5 ms·

> If it turns out that ME/CFS doesn't has a physical marker, then what? The problem is that ME/CFS is similar in presentation to other conditions such as for e

> If it turns out that ME/CFS doesn't has a physical marker, then what? The problem is that ME/CFS is similar in presentation to other conditions such as for example certain kinds of depression. The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS. Thus there are two different groups of people, one who you are helping by encouraging them to exercise and one who you are harming. If you can't tell them apart the system is bound to hurt someone.

GordonS 3y ago
PEM (post-exertional malaise) is a core symptom of ME/CFS, but I've never heard of it being a symptom of depression. IME it's more correct to say that depression can be a symptom of ME/CFS - having your life blow up can do that.
- rocqua 3y ago
  The point was that for depression, exercise is a treatment. Whilst for ME/CFS, exercise is harmful. Hence it is important to make a distinction between the two, so you give proper treatment.
- soudiere 3y ago
  Post-exertional malaise is a poor diagnostic indicator, the sensitivity and specificity are quite low. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ First problem, I do not have ME/CFS, let's use the Maes et al (2012) scale. 0-5 scale, 5 being the worst. "1 means mild exacerbations of fatigue/pain/neurocognitive symptoms following exercise (either cognitive or physical)" Yep, after a longer, harder than normal bike ride I'm quite fatigued, in quite a bit of pain (bad back, knee, shoulder), and can't think particularly well. "2 means moderate exacerbations of symptoms following exercise; 3 means severe, incapacitating exacerbations lasting less than 24 hours;" Accurately describes what happens when I do HIIT style intervals that exceed my work capacity, or what it's extremely hot outside. Dreadfully exhausted, usually have to nap, or lay on the couch, every muscle hurts, extremely sore, difficult & painful to move for 24-72 hours. I'm not saying ME/CFS does not exist, this is just a terrible indicator. The worst part is making it so specific obscures the large body of existing research that would provide tools for treatment protocols here, eg work capacity in athletes.
  - GordonS 3y ago
    I'm not saying the existence of a symptom (PEM) is as good as a diagnostic test; rather, in the absence of diagnostic tests, they are "enough" to diagnose CFS. And PEM isn't the only common symptom, there are others, such as a constant lactic acid-like burning sensation in the limbs. I know you said you don't have CFS, but trust me - the fatigue we suffer after PEM is nothing like "normal" body fatigue after exercise. I think we'll find a diagnostic test eventually. At least, I hope we do.
soudiere 3y ago
All exercise excerbates ME/CFS? Only certain types? Cochrane systemic review, "exercise therapy for chronic fatigue syndrome", 8 studies, 1518 participants "Investigators compared exercise therapy with 'passive' control in eight trials, which enrolled 971 participants. Seven studies consistently showed a reduction in fatigue following exercise therapy at end of treatment, even though the fatigue scales used different scoring systems ... Serious adverse reactions were rare in both groups (RR 0.99, 95% CI 0.14 to 6.97; one study, 319 participants; moderate‐quality evidence)" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419524/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419524/ Fairly plausible, mitchondrial biogensis is an adaption to exercise, it may be impaired in ME/CFS patients, but not totally inhibited, and more mitochondria may lessen the severity of the pathogenesis of ME/CFS.
hollerith 3y ago
The only way a competent clinician can fail to distinguish CFS from depression is if the patient is outright lying. Most CFS patients for example have exercise intolerance, in which after the patient exercises more than his or her limit (which in severe cases could be walking on level ground for 10 minutes) everything proceeds like it does for a healthy person for 24 hours, then he or she becomes incapacitated for days. Eating lots of carbs, glutamine and creatine will tend to make the period of incapacitation shorter than they would otherwise be at least in non-severe cases of CFS. And this is consistently what happens after every exercise session that goes above the patient's individual exercise threshold. And if the threshold changes, it does so only gradually over a period of months. And if it changes, it changes for reasons other than how diligently or frequently the patient exercises. My experience (in California) has been that most doctors have been willing to assume I am being truthful, but a significant fraction seem to want to spend their time and energy only on conditions that the patient cannot be deceiving them about.
quenched 3y ago
> The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS It's proven to be the case. A repeat cardiopulmonary exercise (2-day CPET) is currently the only widely replicated biomarker for ME/CFS. Only ME/CFS shows a reduction in performance and a lowering of ventilatory threshold on the second day. Anyone else (sedentary, cancer, heart or lung disease, MS, depression) will show an improvement. [1] A study this year showed a striking effect looking at the metabolites in urine after exercising female ME patients vs sedentary healthy controls. The ME patients just did not excrete metabolites as the healthy controls did. [2] "This indicates that ME/CFS patients have a general metabolic dysregulation that is part of their exercise intolerance and PEM in which altered metabolic excretion is a contributing factor." There's also a very simple clinical discriminator between ME/CFS and depression. If you ask a depressed person what they would do if they were suddenly cured, their answer will be "Not sure, I don't know, I can't think of anything, nothing really." If you ask someone with ME/CFS the same question, the response would be "Go to the shops, drive my car, walk on the beach, see my friends... etc". [1] https://www.mdpi.com/2227-9032/8/3/192 https://www.mdpi.com/2227-9032/8/3/192 [2] https://www.mdpi.com/1422-0067/24/4/3685 https://www.mdpi.com/1422-0067/24/4/3685

