[pjc50]

Hmm. The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)? This reminds me of a lot of physical/psychological/"it's all in your head" discussions with various sorts of CFS sufferer, most of whom have serious problems getting anyone to take seriously the possibility that it might not be all in your head.

https://www.cfsselfhelp.org/pacing-tutorial reminds me of what the livejournallers called "spoon theory". In both cases the observation is that exceeding one's limits can cause a "crash" of much worsened symptoms. At least it recognizes PEM and doesn't recommend blindly applying graduated exercise therapy.

Do you have any good research on ME/CFS biomarkers?

[Llamamoe]

You're on the nose. Dismissing mystery symptoms like this is doctor 101. As it happens we do have research on ME/CFS causes and biomarkers such as gut dysbiosis toxins[1], deficient SCFA production[2], elevated rates of enterovirus[3] and herpesvirus[4](particularly EBV, HHV-6 and -7) infections. Coincidentally, every single of those things is associated with dementia in old age.

Absolutely everything points at the origin of CFS being down to ongoing infections causing immune response, mitochondrial dysfunction, and sickness behavior. OP's "central sensitisation syndrome" is akin to 19th century's "female hysteria".

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960409/?report...

[2] https://www.medrxiv.org/content/10.1101/2021.10.27.21265575v...

[3] https://web.archive.org/web/20170809125253id_/http://enterov...

[4] https://linkinghub.elsevier.com/retrieve/pii/S13866532067000...

[lindsaywaterman]

I just want to clarify that I absolutely agree that there are a multitude of pathophysiologoc changes in cfsers, including mitochondrial dysfunction, hrv changes, ongoing viral reactivations, deranged cytokines etc. I think the difference in our opinions is just that I my opinion, these physiological changes are downstream of cns dynamics in the lateral frontal pole, pituitary gland, amygdala, and cerebral cortex. At any rate - thanks for your thoughts.

[Llamamoe]

I'm not convinced. The human brain is an organ like any other- evolution had vested interest in keeping its function adaptive, and to this extent even social stress induced depression and vulnerability are adaptive responses. Most severe chronic illness - mental or otherwise - isn't.

[lindsaywaterman]

Thanks for your response - I see cfs as the result of almost “wear and tear” on the system. I think the “push-through” approach to life that many cfsers had prior to developing the disorder is very adaptive. I often meet v cfsers who had been v high functioning in their careers. It’s just that the adaptive response is not sustainable long term for some people…thanks for listening and cheers!

[dimal]

There is a huge amount of empirical evidence that adverse childhood experiences disrupt the HPA-axis as well as other biological systems. It's also well-known that people with PTSD have low cortisol. These aren't controversial findings. They've been found over and over.

I have CPTSD and it's very clear to me that the symptoms of this "mental disorder" are in my body, first and foremost. And it's clear that after I go through a flashback, I'll end up going through symptoms that many would describe as chronic fatigue syndrome or adrenal fatigue. So I don't think the comment is to say "It's all in your head", but to say that the mind and body are actually connected. (Shocking!) It's a two-way street. I'm actually relieved to see a medical professional say something that I've been thinking for the past few years.

[lindsaywaterman]

Love to see this response, thanks.

[pjc50]

"The body keeps the score"?

[lindsaywaterman]

Yes everyone is stuck in mind/body duality. From a neuroscience perspective all psychology is instantiated through the nervous and endocrine systems. So it’s reasonable to me that a habit of mind such as chronic dissociation - could have an outcome in physiology such as cfs. Like you I am patiently awaiting biomarkers or other reliable indicators.

[pixl97]

The idea of mind body duality is crazy to me, yet I see so many people kind of stuck on it.

If you take a modern computer controlled car and start changing other parts of it, such as the tires, fuel or even something like a spark plug starting to go bad, the computer in the car has to adjust itself to maintain its performance envelope. Change the system enough and the computer will no longer be able to compensate and likely throw some error codes in your direction.

And the car, compared to the human body, is a much simpler system with much more discrete and well defined parts. The mind/body integration is far more complex. The control systems to maintain homeostasis without ones organs demands killing off the rest of the body are truly something to behold.

[whimsicalism]

While it may be true that CFS people have trouble getting doctors to take their symptoms seriously, it is also true that researchers who investigated psychosomatic origin of CFS had to to discontinue their research due to the number of death threats they were receiving.

[Gibbon1]

An interesting thing is the number of conditions attributed to psychosomatic causes has been steadily shrinking over the last 100 years.

50 years ago if you had IBS or crohn's disease your doctor would send you to a psychiatrist

[whimsicalism]

This is just not good reasoning. Just because some things have been mechanistically explained in the past 50 years doesn't mean that any arbitrary condition will eventually be non-somatically explained. In fact, the argument (vacuous as it is) could go the other way - anything that has left after we've shrunk the pool so considerably is considerably more likely to not have a non-somatic mechanistic explanation than anything in the original pool.

And FWIW, CBT is effective for IBS. But with the gut-brain connection, we really are pushing up against the bounds of mind-body dualism with stuff like this.

[hinkley]

30 years ago if you had an ulcer they'd send you to a psychiatrist.

[Izkata]

> The argument is that it lies within the nervous system (physically), but then you mention avoidance/dissociation (psychological)?

Psychosomatic exists between these two, which I think is what they're describing.

[pjc50]

.. but is a really poorly understood (set of) mechanisms?