It's a shame the makers of this video adhered to the older, discredited view that post-exertional malaise in ME/CFS is caused by deconditioning - every time they say 'deconditioning' you need to mentally cross that out and replace it with 'problems with blood circulation or cellular metabolism that are not yet fully understood'. Apart from that it's pretty good!
Agreed. When people hear 'deconditioning,' their natural response is 'all these people with ME/CFS need is to get back into condition,' ie, vigorous exercise. So badly wrong.
Yeah, it’s not a decondition, because you can be the fittest person, then get M.E. and from that day on, you won’t be able to exercise, you heart rate will go bananas and the PEM runs you down. It’s the illness doing this, not decondition.
Can you please remove deconditioning from the video? That is not helpful or accurate for people with post-exertional malaise or post-exertional symptom exacerbation.
Good video except for the false claim that deconditioning is a factor in causing a lower Vo2 Max. Derrick Lonsdale and Chandler Marrs may have identified a way to help PwME eliminate Lactic Acid. It looks promising.
I hate the “mitochondria, not hypochondria” tagline. HATE IT. Unnecessary and does a disservice by even mentioning the possibility. I won’t share this video with family or friends bc of it. A shame bc it’s otherwise a good summary for them. Myhill made a mistake putting that stupid phrase into circulation and then perpetuating its use. Please consider editing your video!
I wish this video had also pointed out that lots of mitochondria are in the brain, that much of our glucose is used by the brain. Thus folks with ME/CFS often crash from 'minor' emotional or cognitive exertion -- an argument with a spouse, or a Zoom meeting. It's gotta be clear that the crash is real, not emotional manipulation, but mitochondrial dysfunction, both involuntary and intransigent. You can't willpower away an anaerobic crash. I am planning to share the video though, because for many folks with ME/CFS folks, their families already claim that it's simply hypochondria, deconditioning, and laziness, solvable by more exercise and the willpower to get well.
Their first priority was to educate that it is a REAL condition (since many still think its a lack of motivation). Then their funding ran out. One thing you can do is monitor your heart rate (eg wear a chest strap heart monitor for best accuracy...smart watches don't respond as quickly). Set it to alarm when you reach a high heart rate (use lower than you think you need! Then increase it only if you aren't crashing afterwards. Note a crash can occur days after an overexertion so it takes trial and error)
Great video. The only issue I have is the emphasis on deconditioning being the cause of lowered anaerobic threshold. I was an athlete and almost immediately my threshold was diminished significantly even though my fitness was still present. So while eventually de conditioning is a factor, the decreased mitochondrionial functioning pre-exists this and in fact caused the deconditioning. No amount of exercise will improve the mitochondria once they are damaged and in fact more exercise creates more free radicals further damaging the mitochondria. This is the core reason the PACE study recommendations are dangerous and ineffective.
i agree. When people say it's because of deconditioning, they forget we led very busy lives and then one day, that abruptly came to an end. Many with ME are type A over achievers.
It's a shame the makers of this video adhered to the older, discredited view that post-exertional malaise in ME/CFS is caused by deconditioning - every time they say 'deconditioning' you need to mentally cross that out and replace it with 'problems with blood circulation or cellular metabolism that are not yet fully understood'. Apart from that it's pretty good!
Agreed. When people hear 'deconditioning,' their natural response is 'all these people with ME/CFS need is to get back into condition,' ie, vigorous exercise. So badly wrong.
Yeah, it’s not a decondition, because you can be the fittest person, then get M.E. and from that day on, you won’t be able to exercise, you heart rate will go bananas and the PEM runs you down. It’s the illness doing this, not decondition.
Can you please remove deconditioning from the video? That is not helpful or accurate for people with post-exertional malaise or post-exertional symptom exacerbation.
Doctors: CFS is untreatable
Dr. Myhill: Hold my salt pipe!
This information has been invaluable. Thank you.
Good video except for the false claim that deconditioning is a factor in causing a lower Vo2 Max. Derrick Lonsdale and Chandler Marrs may have identified a way to help PwME eliminate Lactic Acid. It looks promising.
Where is best way to find there details
This is EXCELLENT!!! Thank you for this explanation!
I hate the “mitochondria, not hypochondria” tagline. HATE IT. Unnecessary and does a disservice by even mentioning the possibility. I won’t share this video with family or friends bc of it. A shame bc it’s otherwise a good summary for them. Myhill made a mistake putting that stupid phrase into circulation and then perpetuating its use. Please consider editing your video!
Yes!
I wish this video had also pointed out that lots of mitochondria are in the brain, that much of our glucose is used by the brain. Thus folks with ME/CFS often crash from 'minor' emotional or cognitive exertion -- an argument with a spouse, or a Zoom meeting. It's gotta be clear that the crash is real, not emotional manipulation, but mitochondrial dysfunction, both involuntary and intransigent. You can't willpower away an anaerobic crash.
I am planning to share the video though, because for many folks with ME/CFS folks, their families already claim that it's simply hypochondria, deconditioning, and laziness, solvable by more exercise and the willpower to get well.
Why didn't you say what to do to improve?😢
Their first priority was to educate that it is a REAL condition (since many still think its a lack of motivation). Then their funding ran out.
One thing you can do is monitor your heart rate (eg wear a chest strap heart monitor for best accuracy...smart watches don't respond as quickly). Set it to alarm when you reach a high heart rate (use lower than you think you need! Then increase it only if you aren't crashing afterwards. Note a crash can occur days after an overexertion so it takes trial and error)
I exercise enough to not have a high heart rate.
Fatigue improved 😊
Hypochondria is health anxiety
Great video. The only issue I have is the emphasis on deconditioning being the cause of lowered anaerobic threshold. I was an athlete and almost immediately my threshold was diminished significantly even though my fitness was still present. So while eventually de conditioning is a factor, the decreased mitochondrionial functioning pre-exists this and in fact caused the deconditioning. No amount of exercise will improve the mitochondria once they are damaged and in fact more exercise creates more free radicals further damaging the mitochondria. This is the core reason the PACE study recommendations are dangerous and ineffective.
Similar story here. I went from power walking 5 miles a day to Not being able to walk 5 feet without crashing.
i agree. When people say it's because of deconditioning, they forget we led very busy lives and then one day, that abruptly came to an end. Many with ME are type A over achievers.
What's the PACE study? Where/how can I find it?
Exactly!
Love this video! Would love to see your sources if possible, thanks :)