Non nobis solum nati sumus. Husband. Dad x3. Upstreamist. Pracademic. Storyteller. It’ll be ok in the end. If it’s not ok, then it ain’t the end. DPT PhD MPH.
Dear
@bmj_latest
,
Your latest Long Covid study suggesting signs and symptoms resolve in a year will be included in the syllabus of my research methods course as an example of how survivorship bias creates flawed conclusions and serves bad policy.
You're BMJ. You can do better.
Hmmm. I do not remember “many will fall by the wayside” in my infectious disease epidemiology and response classes, nor from my public health ethics class.
It’s almost like that statement doesn't have anything to do with the essential functions of public health at all. 🤷🏻♂️
For a person living with an invisible disability, trying to prove they have an invisible disability often makes the invisible disability worse for the person who’s living with it.
What a failure of our medical “system” that people go years with PEM/PESE and no one puts the pieces together for them. I can’t even conceive of the othering my patients have to live with daily but I’m reminded every time a patient cries when we simply discuss the science of PEM.
Apropos of absolutely nothing on this app, here’s your semi-regular reminder that if some exercise after a little rest *really* worked for (commonly) post infectious syndromes, everyone would be better by now.
It’s the first thing everyone tries.
(Signed, a physical therapist)
The study ignores the fact people living with Long Covid eventually just give up on the medical system, so their long term outcomes won't feasibly be tracked with medical records. It's clear the authors, reviewers, and editors haven't talked to people living with the disease.
Research in CBT is wild. I mean, if you spend 17 weeks telling someone how they’re feeling better and coaching them how to tell you how they’re feeling better, then when you ask them again whether they’re feeling better, you shouldn’t be surprised when they say yes. 🤷🏻♂️
Must be Fall, y’all. Most of my patients with
#MECFS
and
#LongCovid
are crashed. Solidarity with everyone who’s finding it harder than normal to function.
To anyone reading this who’s trying hard to endure and persist with an energy-robbing disease: I don’t know who needs to read this and I can’t know your struggle, but I want you to know I know you’re doing your best, you’re doing great all things considered, and I’m proud of you.
How can pacing be “doing nothing?”
Pacing involves such hard work! Planning. Preparing. Missing out. Isolation. Boredom.
Change your mind about this.
Pacing is work.
Pacing is “doing not-doing.”
Mitochondrial dysfunction still persisted after SARS-COV-2 was cleared, so viral persistence wasn’t the mechanism in this study. Instead, reduced ATP production was due to altered mitochondrial gene expression.
tl;dr: Viruses teach good beans bad tricks.
Pro tip:
Don’t be fooled.
Depression is wicked because it robs the *will* to do stuff.
PEM is wicked because it robs the *ability* to do stuff.
Are people with PEM often sad and anxious?
Yes.
Is PEM really depression?
No it is not.
It is not at all.
Like, not at all.
You know, the physical impairments involved with Long Covid gets more attention, but I can’t tell you how many executives, coders, and creatives I’ve treated for cognitive dysfunction and being physically unable to sit for long periods of time. Life and career changing stuff.
“Long COVID poses risk for Silicon Valley: ‘It’s very debilitating’” “It’s very debilitating. There’s no way I can physically or mentally work right now.”
Talked with *another patient* today living with Long Covid, who essentially was labeled a quitter after unsuccessfully trying to participate in a “recovery program” involving graded exercise.
Clinicians must recognize and respond to PEM/PESE so we can stop traumatizing patients.
I hate to break it to the presenters, but exercise has been formally tested in this population and it hurts a lot of people. Saying this kind of thing publicly isn’t challenging dogma the way they think. It’s showing you’re not up to speed enough to be anywhere near this topic.
The presenter then went on to present findings from research to suggest that resting/being bed-bound is actually more harmful for people with Long COVID and tried to draw similarity between symptoms of extended bed rest and Long COVID - HOW!!!!
A Covid-positive patient wandered into my clinic today, Dr. Bob, content to spread their “real joy” even though they were still actively sick. How on Earth am I supposed to “individually risk assess” other people’s ridiculousness?
Many folks have found real joy in living life as if Covid is behind us. Such people may be willing to accept some risk of infection in exchange for not thinking very much about Covid. Particularly if they're young and healthy, it's not an irrational stance. If they're... (8/25)
The Discourse™️
Me: oh look here’s a new study that says the muscles in people with Long Covid don’t look and function normally, particularly after physical exertion
Them: have you considered they’re anxious and out of shape because vibes ✨✨✨
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.
