The Setpoint Trap: A New Way to Think About ME/CFS (Desmolysium.com)

[rapidboson]

Wanted to share a blog post, an interesting read. The author is an anonymous doctor.

The Setpoint Trap: A New Way to Think About ME/CFS - Desmolysium

If I were a researcher and had to decide what to research, I would probably research myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The disease is beyond fascinating (and scary) and I personally know quite a few people who have had their lives derailed by it. ME/CFS is probably the...

desmolysium.com

Edit: Clearly not a scientific paper - nonetheless expressing interesting thoughts in my opinion.

 

[Eleanor]

Contains quite a few ungrounded assumptions ("A very simple formula that helps to predict the development of ME/CFS is disease severity times the time it takes until complete viral clearance"; "Individuals with CFS all have a similar phenotype. They have [...] a host of psychiatric symptoms (e.g., a tendency to be anxious)"; "It seems that type-A personalities are overrepresented among CFS folks"...).

The author should join here and work through those questions!

 

[rapidboson]

Yes, this is surely not at a scientific level of what we're looking for here at S4ME! Absolutely agree!
Interesting though that other people also are trying to hypothesize the topic.
Shared it more as a curiosity than as a sound scientific hypothesis

 

[hotblack]

A biohacking MD
https://desmolysium.com/
There’s a lot there, can’t say I’ve read it in great detail but it seems to have a certain perspective
The Long Covid piece that apparently led to the ME/CFS piece
https://desmolysium.com/covid/

 

[Murph]

This blogpost is not unhelpful, it's a person with some interest in the disease kicking the tires of some ideas, large and small. This is part of the intellectual environment, alongside forums like this, and formal research.

It contains a few things.

One is the idea of "setpoints" which seems to be another way of expressing the idea of "bi-stability" that so excites Robert Phair. Essentially a system with multipl stable equilibria and the possibility of being shifted from one to another and being unable to get back.

This is also related to Naviaux's idea of salugenesis: that getting from sick back to well is a process that needs to function properly.

The author uses obesity as an analogy for setpoints, which I don't love, but don't mind. it's another metabolic condition that is frustrating to combat and highly stigmatised. Although it can be temporarily defeated by pure suffering (an obese person can be starved thin, there's no parallel where we can be forced from our setpoint).

The post also contains a few hypotheses: fast-clearing viruses don't lead to me/cfs. slow-clearing viruses do. It's a neat idea. And it is presented as a speculation, not a fact, which is a legitimate thing to do. And the idea that exercising during convalescence makes you more prone to getting me/cfs. I know I ran out on the Footscray Hockey field on that ill-fated day in 2002 and felt so strange I had to ask the coach to put me back on the bench in the first half. But I don't know whether staying home that day would have changed the rest of my life. Maybe!

It discusses the possibility that the disease is maintained by epigenetic markers, or maybe by neuron death, which would be much worse.

Yes, this is surely not at a scientific level of what we're looking for here at S4ME!

I'm not sure I agree ! Hypothesis creation is part of science, meta-cognition about the categories into which me/cfs falls, the parallels it has with other illnesses, and how to conceptualise it- this is a legitimate topic. Not everything has to be, you know, lists of mRNAs with bonferroni-adjusted q-values for their fold changes!

We are allowed to discuss ideas! The ones in this blogpost are well-considered, probably wrong - as are most hypotheses - but worth having read.