Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Chronic fatigue syndrome may have a post-viral infection origin

medicalxpress.com

Post reply on HN
Print view View original

141–150 of 348 posts

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

#141

Post by spondylosaurus »

doingtheiroming wrote: post #70
tauberian77 wrote: post #57

Earlier quoted context omitted.

In my case, the CFS like syndrome was all in my head in the worst fashion possible. After COVID, I developed a cross reactive species of antibody targeting my hippocampus and the opioid receptors in my brain. I have been bedridden since I was 17. I also manifested severe orthostatic intolerance and peripheral neuropathy that put me in the lowest 1 percent of neurite density. I was diagnosed at Mass General Hospital a…

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc.…

Hey, fellow IBD/autoimmune sufferer here!

By chance, have you seen a rheumatologist? I got diagnosed with spondylitis first and Crohn's second, so I took the rheumatologist > gastroenterologist path, and a rheumatologist sort of does what you describe about systemic immune monitoring.

Not perfectly, to be fair. And rheumatology is a criminally overlooked and understaffed specialty. But my rheumatologist has been really good at helping me tie together various issues that seemed unrelated but actually shared a root cause. And, immune problems being what they are, I'd wager most of his patients are in a similar boat, so the whole "let's figure out why your guts are bad AND your joints hurt AND your skin is awful AND... etc" thing is business as usual on his end.

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

#142

Post by Izkata »

lindsaywaterman wrote: post #48
willemmerson wrote: post #36

Earlier quoted context omitted.

So you're saying it's all psychological? If this is true, why are so many with ME/CFS/Long COVID responding so well to LDN? I have had ME/CFS for 25 years and also practised mindfulness and pacing all that time yet it did nothing, but when I took LDN it instantly worked.

I think the psychological/physiological duality is false. Think of blushing for instance: embarrassment causes vasodilation. I suspect CFS is at its core some type of autonomic dysfunction. This is why many medications do work: some of my patients have had great response to LDN and I'm glad it's been beneficial for you. As for the mindfulness and pacing...yes not everyone gets benefit. A lot of troubleshooting requir…

> I think the psychological/physiological duality is false. Think of blushing for instance: embarrassment causes vasodilation.

Right, it's not a duality, the word for what you're describing is "psychosomatic".

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

#143

Post by throwaway2562 »

vimy wrote: post #127
throwaway2562 wrote: post #124

Earlier quoted context omitted.

My partner suffers from post-Covid issues: can you tell me what you mean by LDN?

Low dose naltrexone.

Thank you! Seems like there are both positive small studies and self-reported anecdata available

https://reddit.com/r/covidlonghaulers/s/2SzkM5ca5K

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

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

#144

Post by AnimalMuppet »

hirako2000 wrote: post #131
thenerdhead wrote: post #115

Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection? Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it. https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa... Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other…

Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes" I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.

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

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

#145

Post by whimsicalism »

akdor1154 wrote: post #28
lindsaywaterman wrote: post #21

Physician here. Imo CFS is best understood as the endpoint of an evolution within the nervous system that is increasingly called "central sensitization syndrome." (CSS) This syndrome is caused by a chronic dissociative or avoidant stress response, usually having it's origin in early childhood adversity. Prior to developing CFS, most individuals have other manifestations of CSS, such as IBS, chronic pain, TMD, etc. Ev…

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 disagree - it is fine to talk about the broader context of research without being either deferential to one datapoint or explicitly refuting that one datapoint.

There are lots of other papers fingering EBV as a cause of ME/CFS, but there are many, many papers showing the similarities of the population with this condition and other conditions that have been shown to be psychosomatic, showing correlates between CFS-like conditions and perception of illness as stronger than past EBV infection (something not true of most other illnesses), etc.

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

#146

Post by fnordpiglet »

hirako2000 wrote: post #131
thenerdhead wrote: post #115

Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection? Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it. https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa... Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other…

Why is it such an issue that people deny it? Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes" I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.

* fatigue is something everyone feels sometimes and the answer is to push through it for most people

* it’s impossible to observe fatigue objectively, it just appears people are lazy or low energy

* there’s no known (or at least there wasn’t last time I researched it) bio markers for CFS

* there’s no known evidence of viruses causes CFS, just speculation

Etc

Things have changed a lot over the last 30 years. I think most people including doctors accept CFS is real whereas that wasn’t the case in the past.

The case for the cause of CFS is still very much open, and I think it’s probably naive to say CFS is caused by viral infections. It’s probably the case that some CFS is caused by viral infections, but again, it’s hard to differentiate, it’s hard to prove, and even if you did, so what? CFS probably also has autoimmune causes, which themselves are diffuse in their root causes and mechanisms, and even psychosomatic roots in burnout and other extreme stress syndrome. Finally, when the causes are psychosomatic, that isn’t code for “fake,” it is literally a real issue it’s just not caused by an extrinsic agent. The health impact of extreme prolonged stress is not a joke, and it’s not the persons “fault.” There seems to be a real need for people to pin their CFS and other health issues on some external factor and not the abuse they’ve (or others have) subjected their psychology and by proxy their body to.

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

#147

Post by avgcorrection »

b800h wrote: post #27

Largely unrelated, but the thing which leaves me feeling most wiped-out is playing (modern) computer games. I've cut them out completely, as they have no positive benefits and leave me listless and unmotivated.

Playing Starcraft 2 (RTS) was incredibly stressful for me. I don't recall if I got any joy from it.

Warcraft 3 was similarly stressful.

The RTS I play now is Age of Empires 2 DE. And only campaigns. And it's not any more stressful than other games for me.

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

#148

Post by whimsicalism »

throwaway2562 wrote: post #143
vimy wrote: post #127

Earlier quoted context omitted.

Low dose naltrexone.

Thank you! Seems like there are both positive small studies and self-reported anecdata available https://reddit.com/r/covidlonghaulers/s/2SzkM5ca5K https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9250701/

That "study" doesn't even have a control but, then again, I wouldn't expect much from research around long covid.

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

#149

Post by ryanklee »

TheSpiceIsLife wrote: post #132
thenerdhead wrote: post #115

Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection? Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it. https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa... Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other…

There was once a term in more popular use, at least by doctors, that seems to have fallen out of fashion: Post viral sequela sequela noun MEDICINE plural noun: sequelae a condition which is the consequence of a previous disease or injury. "the long-term sequelae of infection"

I listen to a podcast called This Week in Virology that's run by some prominent virologists and I hear this term used often, so I don't think that it's fallen out of fashion. Laypersons probably never much used the term to begin with.

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

#150

Post by whimsicalism »

smearth wrote: post #95
lindsaywaterman wrote: post #87

Earlier quoted context omitted.

You’re totally right that worse somatic symptoms create a viscipus cycle of avoidance and worsening symptoms. I do think that a chronic pattern of avoidance is what causes somatizing in the first place tho. Peace.

You might think that but it doesn’t heal anyone. Recovery rates for cfs are abysmal, I’m surprised you aren’t ashamed of your profession’s performance in this area. You seem comfortable placing responsibility for the illness on your patients “avoidance”. Yet it is initiated by a virus and everyone has different levels of mitochondrial density, resilience and health and different inflammatory cascades. “Avoidance” of…

> I do think there is a chronic pattern of some doctors avoiding shame at their self-perceived inadequacies caused by their medical school trivial pursuit trauma conditioning that is useless for complex problem solving and then projecting that shame onto their patients in order to minimise the cognitive dissonance surrounding their ineffective treatment plans for chronic conditions

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. Many, many lay-people assign strong negative moral associations with having any somatic cause of their symptoms.

Post reply on HN