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When a disease is difficult to diagnose, what I think happens is that only the most severe cases are diagnosed, and the medical community forms a view of the disease that is biased towards the most severe and easy to diagnose presentations. And the other patients might be told they can't have...

@Jonathan Edwards you also said once something along the lines of ME not being a mitochondrial disease because genetic mitochondrial disease causes death and coma, not ME-like symptoms. I think you asked an expert in mitochondrial disease and that is the answer you got. Yet I read what other...

In PEM I lose some of my capacity to do work. I don't just feel unwell, the body just doesn't work as well as normally. The ability to exert force decreases or so it feels, and endurance drops sharply. Instead of being tired after a 20 minute walk, 1 or 2 minutes can be enough. Instead of...

This doesn't seem like a sufficient reason to discard this finding. Insufficient oxygen extraction might occur together with other problems that cause malaise.

Graded exercise is a good way to have patients who are unwell to stop coming. To the doctor this would appear as trend of patients getting better and doing GET.

My 24 hour ECG report says: constant sinusoid rythm, normally conducted, with typical recurrent sinus arythmias. Is this of any importance?

Well put. The problem is the often absurdly exaggerated claims of efficacy and the pseudoscientific model that the proponents have constructed. There is nothing wrong with focusing for example more on relaxation in your life, but when it's turned into some sort of cure-all technique for...

This could be useful https://projectreporter.nih.gov/reporter.cfm

This is related to the findings of abnormalities in the urea cycle, the ornithine transporter gene and use and recycling of amino acids by the body.

I'm suspicious of diagnoses based on self-reported symptoms and think they are even more unreliable than most people think. I could emphasize different aspects of my fatigue and it coud easily lead to different diagnoses if one were to base a diagnosis around how fatigue is described even...

What a sad person to write a book attacking patient's credibility.

As far as I can tell, over the course of my illness I went through periods were there was some room to improve my fitness but not much because I'm already operating close to my limit anyway. This idea of patients having flawed cognitions that lead to them doing a lot less than they could are...

Stingl is probably a new name for many. He is a neurologist who started taking an interest in ME/CFS a few years ago and he has already seen 500 patients. He practices in Austria.

@Jonathan Edwards may I suggest editing the post and adding some additional information? I am not sure that everyone on the list even knows what claims are being made.

Merged thread In retrospect I can recognize a prodromal phase. I have also thought that the disease changes over time and that some of the observed heterogeneity may be due to patients being observed at different stage of progression.

What is actually needed is research to understand what is going wrong so that it can be treated. This pandemic has shown hat research can be done very rapidly when there is the will. So do the same for long covid and ME/CFS and stop wasting time trying to manage what you don't understand (or...

I have a sensation in my head that is the very similar as the one that can be felt by someone that suddenly stands up after lying down and then feels faint and dizzy. This feeling is always there and not as intense as the one that occurs when suddenly standing up. I'm not sure if I still meet...

In my opinion the fatigue severity scale poorly measures absolute fatigue. Measuring daily activity is probably much more accurate, especially if other reasons for low activity level are controlled for. Anyway I think exertion intolerance is the key feature, not fatigue.

Yes it appears to be partially cultural. The dark side of a strong work ethic may be a hatred towards those who are seen as giving in to fatigue, or who don't work and don't have a cast iron excuse.

The patient community does not have to demonstrate that they are not anti-CBT. It's not a given that CBT has to be given and that we just need to find out which kind of CBT is acceptable for ME.