Another day, another opinion piece by this group of psychiatrists failing to explain how health-related anxiety causes decreased submaximal oxygen consumption and workload in the postexertional state in people who meet even loose clinical criteria for “CFS.”
(Hint: it does not.)
Pacing is totally antithetical to how most people live their lives and are induced by society to live their lives. Pacing doesn’t get the kids to school. Pacing isn’t intimate with a partner. Pacing doesn’t pay the bills. Pacing doesn’t lose weight. Respect patients’ sacrifices.
Look at me just living my life. Traveling. Socializing. Having fun. Often that involves masking in situations that are higher risk not just for COVID but a bunch of things you don’t want to catch. Protecting your community and yourself isn’t a zero-sum game. Get it together.
When an epidemiologist tells you that yes
#LongCovid
is bad, but people want to get back to normal and “there's more at play than just covid risk -- mental health, social well-being, community, ability to work enough/effectively, etc.”. . . Oh, like the things LC effects?
Ok, so I’m just a random simpleton on the internet, but I do not understand how someone could starve to death in a hospital without access to proper nutrition and technology, and the hospital and its staff who provide said nutrition and technology can have nothing to do with it.
The basis for reporting is not a study. It is an opinion piece. Please correct this detail,
@rachela_hall
. Your word choice provides the underlying work an unmerited level of legitimacy, which is ironic because the article relates to strength of evidence in clinical guidelines.
The good news is we don’t need belief when we have data. Here’s what data says:
👉🏻 PEM/PESE is an abnormal recovery response to exercise. It looks totally different than deconditioning.
👉🏻 PEM/PESE is associated with a pathophysiology that’s totally different from deconditioning.
I don’t know who needs to hear this, but public health has no “wayside.”
Instead, public health exists to eliminate the wayside, and to limit the number of people who fall within it.
Bertagnolli: “Some people have such severe fatigue, they can’t get out of bed..this weird tachycardia, where if they stand up, they pass right out..this brain fog. These are young people..need more understanding of the biology..is it staying in the body..our leading hypothesis.”
🚨New work refuting that Long Covid is FND from clinical and research perspectives by an international and multidisciplinary team.🚨
It’s part of a special issue of the Journal of Personalized Medicine on “New Challenges and Perspectives in Neurology and Autonomic Disorders.” 🤔
Thinking of Sammy and all who love her. She passed away recently from severe
#MECFS
and
#MCAS
.
Sometimes people ask why I’m in this area of research and practice where people are really sick, the progress is slow, and public awareness and funding are atrocious.
This is why.
No matter how much folks try to minimize global change, people with chronic complex medical conditions can not tolerate extremes of heat and cold.
Environmental justice is disability justice.
Another pro tip:
Don’t exercise people with signs, symptoms, and functional disability of PEM.
Just don’t do it.
They may want to.
You may want to.
Your referring provider may want them to.
That’s all ok.
Doesn’t matter.
Don’t do it.
Go back to the top.
Read it again.
Researchers: Stop using the 6 minute walk test in clinic trials for people with post-viral fatigue. Just stop. It doesn’t measure what you think it does.
Funders: Stop scoring grants with the 6 minute walk test as a primary outcome. You are wasting time and money on pure trash.
As it happens, none of this happens in people with post exertional malaise, such as from ME/CFS and Long Covid. In fact, the exact opposite of what’s described in this talk happens. There’s no beneficial feeling. There’s prolonged recovery time. There’s cognitive dysfunction.
I’m a small account
@EricTopol
but I just want to underline the importance of including post exertional malaise in any analysis of exercise in PASC. This latest article you reviewed didn’t and should’ve. We know too much about exertional intolerance to be able to claim ignorance.
I am still on this website waiting patiently for science journalists and grifter docs from prestige med schools to explain how an earlier onset of anaerobiosis at a lower work rate on the second of two maximal exercise tests spaced 24 hours apart constitutes a mental illness. 🙃
I'm so excited to speak to the UK Department of Heath and Social Care Research Working Group on
#MECFS
on post-exertional malaise next month, sharing current physiological insights and future directions on potential responsible uses of clinical exercise testing to find a cure. 🙌
This might be unpopular but here's a connection I think a lot of people still haven't made: PEM isn't deconditioning, but that doesn't mean that people with PEM can't have deconditioning, too. You just can't address the deconditioning in the normal way (i.e., exercise) with PEM.
We lost a person with ME today, someone most of us never met, but whose life ended far too soon. Her life and death reinforce a very important point. Living among us are people with chronic complex diseases that can’t be definitively diagnosed and treated with current technology.
The key to understanding PEM/PESE is to recognize the body no longer "plays by the rules" we thought we knew about how it should respond to exertion. Short and long term physiological responses to exertion are abnormal. We should not design treatments expecting they should be.
