E. Coli is endemic, i.e. never going way. Given this, under what conditions will you advocate ever stopping washing your hands after using the restroom or coming into contact with contaminated material? Sexually transmitted infections are endemic, i.e. never going away. Given this, under what conditions will you advocate ever stopping the use of evidence based mitigation methods like condoms, vaccination, behavioral counseling, and prophylaxis?

@SteveFifield3 @KatyBruce108 @CaroleBruce17 @MEResearchUK @Invest_in_ME @OpenMedF @polybioRF @VirusesImmunity @mecfsbiobank @PhysiosForME @resiapretorius @dbkell @OxMEDiscovery @BhupeshPrusty I’d love to talk about how lack of funding and venues to share peer reviewed work have silenced ME research and researchers over time, and has limited progress. That’s influenced my whole career. It seems to be the censorship everyone’s complaining about, hiding in plain sight. @SteveFifield3 @KatyBruce108 @CaroleBruce17 @MEResearchUK @Invest_in_ME @OpenMedF @polybioRF @VirusesImmunity @mecfsbiobank @PhysiosForME @resiapretorius @dbkell @OxMEDiscovery @BhupeshPrusty It would be fantastic to talk about the reviewer comments I *still* get that dismiss infection associated chronic diseases as psychological, and now neurological, despite the physiological data we’ve cultivated *over many years* and *replicated by others* showing those are false.

I'm struggling with how cognitive dysfunction came to be considered part of deconditioning. We published data suggesting it isn't...11 years ago. If a patient or potential research participant reports cognitive dysfunction, they more likely have PEM/PENE. pubmed.ncbi.nlm.nih.gov/21208154/ We also published on this dataset indicating self-reported cognitive dysfunction was a robust symptom to differentiate between women with ME/CFS and matched sedentary women who are deconditioned. pubmed.ncbi.nlm.nih.gov/36938769/

For those of you who are thinking I don't understand the @theNASEM Long Covid definition, here's my thought. All of the things in the circle that aren't crossed out (and more!) can be PEM/PENE. It all depends on the timing with activity.

That's it. That's the tweet. Does that make other manifestations of Long Covid less valuable or worthy? Nope. But thinking about it as its own thing or an 'associated' condition is not helpful if half-ish or more of people with Long Covid identify that they have it.

Even having your hair washed by someone else involves at least 30% over baseline. For someone with severe #MECFS, characterized by correspondingly severe impairments in energy production and utilization, this kind of thing decidedly isn’t going to make them feel better.

https://twitter.com/ishbelfrazer/status/1816837819257479641

Source: pacompendium.com/self-care/

Eating requires a 50-100% increase in metabolic output over baseline. This doesn't cover meal prep, socializing, digestion nor effects of PEM/PENE. Saying that swallowing and digestion impairments in ME are 'functional' fundamentally (willfully?) misunderstands the problem. Source: pacompendium.com/self-care/

If your theory of PEM/PENE doesn’t prominently feature bioenergetic impairment in cells composing all the body’s tissues/systems, then it doesn’t address the proximate cause of signs, symptoms, and disability associated with PEM/PENE in ME and “ME subtypes” of other conditions.

https://twitter.com/bhanlon15/status/1791912684889272464

Do what you want with modifying immune system functioning or killing virus. Maybe you can temporarily lower the burden on a fundamentally de-energized immune system and inconsistently observe changes in PEM/PENE in some people. We’ve seen it in some phase II/III testing in ME.

A lot of smart people don’t get this nuance quite right, as this cardiologist demonstrates here, and this misunderstanding—while it seems quibbling—has deep implications for how we think about treating people living with post-exertional malaise, including people with Long Covid.

https://twitter.com/bhanlon15/status/1788183969747370192

Exercise intolerance is a limited ability for physical activity. It's a broad definition. There are many reasons why someone may have exercise intolerance. We see it in people who have heart, lung, circulatory, and metabolic diseases. We even see it in otherwise healthy people.

I spoke with members of the NIH RECOVER oversight committee in a meeting that was going to include the RECOVER-ENERGIZE PI before it didn't. My input was to include pacing in an adaptive design to ensure participants could move in and out of exercise groups if they crashed. Instead, what we got was the UK PACE trial without the CBT arm. In other words, repeating the same mistakes at scale that we've already made with ME/CFS. Pacing is a core competency of attempting to live with PEM, not a separate intervention to be compared to others.

Exercising in Long Covid is the source of a lot of discussion on here because we know about a subset people with the disease for whom exercise may be harmful. I have been looking this figure for the past 3 days. There are some issues I'd like to point out. sportsmedicine-open.springeropen.com/articles/10.11…
First, the presence of PEM is a(n absolute or relative) contraindication to physical exercise (depending on many factors). So, the top two boxes of the chart don't make sense together because ruling out contraindications to physical exercise would necessitate ruling out PEM.

