Chronic fatigue syndrome may have a post-viral infection origin • Hacker News Board

Re: Chronic fatigue syndrome may have a post-viral infection origin

#221

Post by pixl97 » Mon, Sep 11, 2023, 6:12 PM UTC

whimsicalism wrote: post #166

AnimalMuppet wrote: post #144

Earlier quoted context omitted.

It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.

There is still no identified viral mechanism for CFS. So yes, you will continue to find many doctors that deny that there is convincing evidence for viral causes of CFS because that is the reality of the current situation.

If I had to make guesses, my take is a viral+immune system interaction. You get the virus which causes your own immune system to respond. In that response we get a 'partial match' to something inside of our own system. This leads to a low level inflammatory attack against your own system.

In type 1 diabetics there is some evidence of a post viral auto-immune cause in some cases.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570378/

Re: Chronic fatigue syndrome may have a post-viral infection origin

#222

Post by lindsaywaterman » Mon, Sep 11, 2023, 6:13 PM UTC

cascades42 wrote: post #194

akdor1154 wrote: post #28

Earlier quoted context omitted.

You could be completely right in some cases, but the way you present this is completely disregarding a professional researcher, peer reviewed and published paper, and honestly quite decent pop sci writeup. I don't think that level of dismissal is fair or respectful unless you accompany it with a relevant criticism of the research itself.

I'm a neuroscientist who published on central sensitization and chronic pain. Unfortunately, I was forced into retirement by chronic fatigue syndrome. The linked article and others have convinced me that CFS can be caused by viruses. There's one important and tricky question: is a viral infection necessary to trigger CFS in humans (such as long COVID or in this linked article), or is an extremely stressful series of…

Nice response thanks for that. I’m also a cfser but can’t really point to any viral thing personally. I appreciate your skeptical eye.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#223

Post by EatingWithForks » Mon, Sep 11, 2023, 6:13 PM UTC

whimsicalism wrote: post #137

kaitai wrote: post #110

Earlier quoted context omitted.

The reason folks are unhappy with your take is that many people are personally adversely affected by doctors and others ignoring their physical symptoms. It's worth looking up Stephanie Aston of New Zealand, who just died at age 33; she apparently had Ehlers-Danlos syndrome. Several doctors told her she was faking her juvenile arthritis etc. People like accusing others of faking their symptoms because it allows the a…

Yes, it it not a good moment politically to discuss the psychological correlates/causes of disease. Probably hasn't been since the AIDS crisis, to be honest. In future decades we will hopefully be more mature around these subjects. e: To be clear, the comment about AIDS was about the era of patient advocacy that it engendered.

It's super weird to me to claim CFS is caused by psychological issues. Imagine all the people who were whining about COVID shutdowns and isolating for 14 days or whatever, with people frothing at the mouth about how depressing and how stunted their children are for not going to school. Okay, wow, looks like CFS forces you to do all that isolating/missing school/etc, maybe that causes mental illness the way it caused that for the broader population...

Re: Chronic fatigue syndrome may have a post-viral infection origin

#224

Post by morsch » Mon, Sep 11, 2023, 6:18 PM UTC

bowsamic wrote: post #211

morsch wrote: post #111

Earlier quoted context omitted.

It's true that you can be fired during the probationary period, for any reason including "excessive" sick leave. But the probationary period is limited to six months, by law.

The probationary period at my wife's job here in Hamburg was a year

Ah. Then she was probably in a civil service position (teacher, police, etc) for which for some reason there are entirely different rules. For employees in the private sector, the limit is 6 months: https://www.gesetze-im-internet.de/bgb/__622.html

But IANAL.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#225

Post by paulmd » Mon, Sep 11, 2023, 6:20 PM UTC

whimsicalism wrote: post #159

paulmd wrote: post #158

Earlier quoted context omitted.

> The fact that patients consistently react in this way (or worse) I think is why we rarely discuss true causes of CFS nowadays in the medical industry. Well, it’s a vicious circle isn’t it? A lot of issues are dismissed by the medical community (and I disagree with the characterization that “it’s somatic” isn’t dismissive in practice) for decades and decades and simply not studied, until the cause can be medicalized…

> These aren’t real issues worthy of study unless a causal mechanism can be identified There are plenty of people studying somatic causes of CFS, they just get death threats [0]. I think the focus should be on destigmatizing 'somatic' explanations. That we view somatic explanations as dismissive for real conditions is not a problem with the explanation because some real conditions are psychosomatic and that is a fact…

You know, the point of this post was that “medical science is pretty bad at recognizing real, non-somatic causes of these diseases when the cause is not obvious, and instead tends to handwave onto somatic causes, and people generally find this offensive especially when the cause is determined another few years later and they’re asked to pay $50k a year for something their doctor was sure wasn’t real two years ago”.

And yet you’ve somehow both completely missed this point, and deflected onto “but doctors get pushback and even personal threats when they try to double down on this even harder”. Yeah, don’t default to telling patients it’s all in their head, after a while it gets offensive, especially when a few years later you try and charge them $50k a year to treat a disease you told them wasn’t real.

