results: T cell exhaustion (as we described in our nature paper this year) leads 2/
@Silas33 @ThisisMEtweety @cstroeckw to reactivation of many different pathogens, or pathological immune hyperactivity, triggered by an infection (or ‘exposure’ in the case of vaccine injury) that will not settle down and leads to an immune system that produces damaging autoantibodies and IGG for “everything”. In 3/
Read 10 tweets
Nov 13, 2023
Ok. Yesterday I put together a thread about #LongCOVID and the intersection of other diagnoses such as #MECFS. For many of the people reading, this was the tweet that caused a lot of pushback so I wanted to take a moment to clarify. Let me start by apologizing for any distress 1/
caused. I know that this is a complex and charged topic and choosing the correct words in order to not add confusion to the mix is so important, so I take responsibility for not being more clear yesterday. I would also like to share that this is me sharing the philosophy of 2/
our clinic that is opening soon and I am doing so openly and transparently so that we can have discussions about these topics that matter SO MUCH. Nothing is set in stone, so if you have a counter opinion bring it to me and let me consider it. It is important that we get this 3/
Read 20 tweets

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