ME/CFS Alert Episode 102: David Tuller Interview

[Sisyphus]

Good point, @Invisible Woman, another stigmatization of ME. Most dismiss it, so pwME with mild cases may dismiss it too, or are too busy struggling to stay afloat to find out about ME. The medical guidance they get may be, or is frequently incorrect.

Also, at the milder end of the scale, pwME may not have received a diagnosis, or
doctors may tell them they will get better, which at this point in scientific development is probably faulty
management. Their mild form may worsen, and then they're hooped.

In my opinion, the mild cases are even more confounding, because they cannot be clearly diagnosed. I believe, based only n=1 of personal experience, that there is a mild phase of this disease that does not include the post exercise crash.

But that is the unique feature that differentiates it from other diseases, so without Abnormalities in standard blood tests or other easily identified symptoms, there’s a little weight to know what you have, unless you throw a larger but driscriminatory net of symptom sieving. The symptoms noted by Ramsey in the 1950s are actually very helpful for detecting the early phase, but nobody reads his papers.

 

[Sean]

In my opinion, the mild cases are even more confounding, because they cannot be clearly diagnosed. I believe, based only n=1 of personal experience, that there is a mild phase of this disease that does not include the post exercise crash.

Quiet possible, maybe even likely, that almost all mild cases go undiagnosed/misdiagnosed, and that this group constitute the majority of people with the disease.

Also possible that there is a prodromal or (relatively) dormant phase, that accounts for any alleged 'pre-onset psycho-behavioural pathology', and a bunch of other generally sub-clinical and undiagnosed/misdiagnosed pathologies.

I would not be surprised if an accurate diagnostic test reveals a far bigger problem than is currently estimated, and that many have this problem from birth or fairly early on in life, well before currently recognised onset.

This field is currently wide open. About all we can be sure of at this point is that ME features is something corresponding to what we call PEM, and that the psycho-behavioural approach is not providing explanations or treatments.