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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280928/ For me, the progressive deterioration described as occurring in patients enrolled in a daily walking program in the paper above, is closer than a CPET in approximating what happens in daily life. It's a constant process of finding the right...

You could do an exercise test if you wanted to even while having the flu or otherwise feeling bad.

Some thoughts on the CPET. I agree that the CPET might not be a good test because it doesn't replicate exactly what happens in daily life. Usually what causes crashes for me is not things that resemble a CPET, but more doing too much over a day or several with inadequate rest. It's almost never...

Do you have information that demonstrates that changes to metabolites of the size we're seeing in these ME/CFS metabolomics studies can be reasonably assumed to translate into a substantial symptom burden and disability?

Figure 11 looks interesting. The unknown metabolite 15245 increases after each exercise test in controls, but in patients much less. Maybe this metabolite has an important role in recovering from exercise? Or maybe it's related to some branch of the energy production system that is not working...

I will read this properly later. In the meantime: looking at the change in glutamate-related pathways, maybe the exertion intolerance in ME/CFS is more accurately an intolerance of being stimulated? Also, they found an alteration in “Phytanic Acid Peroxisomal Oxidation". I have a...

"People with CFS believe that they need to conserve energy because there is not enough in the bank" So this sounds like someone read a CBT explanation on how ME/CFS works and came away with false understanding. The explanation being roughly that "it's merely a belief, and if they ignore the...

What CBT for fatigue means here: Renal fatigue explained, Understanding renal fatigue and alternative explanations, Fatigue self-monitoring Assessment of fatigue and personal model of fatigue Finding balance in activities and rest, Patterns of rest and activity and their effects on the body...

I think this is a warning signal that it's not actually improving fatigue. If it did, participation in the therapy would be net energy gain.

I would love to see one of the psychobabblers try to explain how PEM is caused by thoughts and behaviours. Probably they are psychobabblers because they don't even know what PEM is or spend no time trying to make their ideas coherent.

I've heard with the new DSM, more than half the population would be considered to have a psychological disorder.

Wouldn't the equivalent of a "software problem" in a human body be a genetic disorder?

(Responding to a post that has now been moved) I think this is not about pupil responses but movement of the eyes. Saccades are one type of movement of the eyes, where the movement occurs in rapid steps. I read that saccades are generated by the brainstem.

I have the impression that the more severely ill patients don't always understand the patients like me who are less affected. They seem to think there is nothing between their level of severity and being able to function normally but with fatigue, when there is actually a lot inbetween.

“What we’re trying to do is generate a unique ME/CFS signature based on characteristic changes to eye movements, a behaviourial signature that is specific to the disorder that can be used to help diagnose it and monitor the effects of any treatments.” “Tentatively, what we’ve found already...

There is a chance that there will soon be movement from the UK government on a national ME strategy. Remember this? The Action for ME announcements are presumably in anticipation of that, and DecodeME is making this more possible.

Does anyone think that PEM is more likely to occur in "new" situations? Situations that are not a relaxed routine but where you're learning? They don't have to be stressful in a bad way, they can be pleasant and exciting too. I am not sure but have the suspicion that being in an new situation...

TPPP sounds like it could have something to do with cadherins. At least this article says that cadherins interact with microtubules. https://www.ncbi.nlm.nih.gov/books/NBK6079/ Some background information: cadherins and the cell skeleton have come up in other studies before and no one seems to...

An article that explains what TPPP does Tubulin polymerization promoting protein 1 (TPPP1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3925458/

Information on the TPPP variant associated with ME/CFS can be found here : https://www.ncbi.nlm.nih.gov/snp/rs139264145 Nothing interesting stands out. The variant hasn't been cited in any publications (yet seen by the software). It doesn't seem to be a rare variant. Nothing is known about its...