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The responses are surprising, at least for me. It does seem to show that clinicians have a different view than patients, and that researchers have somewhat different views than clinicians. CCC are the overall winner and IOM criteria are in the second place. ICC has surprisingly low support...

I believe what is meant is tolerance of low standards of evidence, and that if we want to achieve better results than those of the last 30 years, we should be holding ourselves to higher standards. In my eyes there is certainly a problematic tendency in the ME/CFS community but also the medical...

It's nice to see a neurologist on TV saying this illness is often confused with burnout and made worse by graded exercise therapy.

A question I have is why would there be EVs containing proteins that have to do with the actin cytoskeleton and focal adhesions, and what does that have do with ME/CFS? Reading up on the function of these proteins, one thing that might fit with some of the ME/CFS theories is altered cell...

I find this offensive and also think that the authors are perpetuating pseudoscience. As former adolescent that had what the authors would probably consider somatic symptom disorder, I received a lot of disbelief and indifference and I think they contributed significantly to a worse outcome...

The big news is that SS31 is the most effective drug tested so far. It completely normalizes patient results on the nanoneedle. It also has no toxicity at the doses used so there shouldn't be a problem taking it for life, if that was necessary. The other big news is that blood cell...

The comments by Ron at the end about it being one or many diseases, and accuracy of clinical diagnosis were interesting. He thinks it makes sense to consider it one disease, even though we don't know for sure, because then the prevalence is higher and bureaucrats have no excuse to further...

Maybe!

I do not want to reveal the name. If they want, in time, they will make a statement on their own. I am hoping that NIH will investigate these claims in their own intramural study.

The host on two occasions suggested to him that he was fearful of increasing activity. I wonder if any of their patients would spontaneously say that without any therapists suggesting it to them.

The patient says they were able to increase their activity levels and return to work and it's presented as if that was thanks to the therapy. The evidence however says CBT does not lead to any objectively measured increase in activity levels, and multiple studies show no increase in employment...

@debored13 There is a very general argument against sending ME/CFS to "special CCI/AAI doctors" and that is the lack of published evidence. I don't see prejudice or ignorance having anything to do with this.

It is useful to know that other doctors have similar concerns as Edwards. An important argument against CCI/AAI in ME/CFS is that there is a lack of published evidence.

A person that is involved in ME/CFS research at the NIH agreed that the evidence for craniocervical surgery being relevant to ME/CFS is very weak.

I wonder why so many people think that psychiatric diagnosis implies illness that isn't real. Could it have something to do with many patients having their reality denied and being given a psychiatric diagnosis that doesn't even fit their symptoms and situations? Or maybe with overuse of ideas...

This classification system has too much ideological baggage to be useful.

"patient involvement" that does not include dissenting voices is just a way to let researchers deflect criticism of insufficient patient involvement while continuing to do exactly what patients don't want.

Coincidentally, a while ago I sent a hair sample to researchers, who sent me back the results. I have low hair manganese, cobalt, magnesium, lithium, molybdenum levels. I have been reading about what this could mean. Manganese seems like it could be relevant to the observation described earlier...

I agree. It would be nice to have a scientist saying that it's a serious chronic illness and that we know it has a heritable genetic component and that we're now trying to find it. Because people don't take ME/CFS seriously. I noticed that my POTS is taken more seriously despite in my case...