Physiotherapist checking in to say: no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no
been under a
#longcovid
clinic for 3 years or so now, nurse told me today at my appoitment that my symptoms are probably caused by deconditioning as I'm not improving >4 years and she's going to refer to a physiotherapist for me, to try and find a plan to "improve" my fitness.
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.
We commonly hear one component of the PEM/PESE experience is feeling “poisoned.“ Based on findings in CPET studies, they may spend so much time metabolizing glucose anaerobically that they may have excess lactic acid. So, this “poisoned” feeling may be “pickled” or “fermented.”
Nothing more awesome than sitting in a research meeting, reviewing physiological data from people living with PEM, and saying "this data doesn't make any sense" based on rules we thought we knew about how the body responds to loading.
Smells like discovery. Hopefully more soon.
Hey, clinicians and researchers in what we’ve come to call (commonly) infection-associated disease: while we’re messing around in the margins trying to fool ourselves that the tools we use like exercise are more helpful than they are, some of our patients are choosing euthanasia.
You know when we should stop using the term Long Covid? When the patients who made it and who live with it say it’s time to stop using it.
That’s when. 🤷🏻♂️
How many studies do we think it will take to know the prevalence of Long Covid is consistently about 7% and that it causes multi year morbidity? It sort of feels like a toddler testing object permanece by now. The sciency form of playing peekaboo.
Exercise duration by itself is not an appropriate functional outcome measure for
#pwme
and patients with
#LongCovid
. If we wouldn’t stress test a diabetic with a candy bar, we shouldn’t stress
#pwme
and patients with
#LongCovid
using bike and treadmill “exercise-for-time” tasks.
For an adult oncologist to make these public statements about how to handle Covid infections and reporting is wildly irresponsible, but in context of evidence from harms his advice perpetrates on *his own patients,* is also wildly eugenic.
So, where’s your line,
@UCSFMedicine
?
I no longer giving grace to people calling Long Covid a mysterious new disease with lots of symptoms to chase. It’s not. It’s got subgroups. The predominate one causing chronic disability is ME/CFS. PEM is a unifying construct. There’s the approach in a tweet. Go discover stuff.
I’m not sure what’s worse. People who show up on this infernal app to pick on disabled people because it makes them feel better about their small selves, or the cowards who liked and retweeted the bullying.
I don’t mean to be a total killjoy, but for recruiting 10,000+ people over the course of several years and support from numerous NIH grants, there is absolutely nothing new here—and this was totally predictable for what we already knew for many years about ME/CFS. 🤷🏻♂️
Like, this really ain’t hard. Get the ICC-ME out while you do a chart review and use it as a checklist. For many patients, it’s literally that simple. They’ve been gaslighted and dismissed so much by siloed professionals over *years* that the checklist fills itself out.
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.
Nice to wake up to news that some solid research into the pathophysiology of
#LongCovid
is now published. More to say later, as I am unpacking the study over a morning coffee, but for now congratulations to
@RobWust
and team on this difference-making work.
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.
I am so tired of putting in the work to apply for funding to do anything in ME and Long Covid. It is nearly futile.
So the work continues--part-time and for free. While we're at it, let's all keep wondering why the pace of innovation isn't nearly what it should be. Big mystery.
I don’t know who needs to hear this, but post exertional malaise/symptom exacerbation is not a stand-alone symptom. It is a *symptom behavior* that describes an association between symptoms/signs and exacerbating activities, which often includes many specific signs and symptoms.
I’d like to know when we will start accepting responsibility for *all* the patients under our care, even those with chronic sequelae that are confusing because they don’t conform to our neat little mental models of how we thought clinical practice should go.
If I hear another researcher claim the six-minute walk test is a valid test of cardiorespiratory function in people living with PEM, I am going to scream loudly enough that you are going to hear it no matter how far apart we live.
C'mon, NIH group. You're killing me.
During my sessions as a physical therapist working with people living with
#MECFS
and
#LongCovid
, we often talk a lot about grief and loss – of relationships, activities, identities. Yet, it’s the diseases that render people incapable of doing these things, not depression.
I’d say If you need to put into a guideline that medical teams should do the bare minimum to keep people alive, and without the guideline then providing basic supportive care is somehow debatable, then you’ve got much bigger problems with your humanity that a guideline won’t fix.
Fun fact for folks keeping track of their lactates at home: 8 mmol/L is a criterion for maximal exertion on a cardiopulmonary exercise test. Judging from some of your measurements, you’re already exerting at that level just getting out of bed to take your first test.
