My head feels full of cotton wool today so hoping I can add useful thoughts
The criteria themselves are not of much practical value.
This is my initial reaction too. It seems a bit like ‘sometimes it’s this but it can also be that’ when this and that cover almost all possibilities.
We seem to have circular definition problems because there have been poor definitions. So we don’t have a bio marker for the bad definitions (perhaps in part because it isn’t describing just one disease, but also lack of funding). So then we try to write a better definition (without a biomarker) which includes the different experiences, but doing that ends up of something that doesn’t have much practical value.
I wonder if we need to separate out an advocacy definition from specific clinical/research subgroups? There is value in having a unified, umbrella identity from a campaigning point of view but is it more useful to study specific subgroups? For example, perhaps pre and post 3 year duration, and there’s indication that it’s useful to separate out men and women.
Attributing symptoms to autonomic problems is a bit more tricky.
Temperature control is hypothalamic but I am not sure it is autonomic.
Temperature control is from the hypothalamus (keeping a homeostasis view over things) but inappropriate perceptions/response to temperature can be an autonomic issue. I attribute this to POTS in my case. I wonder whether (helpful, somewhat treatable) dysautonomia diagnoses could be missed with this definition of ME. Or are they categorising ME as a type of dysautonomia?
if you have a poor autonomic response then you expect to get no tachycardia on standing.
Not with POTS - the tachycardia is to compensate for the gravity effect of the blood falling downward without the appropriate autonomic response of constricting blood vessels to push it back up. In this sense the tachycardia should prevent fainting (though it isn’t always sufficient). Or do you mean something different?
my understanding is that electrophysiological studies do not demonstrate nerve of muscle impairment.
I have read differently but it’s unusual for EMG etc to be done so the evidence isn’t strong either way. If I can find the examples I’ll post.
Personally my EMG was abnormal (short spiky motor units) but not specific to other diagnoses. The nerve conduction bit was fine. Doctors disagreed about what it meant. The electrophysiologist thought it was like myositis, my neurologist some type of myopathy, the neuromuscular specialist was happy to dismiss it. But of course there’s a possibility this is indicating ME is a misdiagnosis for me. I do fit a classic ME definition but as we know the definitions aren’t great (I could have mito and related Atypical Periodic Paralysis instead).
ME is essentially different from the type of post viral state common after an EBV infection
just about every other symptom seems to present in various other illnesses also.
If we forget for a minute about getting everyone to fit, I think there’s a cluster of symptoms which seem distinct in combination. My mother in law watched Unrest the other day and that was one of her main impressions. Eg What we’d call sensory symptoms such as light intolerance, reacting badly to sound and touch in a way which is like shutting down. It is somewhat like autism but our response is very different.
it is such a slippery word, meaning such different things to different people.
At the Chronic Illness Inclusion Project we’ve been playing with the concept that fatigue isn’t a synonym of energy impairment/exertion intolerance. What people with spoonie style conditions are experiencing is energy impairment but the repercussion of stepping outside the energy envelope isn’t necessarily fatigue (it could be any number of symptoms depending on specific bio issues). What do you think?
