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Chronic fatigue syndrome may have a post-viral infection origin

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

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post #7

I've battled with CFS/ME multiple times in my life, each triggered by different ailments. First, it was Epstein-Barr at the end of my tenth grade, leading to two solid years of chronic CFS. Then, at 31, Chicken Pox knocked me out for roughly 18 to 24 months. More recently, from January to August 2021, I experienced "Long Covid," and this July, a bout with RSV left me grappling with CFS once again. My symptoms include…

The garlic is very interesting - given some of the 'blood clotting' theories about long covid - really hoping it brings you long term recovery.

Me too, Covid is a vascular disease and if garlic has the effect on the vascular system that I’m hoping for then I hope to live a longer life.

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

#72

Earlier quoted context omitted.

This is my first time hearing "central sensitization syndrome." I know back ~5 years ago John Sarno's "tension myoneural syndrome" was still the dominant diagnosis in the self-help circles of mindbody illness, and it at least had the mechanism of repression to enrich its explanatory power. Still a far cry from the richness of psychoanalytic theory, but at least it was a move in the right direction after such an epic…

Yes, there's a lot of terminology out there to describe this constellation of symptoms/the process of CSS. The sarno stuff is getting a lot more attention these days as "psychopysiologic" therapy. Things are moving in a good direction and I'm hopefull that repression will be characterized neurophysiologically. See the references I posted to another comment.

Thanks for the articles, I'll have to catch up.

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

#73
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.

I wonder if it's because they're so stimulating with minimal physical effort. So, after playing, you hit the real world where achieving anything useful takes mental or physical energy and the contrast is significant.

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

#74

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…

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…

Hello - I'm not sure I totally understand your question however I am sorry you have suffered so much with this. In my experience there is often an overlap between central sensitization and other chronic illness. So for instance, 30% of people with Rheumatoid Arthrtiis have fibromyalgia. Which means ,they have joint pain and fatigue even when there is no active RA. So it's never wrong to try a pacing approach to see if it helps. Good luck! (cfsselfhelp.org)

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

#75
post #38
post #24

Earlier quoted context omitted.

Honestly, it was the worst 6 weeks of my life. I would not wish it on my worst enemy. Three weeks of incubation, two weeks of breakouts and a week of recovery. My employer terminated my employment two weeks after that. In retrospect, I should have pursued legal action.

> My employer terminated my employment two weeks after that. In retrospect, I should have pursued legal action. I assume you're from the USA? I really hear the high-life stories with some envy and respect but oh boy is there another side of the coin... In any case, I'm sorry to hear that, and hope that it becomes an insignificant unfortunate moment not even worth mentioning in your otherwise happy life story.

I mean, even here in Germany you would probably get fired for being ill for so long unless you had already passed your 1 year probation. My wife had a boss who used to fire people for absolutely anything

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

#76
post #29

Earlier quoted context omitted.

What is meant by TMD? If it’s “Temporomandibular disorders” do you consider those a manifestation of “css”?

Also curious about this. I'd be shocked if TMJ/TMD was more than incidentally psychological. Mine is definitely a mix of genetics (thanks Dad!) and inflammatory. When I started Humira for unrelated reasons, the painful aspects cleared right up... although as I type this comment I just realized the recent resurgence in pain might have to do with how Humira's been less effective for me lately :P EDIT: Ah, just saw the…

Yes so - I have noticed my patients will often get surprising benefit from some random medication, dietary change, etc. But usually, unless they deal with the underlying emotional dynamic of avoidance/push-through, etc, the improvement will not be resilient. Ie the symptoms return after a while...

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

#77

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.

>completely disregarding a professional researcher, peer reviewed and published paper

As someone who used to be on the track to academia, this is something that more people should do.

Most published research is false, and even most of the correct stuff is useless.

I'd go so far as to say any research that hasn't directly lead to at least a physical demo being produced can be safely ignored.

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

#78
post #7

I've battled with CFS/ME multiple times in my life, each triggered by different ailments. First, it was Epstein-Barr at the end of my tenth grade, leading to two solid years of chronic CFS. Then, at 31, Chicken Pox knocked me out for roughly 18 to 24 months. More recently, from January to August 2021, I experienced "Long Covid," and this July, a bout with RSV left me grappling with CFS once again. My symptoms include…

>daytime fatigue, necessitating frequent 40 to 120 minute naps

Few years ago I started to feel really sleepy, even fall asleep during daytime, especially at winter. Turned out to be vitamin D. Taking it helped tremendously. Measured recently - normal, but still slightly low. Increased dose.

So the advice for everyone is: do full blood panel, including vitamin D in particular.

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

#80

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…

I have two questions for you.

First, do you have any opinion on prescripting valciclovir? Apparently some ME/CFS presentations are linked to herpes, and taking valtrex significantly mitigates symptoms. However, in order for this to be effective, it needs to be taken in doses similar to truvada or viramune, not as a short term fix for a herpes outbreak.

Second, any opinion on Bhupesh Prusty's work, specifically regarding fibernectin and a potential biomarker being in bone marrow?

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