#TheAcidTest
One of the accepted case definitions for participants with ME/CFS in the Wallit et al study doesn’t require PEM.
Doesn’t require maybe the single most differentiating characteristic between ME and other fatigue-related health conditions.
In 2024.
Gah.
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
Does anyone know anything about the idea that PEM is found in found in rheumatoid arthritis and fibromyalgia? This sounds like nonsense to me but it's something that might get included as a scientific fact in an upcoming NHS educational module.
Any history of Long Covid is incomplete without a thorough discussion of ME/CFS. This erasure is part of the reason we’re simply repeating the history of ME/CFS with Long Covid, just with new people, faster, better funding, and at scale.
Two-day CPET is a biomarker (yes, I said it) that reliably differentiates ME/CFS from deconditioning, is sensitive to disease severity, and objectively characterizes function in a way that’s admissible evidence for SSDI and other disability adjudication processes.
Pass it on.
Just for the record, I *do not care* if ME/CFS is beyond the imagination of any specific researcher or clinician, because the data compels us to expand our notion of what’s possible and not the other way around.
We’re almost four years into this ongoing COVID-19 pandemic, so it’s past time that *all* researchers should be talking about post-exertional malaise as a key differentiating feature among participants. No more cred earned for using “exercise intolerance.”
Please and thank you.
Look. I’m a physio. I’m an exercise evangelist. Exercise is my education, training, hobby, and personality. I want people to exercise. *But* I don’t want people to exercise when it’s unhelpful. Just doesn’t seem helpful to lead with exercise in PEM/PESE and may make things worse.
Given the behavior of the landlord of this bird app, I don’t know who reads these tweets anymore. At one point, I sat at some intersection between physical therapist, medical, health equity, higher education, disability, ME/Long Covid Twitters.
This next tweet is for everyone:
Complex chronic disease following infection always has existed. “Long Flu” is myalgic encephalomyelitis. We need to use the name and commit to learn from the people with lived experience, as well as the scholars and advocates who came before “Long Stuff” entered the vernacular.
WUSTL: Al-Aly - “Before the pandemic, we tended to belittle most viral infections by regarding them as somewhat inconsequential…people are ending up with serious long-term health issues…we need to wake up…they are major drivers of chronic diseases”
The PEM/PESE Activity Questionnaire (PAQ) is one of the first tools developed to measure disability associated with PEM/PESE. It is now available for personal use. Please help us continue to validate it by participating in an ongoing IRB-approved study.
I totally hate what COVID infections and repeat COVID infections are doing to my clients with ME and Long Covid. It’s both dangerous and awful for them. Heartbreaking. 💔
It seems like everyone is sick. Gah. Why are we deciding to ignore this disease? 😑
“Long COVID is a type of illness we don’t know a lot about,” she says. “It can impact people’s quality of life. And the illness has impacted how Long COVID patients take care of themselves, so some have had a hard time adjusting to this new illness.”'
What Phil Parker fails to understand about people with infection associated chronic conditions is the sheer will and deep hope necessary to live with PEM/PENE doesn’t need “retraining.” It’s exceptional the way it is. And it’s unfathomable to someone who doesn’t live with it.
It's
#LongCOVIDAwarenessDay
, and APTA is excited to announce that we are working with
@HHSGov
Office of Long COVID to co-host an interdisciplinary meeting on Long COVID rehab this spring at APTA Centennial Center.
#LongCOVID
Imagine the sheer hubris of the NIH RECOVER group to ignore the patients with lived experience and the content experts in physical therapy and exercise science. It’s not unprecedented (see also: ME/CFS) but I still can never let myself get my head around it.
I get to present findings from the largest two-day cardiopulmonary exercise test study to date in people with
#LongCovid
this morning at
#CPTAConference
. Always a privilege to be able to address this topic area and provide some mechanistic insights to help demystify this 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.
We see basically the same abnormal post-exertional responses in ME/CFS in study after study after study after sample after sample after sample…and yet, so far we’re refusing to use this measurement paradigm as a main outcome measure in intervention studies.
Please talk about how many people who get sick don’t get better. Please talk about how the research-industrial complex has stood in the way of meaningful progress for years. And please talk directly to people who live with these (commonly) infection-associated chronic diseases.
I’m making a space for Lauren, who left us today—someone who was here among us, someone who loved and is loved, someone who matters, and yet someone whom health care providers and researchers failed deeply. Sending wishes for healing and strength to all who know and care for her.
We lost a person with ME today, someone most of us never met, but whose life ended far too soon. Her life and death reinforce a very important point. Living among us are people with chronic complex diseases that can’t be definitively diagnosed and treated with current technology.