David TullerThe “Wired” Account of Cancelled Exercise Study for Long Covid at University of Virginia
By David Tuller, DrPH On June 1st, Wired published a 7,600-word lollapalooza about mind-body interventions for Long Covid. The article, written by Alan Levinovitz, a professor of religion at James Madison University, posited that angry patients were derailing important research into these and other psychological and behavioral treatments. For balance, Levinovitz quoted multiple critics of these approaches (including me), but at key moments he stacked the deck in favor of his own interpretations. One example, which I mentioned in an earlier post, involved the discussion of the PACE trial and related research. Levinovitz ignored clear evidence of serious methodological flaws and presented these disputes as matters of “they said, they said.” In another example, he offered what appeared to be a slam-dunk case of a patient suppressing valuable research, in the process portraying an unnamed University of Virginia law professor as an unreasonable anti-science advocate. But he omitted a key detail regarding the study the professor was protesting, rendering their protests hard to comprehend. Moreover, he did not offer the professor a chance to explain their perspective, and then failed to shield their identity from the public. Here’s the relevant section of the article: “If overcoming opposition feels too burdensome or controversial, researchers may simply abandon a trial. Siddhartha Angadi is an exercise physiologist at the University of Virginia who specializes in rehabilitation. He designed a long Covid exercise trial with a cardiologist and a pulmonologist, both of whom had experience treating patients with severe heart failure. (In rehabilitation medicine, ‘exercise’ means physical activity in service of rehabilitation, so standing up from a chair could qualify.) The IRB approved it. But then a UVA law professor and long Covid patient emailed him and the IRB with ‘grave concerns’ about the trial. There was ‘no way this would be approved if the …
Tom KindlonUK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT
https://www.actionforme.org.uk/prime-workshop-on-post-exertional-malaise/
https://www.actionforme.org.uk/wp-content/uploads/2026/06/PRIME-Webinar-3-Programme-PEM.pdf
Screenshot from Science for ME @s4me weekly update
I like many other people thought this blog post was very good
"Why I Can’t Just Meet You for Dinner"
https://substack.com/home/post/p-178293036
Screenshot from AMMES May 2026 Newsletter
#MEcfs @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #PEM #PostExertionalMalaise
#PwME #ME #MyalgicE
@mecfs
Dr. Karin Kelle-Herfurth„Normal findings at rest do not signify normal function; they merely indicate that the system has not yet been sufficiently challenged.”
Paul Watton & Bhupesh Prusty: Reframing #MECFS: toward a unified mechanistic model of chronic post-infectious diseases
#MEAwarenessHour
#PostExertionalMalaise
Reframing ME/CFS: toward a uni...
Reframing ME/CFS: toward a uni...
Reframing ME/CFS: toward a unified mechanistic model of chronic post-infectious diseases - Journal of Translational Medicine
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe multisystem illness marked by post-exertional malaise (PEM), cognitive dysfunction, autonomic disturbance, and impaired physiological resilience. Historically, the absence of validated biomarkers, heterogeneous definitions, and limited investigative capacity have complicated mechanistic interpretation and contributed to the use of psychosocial and rehabilitative frameworks in clinical practice and in parts of the literature. Main body Advances in systems biology, accelerated by Long-COVID research, have transformed our understanding of post-infectious syndromes, implicating persistent immune dysregulation, mitochondrial and metabolic reprogramming, endothelial and microvascular dysfunction, abnormal coagulation, lipid-mediated signalling, extracellular vesicle communication, and viral protein-associated immune activation. This review charts the shift from early post-infectious observations through psychosocial dominance to contemporary biological frameworks, emphasising that pathology is state-dependent and revealed under physiological stress. Conclusion ME/CFS is thus reframed here as a disorder of impaired adaptive capacity within post-infectious disease biology.
Home Page: Inspirations of Love and HopeLooking Back: 30 Years of Shame and Finally Understanding My Experience
I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.
Doctors kept telling me it was all in my head.
They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.
Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.
Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.
So I started doubting myself.
I felt weak.
I felt crazy.
I carried a lot of shame for something I couldn’t control.
The fatigue and exhaustion that comes with this illness is crushing.
It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.
My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:
The problem isn’t simply how much I sleep.
It’s that my dysautonomia prevents the sleep from being restorative.
In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.
Only recently have I finally understood what’s really happening.
What I have is dysautonomia.
My autonomic nervous system doesn’t regulate properly anymore.
That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.
ME/CFS always felt like an incomplete label to me.
Yes, I crash after exertion.
Yes, sleep doesn’t fix it.
Yes, my body has never functioned the way people expect it to.
But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.
The only thing that actually helps is pacing — staying within my energy envelope.
I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.
After 30 years, I’ve finally stopped blaming myself.
That alone has been healing.
I’m sharing this journal entry in case it gives someone else a little more language for their own experience.
And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.
Our energy is extremely limited.
We have to be very careful to avoid crashes.
Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.
Sometimes understanding does not cure the body.
But it can begin to release the shame.
And after so many years of being misunderstood, that matters.