GordonS 3y ago

PEM (post-exertional malaise) is a core symptom of ME/CFS, but I've never heard of it being a symptom of depression. IME it's more correct to say that depression can be a symptom of ME/CFS - having your life blow up can do that.

rocqua 3y ago
The point was that for depression, exercise is a treatment. Whilst for ME/CFS, exercise is harmful. Hence it is important to make a distinction between the two, so you give proper treatment.
soudiere 3y ago
Post-exertional malaise is a poor diagnostic indicator, the sensitivity and specificity are quite low. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/ First problem, I do not have ME/CFS, let's use the Maes et al (2012) scale. 0-5 scale, 5 being the worst. "1 means mild exacerbations of fatigue/pain/neurocognitive symptoms following exercise (either cognitive or physical)" Yep, after a longer, harder than normal bike ride I'm quite fatigued, in quite a bit of pain (bad back, knee, shoulder), and can't think particularly well. "2 means moderate exacerbations of symptoms following exercise; 3 means severe, incapacitating exacerbations lasting less than 24 hours;" Accurately describes what happens when I do HIIT style intervals that exceed my work capacity, or what it's extremely hot outside. Dreadfully exhausted, usually have to nap, or lay on the couch, every muscle hurts, extremely sore, difficult & painful to move for 24-72 hours. I'm not saying ME/CFS does not exist, this is just a terrible indicator. The worst part is making it so specific obscures the large body of existing research that would provide tools for treatment protocols here, eg work capacity in athletes.
- GordonS 3y ago
  I'm not saying the existence of a symptom (PEM) is as good as a diagnostic test; rather, in the absence of diagnostic tests, they are "enough" to diagnose CFS. And PEM isn't the only common symptom, there are others, such as a constant lactic acid-like burning sensation in the limbs. I know you said you don't have CFS, but trust me - the fatigue we suffer after PEM is nothing like "normal" body fatigue after exercise. I think we'll find a diagnostic test eventually. At least, I hope we do.

soudiere 3y ago

All exercise excerbates ME/CFS? Only certain types? Cochrane systemic review, "exercise therapy for chronic fatigue syndrome", 8 studies, 1518 participants "Investigators compared exercise therapy with 'passive' control in eight trials, which enrolled 971 participants. Seven studies consistently showed a reduction in fatigue following exercise therapy at end of treatment, even though the fatigue scales used different scoring systems ... Serious adverse reactions were rare in both groups (RR 0.99, 95% CI 0.14 to 6.97; one study, 319 participants; moderate‐quality evidence)" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419524/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419524/ Fairly plausible, mitchondrial biogensis is an adaption to exercise, it may be impaired in ME/CFS patients, but not totally inhibited, and more mitochondria may lessen the severity of the pathogenesis of ME/CFS.

hollerith 3y ago

The only way a competent clinician can fail to distinguish CFS from depression is if the patient is outright lying. Most CFS patients for example have exercise intolerance, in which after the patient exercises more than his or her limit (which in severe cases could be walking on level ground for 10 minutes) everything proceeds like it does for a healthy person for 24 hours, then he or she becomes incapacitated for days. Eating lots of carbs, glutamine and creatine will tend to make the period of incapacitation shorter than they would otherwise be at least in non-severe cases of CFS. And this is consistently what happens after every exercise session that goes above the patient's individual exercise threshold. And if the threshold changes, it does so only gradually over a period of months. And if it changes, it changes for reasons other than how diligently or frequently the patient exercises. My experience (in California) has been that most doctors have been willing to assume I am being truthful, but a significant fraction seem to want to spend their time and energy only on conditions that the patient cannot be deceiving them about.

quenched 3y ago

> The difference is that exercise is thought to help with those conditions and exacerbates ME/CFS It's proven to be the case. A repeat cardiopulmonary exercise (2-day CPET) is currently the only widely replicated biomarker for ME/CFS. Only ME/CFS shows a reduction in performance and a lowering of ventilatory threshold on the second day. Anyone else (sedentary, cancer, heart or lung disease, MS, depression) will show an improvement. [1] A study this year showed a striking effect looking at the metabolites in urine after exercising female ME patients vs sedentary healthy controls. The ME patients just did not excrete metabolites as the healthy controls did. [2] "This indicates that ME/CFS patients have a general metabolic dysregulation that is part of their exercise intolerance and PEM in which altered metabolic excretion is a contributing factor." There's also a very simple clinical discriminator between ME/CFS and depression. If you ask a depressed person what they would do if they were suddenly cured, their answer will be "Not sure, I don't know, I can't think of anything, nothing really." If you ask someone with ME/CFS the same question, the response would be "Go to the shops, drive my car, walk on the beach, see my friends... etc". [1] https://www.mdpi.com/2227-9032/8/3/192 https://www.mdpi.com/2227-9032/8/3/192 [2] https://www.mdpi.com/1422-0067/24/4/3685 https://www.mdpi.com/1422-0067/24/4/3685