This tweet forms the basis for a whole clinical masterclass in "the energy system is broken and all the pacing in the world probably won't fix it enough to respond normally, so stop acting like this is a realistic expectation."

https://twitter.com/healingfromlc/status/1783099878417080570

A clinician asking a patient living with PEM to pace on one hand and exercise with the other is usually the living embodiment of the expression "robbing Peter to pay Paul." Worse, we are asking the patient to do less of what they want/need to do in service of an exercise program.

@eskabadu Thanks for this interesting question and set of observations. I appreciate you sharing them, as I also appreciate the chance to share. In the first part of the thread, you asked whether I think CPET measures PEM or the energy deficit associated with it. I think it is the latter. @eskabadu My expertise involves two-day CPETs. In this methodology, a first CPET is used as a physical stressor (more on stressors in a minute) to *induce* PEM. A second CPET 24 hours after the first one is then used to measure the physiology of the post-exertional state.

Look, I’m always perfectly happy to accept interventions like talk therapy and brain retraining might be effective for any range of conditions. My only requirement is for sufficient data supporting the claim. Anecdotes, positive though they may be, need not apply. I’ll never take away a person’s narrative about what they believe worked for them. In fact, more power to them. But I will always dispute that an individual’s personal narrative should generalize to others in the absence of adequate evidence suggesting that should be the case.

Here are some things PEM reliably is that post-exertional fatigue in other conditions reliably is not:
* delayed
* prolonged recovery time
* response to multiple types of exertion, not just physical
* meaningfully impairs function
* involves unusual symptoms that aren’t fatigue

https://twitter.com/SockFoam/status/1764993496002314486

If the module is talking about “scientific facts,” I hope some of the studies comparing and contrasting post-exertional signs and symptoms with deconditioning is getting included. That work is just a short Pubmed search away and it adds some important context to this discussion.

Well, since everyone's choosing their little part of the NIH Intramural Study to focus on, let's have a little "phun with physiology." Here's an interesting little factoid related to moderate physical activity as measured by actigraphy.

Dang. So much disuse!

Or is it? I mean after all moderate activity is moderate activity, it isn't a big deal, and maybe people with PI-ME/CFS couldn't do it because they haven't done it. With their effort preference toward low value activities, maybe they didn't want to anyway.

Right? Not so fast, my friends.

Declines in submaximal CPET measures corresponding with PEM symptoms and signs on the second day of a two day CPET have nothing to do with effort preference in people meeting accepted physiological criteria for maximal exertion. You can’t choose or fake your anaerobic threshold. Of course, you need to do a two-day CPET to see these trends, one CPET isn’t the right thing to do, this is not just my “idea” because there are systematic review/meta-analyses of two-day CPET data now, and it’s *checks calendar* 2024 and I can’t believe I still have to say this.

nature.com/articles/s4146…
The conclusion of "alteration of effort preference" driving PEM from an underpowered study that blatantly misuses CPET in the face of all relevant research and clinical guidance for ME/CFS is what we get after years of developing the protocol and waiting for these results?

✌🏻The jury is still out✌🏻 seems like a deeply unserious response to a deeply serious issue when there’s more than enough evidence already for a jury to have decided and gone home to rest easy with their choice.

It’s all here. No wonder the good prof still has me blocked. 🤷🏻‍♂️ Graded exercise has been studied for years in POTS, and the people who treat it with exercise rely on a largely flimsy literature to suggesting efficacy, including in this case, direct evidence from *checks reference section again* an unpublished abstract for people with PASC.

Hi, @ChrisCuomo. I know you’re committed to getting this right and
@mjsportspt is a friend. But as a physio working with (commonly) infection associated complex chronic disease, I hope you’ll take this video down. It’s riddled with inaccuracies and may wind up hurting people. I’ve watched this video three times already and it’s making my head hurt.

LinkedIn saw it first, but I’m proud to announce that, as of yesterday, I’ve finished a PhD (Publication) at @portsmouthuni @UoPSportScience. It was a winding and unorthodox route to develop content expertise and demonstrate the relevant scholarly skills, but worth every second. The title of my thesis is “From Function to Physiology and Back in Adults with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” It consolidated findings from 11 publications over the last decade of work in this area to tell the story of post-exertional symptoms and signs.

Dr. Putrino is outstanding in so many ways, but even regular people with a standard commitment to solid science and humane clinical practice quickly find themselves in the position of remediating deep and long-standing injustices in infection-associated chronic complex diseases.

https://twitter.com/PutrinoLab/status/1747246020893843817

It doesn't have to be a motivation to enter and stay in the field, but once you're here, it's hard to miss. Some folks just want to do the science and practice and avoid the rest of it, but that's not how it works. Just a presence as a scholar and clinician makes you an advocate.