#30YearsOfIllness #AnxietyAndChronicIllness #AutonomicDysfunction #AutonomicNervousSystem #brainFog #chronicFatigue #chronicFatigueSyndrome #chronicIllness #ChronicIllnessAndShame #ChronicIllnessAwareness #ChronicIllnessBlogger #chronicIllnessJourney #chronicIllnessSupport #ChronicIllnessValidation #CrashPrevention #DepressionAndChronicIllness #disability #DisabledLife #DoctorVisits #Dysautonomia #DysautonomiaAwareness #energyEnvelope #Exhaustion #Fatigue #HealingShame #health #HealthJournal #insomnia #InvisibleDisability #invisibleIllness #life #LifeWithDysautonomia #ListeningToTheBody #livingWithChronicIllness #livingWithMECFS #LongTermIllness #MECFS #MECFSAwareness #MedicalGaslighting #mentalHealth #MigraineWarningSigns #MyalgicEncephalomyelitis #NervousSystemDysfunction #nervousSystemRegulation #NonRestorativeSleep #OrthostaticIntolerance #pacing #pacingWithMECFS #patientAdvocacy #PEM #postExertionalMalaise #postViralIllness #rest #RestorativeRest #selfCompassion #ShameAndIllness #Spoonie #SpoonieLife #symptomTracking #tinnitus #UnderstandingChronicIllness #wellness #writing
burningbecksHammer:
An der Charité Berlin wird ein Test zur "Objektivierung" (messbarer Nachweis) der PEM entwickelt.
Aktueller Stand: frei zugänglich.
Und gemessen wird nicht mit irgendeiner Goldrandlösung, sondern einem Plastik-Gerät vom Online-Marktplatz eures Vertrauens!
Sowas gibt's ab 20€. 🤯
*We measured the HGS with a digital hand dynamometer (CAMRY, model: SCACAM-EH101) in two separate sessions with a recovery break of 60 min between the sessions.*
https://www.mecfs.de/was-ist-me-cfs/pem/
Studie:
https://link.springer.com/article/10.1186/s12967-021-02774-w
#LongCovid #PostCovid #MECFS #PEM #PostExertionalMalaise #Fatigue
5-page post-exertional malaise ( #PEM) fact sheet
https://www.s4me.info/docs/PEM_Factsheet.pdf
Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM
-References
This was very popular a few months ago so I thought I would re-share it.
#PostExertionalMalaise #PEM
#MEcfs #CFS #pwME #LongCovid @mecfs @longcovid
kit lecter 🦇👹def paying for yesterday, it's hitting me hard today, completely knackered.
something new though: my eyes started hurting. like, my eyeballs, as if they were strained? no idea what the heck that's about, since I barely looked at a screen. today still really uncomfy, even with eyes closed.
not happy about this development, nor the sometimes blurry vision. /grumbles 
#MECFS #CFSME #ChronicPain #ChronicFatigue #Spoonie #SpoonieLife #ChronicIllness #PostExertionMalaise #PostExertionalMalaise #TheConsesOfMyQuences
something new though: my eyes started hurting. like, my eyeballs, as if they were strained? no idea what the heck that's about, since I barely looked at a screen. today still really uncomfy, even with eyes closed.
not happy about this development, nor the sometimes blurry vision. /grumbles
#MECFS #CFSME #ChronicPain #ChronicFatigue #Spoonie #SpoonieLife #ChronicIllness #PostExertionMalaise #PostExertionalMalaise #TheConsesOfMyQuences
one of the (many) downsides of having a chronic illness and in particular experiencing post-exertion malaise, is that you need to decide which activities are worth it or not.
I'd purposefully kept myself on mostly bed rest the last few days, to avoid a potential flare-up since I was having somewhat not good days, in preparation of going out to see my friend today.
now, my pain and fatigue levels are approaching critical, and I feel like shite, and I expect to be paying for it for at least the next week.
but mental health wise, it was so fucking worth it. I had a great time.
but fuck if I don't hate the conses of my quences.
#MECFS #CFSME #ChronicPain #ChronicFatigue #Spoonie #SpoonieLife #ChronicIllness #PostExertionMalaise #PostExertionalMalaise #TheConsesOfMyQuences
I'd purposefully kept myself on mostly bed rest the last few days, to avoid a potential flare-up since I was having somewhat not good days, in preparation of going out to see my friend today.
now, my pain and fatigue levels are approaching critical, and I feel like shite, and I expect to be paying for it for at least the next week.
but mental health wise, it was so fucking worth it. I had a great time.
but fuck if I don't hate the conses of my quences.
#MECFS #CFSME #ChronicPain #ChronicFatigue #Spoonie #SpoonieLife #ChronicIllness #PostExertionMalaise #PostExertionalMalaise #TheConsesOfMyQuences
Free webinar today in just over 2 hours wherever you are in the world.
Register here:
https://iecho.org/public/program/PRGM1699044218879IERCAXHJ8Y
I have been impressed by Amy Mooney in the past and have no reason to believe she will be anything but good in this webinar.
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
#PostExertionalMalaise
