Does existing science sufficiently demonstrate that exertion is the correct focus concept?

[Samuel]

i am not in any shape to guarantee responses, but i have written notes for many years, and would be interested in your comments and i will try to make some semblance of sense:


1.

believe it or not, i am not convinced that we are at a point where we can make a pathognomon[-ish] that is narrowed to only a few of the many intolerances.

i think it is possible that the pem hypothesis is subtly but significantly wrong. by pem hypothesis i mean a strict narrowing of pathognomon-ish to what normal people call exertion. or activity.

of course, for science it can be useful to narrow to a part of a possibly larger whole for the time being. but we do much more than that by formalizing opinion on pem.


2.

i am also not convinced that it is good to stretch ordinary meanings of words like exertion too much. for science or for activism.

for example, i think classifying poor sleep or looming as forms of exertion can be too much to ask of listeners.

they won't understand the unusual lexicography, /or/ the science is not yet settled and understandable by them.


by analogy, the little uninformed officials at cfsac hear peterson (eta: klimas?) say cf and forget everything except fatigue. they were probably told by their bosses to attend.

consider the fda meeting participant who said she might have done differently on ampligen if she had known how serious the disease was.

so i am wary of saying pem, and then making exertion cover intolerances. the multisystem nature and variation of the disease will be lost. severity too.

"just turn your disease off for my convenience!"


but i don't want to talk about alternate names for the same concept. i want to make sure the concept itself is coherent, consistent with facts, agreed upon, and distinct.


energy metabolism a la naviaux or hanson is a different concept. it is mechanism, not symptoms. not yet a cohort filter, but a set of hypotheses.

to me the concepts need nailing down. and our narrowing to exertion might actually mislead.


perhaps as only one possibility, exertion is one of many intolerances. and some energy mechanism underlies all of them.

it would not surprise me if it turned out that most pwme get a pem effect from only exertion, while, say, more severe (or certain genotypes, exposures, comorbidities) get a pem effect from more intolerances, such as sleep or looming.

it would startle others to hear this! because we have been hammering on pem = exertion or activity. (and then trying to clarify that we don't mean ordinary exertion.)


3.

to complete my skepticism, i am not yet convinced that everybody has compatible definitions. consider the distinction between pem and crashes.

is /everybody/ on the same page?

to carve up the 23 intolerances into those definitions, partly characterizes the disease, thus changing science and activism. so i think it matters.

to be sure, it is likely a /completely obvious and meaningful/ carving for many individuals. and they all have biomedical reality. but it is different for everybody who has different definitions and experiences.


so is it truly ok to carve the pathognomon-ish into only exertion?

all of this is meant as food for thought. not heresy for its own sake.


tldr: i'm with @alex3619: i think we need solid biomedical data. empiricism can overturn theories.


ETA: i realize that i left out poor sleep from the list. this is significant because it is usually thought of as a result, not a cause. [in my case it is a major cause.] i also left out leaving the house, medical/dental [e.g. emergency room chairs not horizontal], and being transported.

 

[Mithriel]

We have to remember that PEM is a concept introduced by the same people who gave us CFS as a name for a disease that required 6 months before it could be diagnosed despite the fact they were called in to investigate an epidemic where the patients went from well to ill overnight.

Originally, ME was the enduring effect some people experienced after being infected during an epidemic. The main distinguishing features were described as variable symptoms, over hours, days, weeks and more, an abnormal response to exercise and an alarming tendency to become chronic. (Just like longcovid to be honest!)

Patient's also showed problems across many bodily systems but mainly the nervous system, the immune system and the muscle system including cognitive dysfunction and dysautonomia.

The CDC's emphasis on fatigue meant that their PEM is too often interpreted as abnormal fatigue when it could just as easily involve swollen lymph nodes, difficulty sleeping and vision problems and lots of pain.

The idea that we can't produce enough ATP when a demand is made on a system so that system stops working properly helps me account for my experience and, better still, helps me work out what to do to improve my life.

It may be completely wrong but would explain why the immune system doesn't work at times, the liver doesn't work at others. I get cold and then my body tries to heat me up but that sudden demand can't be met so I go on getting colder for hours and hours even in a warm room wrapped in blankets.

My temperature is one system I can see at work but I presume that the same thing is going on in my immune system and digestive system.

We all have individual genetics so any variation there could show up in the wide variety of symptoms and if we all have damage in different parts of our bodies that would account for variations as well. MS symptoms depend on which nerve is affected so they have wildly different symptoms as well.

Now that PEM is being used by the BPSers to mean extra tired after exercise, common to all fatiguing illnesses, it may be a term that needs amended.

As Alex 3619 said it is like diabetes. We can concentrate on the amount of sugar in the blood and that is important, but the consequences of having high blood sugar lead to varied symptoms that are important and the causes of high blood sugars need examined as well. Challenging people's bodies with sugar can help work out the consequences and causes so are very useful.