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Some results from the EMEA European survey One of the results was that age of onset <20 years is associated strongly with having severe and very severe ME. Infection trigger about half of cases. The recovered patients group had a different triggering event profile than those who...

Detailed criticism has been published elsewhere already but it still be useful to write an overview of this complex topic situation from our perspective. The main points are I think: White repeatedly claims the treatment is beneficial but this claim is not supported by reliable evidence. If...

Is anyone taking up the task of pointing out the problems with White's ideas? Could David Tuller write an article in their newsletter? I'm really tired of the constant dishonest spin by PACE authors.

The technical term for a situation where a person has two mitochondrial genomes, one normal and the other with a disease causing mutation, is heteroplasmy. Heteroplasmy can vary between tissues. For this reason I suspect that mitochondrial disorders are underdiagnosed.

Really, can we see the evidence for this causal relationship?

It might be a coincidence but there was a recent study which found a possible association between ME/CFS and the TPPP gene. If one looks at the results of genome wide association studies for this gene, glomerular filtration rate comes up repeatedly. https://www.ebi.ac.uk/gwas/genes/TPPP The...

Has medical science developed tests of stamina? By stamina I mean the ability to keep doing an activity for longer periods of time with limited decline in performance or discomfort.

Regarding sustained metabolism. I've been doing walks with other people and one clearly observable difference is that I don't have the same stamina as others, even people who are 30+ years olders and have their own health problems. In comparison to people who are significantly older than me, my...

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?