“Somatic research” is fine on paper but in practice it’s usually an excuse to deflect from a disease that cannot be adequately explained in medicalized terms. Everyone knows “somatic” means “in your head” and that inherently leads to a course of treatment that’s “get the patient to believe it’s not real”. And since many of these diseases do have medical causes that are not somatic (but not adequately medicalized for treatment) this gets offensive after a while.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#226

Post by bowsamic » Mon, Sep 11, 2023, 6:21 PM UTC

morsch wrote: post #224

bowsamic wrote: post #211

Earlier quoted context omitted.

The probationary period at my wife's job here in Hamburg was a year

Ah. Then she was probably in a civil service position (teacher, police, etc) for which for some reason there are entirely different rules. For employees in the private sector, the limit is 6 months: https://www.gesetze-im-internet.de/bgb/__622.html But IANAL.

No, she is at a private engineering startup. Her old boss was fond of breaking the law though

Re: Chronic fatigue syndrome may have a post-viral infection origin

#227

Post by lindsaywaterman » Mon, Sep 11, 2023, 6:21 PM UTC

spinningD20 wrote: post #193

lindsaywaterman wrote: post #66

Earlier quoted context omitted.

Interesting - yes my take on this is that gaming is a dissociative activity, so typically the symptoms will resolve during the activity, but afterwards will make CSS/CSS worse.

Serious question: Why would this be any different than reading a book? Is the implied suggestion, that, anything that is not "real" is bad? Does watching a tv show, movie or youtube video, reading a novel, or listening to podcasts of people discussing things (either fictional or "real world") have the same supposed impact? What about listening to a co-worker tell me about their weekend? How do we define a disassociat…

Good question - one of the soft clinical signs of a person with css I’ve noticed: they come to clinic w a thick fantasy novel in hand.

So imo every activity can facilitate dissociation to a different degree depending on the activity and individual. Gaming, gambling, stress eating, and actual substance use out on one end of the spectrum. Hiking, gardening in the middle. And mindfulness body scans on the other end.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#228

Post by pixl97 » Mon, Sep 11, 2023, 6:27 PM UTC

lindsaywaterman wrote: post #122

pjc50 wrote: post #112

Earlier quoted context omitted.

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-tuto…

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.

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.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#229

Post by smearth » Mon, Sep 11, 2023, 6:27 PM UTC

wnolens wrote: post #123

smearth wrote: post #91

Earlier quoted context omitted.

I think conditioning medical students to race other medical students to label health problems quickly- efectively turning medical school into a sleep deprived game of trivial pursuit for competitive, high IQ, mentally resilient, energetic people - only prepares those people to heal simple medical conditions involving 1 or 2 body systems. This functionality is becoming largely replaceble by llm’s who are also competen…

> I’d say ability to sideplank and neck strength are probably two of the most important recovery metrics. Drs don’t understand the psycho-somatic balance of the illness. There is a psychological component but it is a minor component and is driven by physical constraints. Can you explain/corroborate this? The rest of your post really paints a picture of it being about psychological/emotional stress (and suggests diffe…

The physical problem is bigger than the mental problem. There is an underlying physical problem, it just isn’t understood. Because brain fog and pain are the defining symptons then emotional regulation (which is super important also ) gets overblown.

A convalescant event effectively transforms you into a really terrible athlete with shameful recovery periods.

Being physically injured like spraining an ankle is so mentally fatiguing because the brains autopilot modes get temporarily disrupted. It can’t use all its gpu bandwidth and has to switch on other processes to move about.

Proprioception is important, head stability is important, not aggravating the thoracic and cervical spine when moving is important. The stronger you are the more you can achieve without getting to the point of exertion.

There is alot of emotional management necessary for sure - your brain used to work and now it doesn’t. And it hurts to move.

There is also a lot of biochemical management needed to minimise inflammation.

But without a certain level of physical strength then emotional and biochemical management alone won’t allow you to recover.

And it takes grit (which is hard in the face of hopelessness) to get that physical strength back plus a smart diet and supplementation combined with effective emotional management.

If I didn’t have follinic acid in my recovery steps I probably wouldn’t have recovered. If someone hadn’t gifted me a decent bed I probably wouldn’t have recovered. The bed was to support the thoracic spine so I could sleep.

There is a definite physical component to recovery from cfs and this is poorly researched.

Re: Chronic fatigue syndrome may have a post-viral infection origin

#230

Post by JumpinJack_Cash » Mon, Sep 11, 2023, 6:31 PM UTC

kaitai wrote: post #110

atleastoptimal wrote: post #11

[flagged]

The reason folks are unhappy with your take is that many people are personally adversely affected by doctors and others ignoring their physical symptoms. It's worth looking up Stephanie Aston of New Zealand, who just died at age 33; she apparently had Ehlers-Danlos syndrome. Several doctors told her she was faking her juvenile arthritis etc. People like accusing others of faking their symptoms because it allows the a…

> > It's worth looking up Stephanie Aston of New Zealand, who just died at age 33; she apparently had Ehlers-Danlos syndrome. Several doctors told her she was faking her juvenile arthritis etc.

You don't die from EDS, unless it's the vascular type, and even then it's not the EDS but the catastrophic rupture of an artery (abdomen or aortic which has weak collagen due to EDS) that causes the death.

With a prevalence of 1 in 50,000-200,000 you can't fault the doctors for not seeing it or just branding it as very unlikely, of course the accusation of faking an illness should not be tolerated.