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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

#81

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 regard…

Thanks for these - don't have an opinion on either but will look into. Broadly, I think immune dysfunction is a feature of most cfs so there is often a positive EBV test, or HSV test. I suspect this is more "downstream" than causative of CFS. However, it may be that there is a biomarker in the mitochondrial function, bone marrow etc...I hope one is found!

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

#82

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…

Sounds like a really bad explanation that has 0 root in physiology. I have CFS and I had a cardiac stress test and my VO2 max is 20, despite only being 33 years old. It's literally half of what it should be for my age. That's worse than having heart failure. I have a severely impaired lactate threshold and severe exercise intolerance. The other people I know are similar. Autonomic dysfunction has roots in chronic mit…

I'm really sorry you're suffering so much with this. As a 33 year old a ME/CFS diagnosis represents such a loss. I should know as I got CFS as 32! Now after recovering myself and working with 100s of pts, ... well I have my opinions. I def think there is mitochondrial and other physiology involved so in that I agree with you. I'd just say - try some pacing, see if you can get into the mindfulness. Maybe it will help!

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

#83
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.

So did the cut out have any positive effects on your mental or physical health? Do you suffer from symptoms like CFS or BFS or other something that might potentially be triggered by stress?

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

#84

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.

Ouch, you're coming at me red hot there! To be clear, I think post-viral syndromes are a common "proximal" cause of CFS. If a patient doesn't have an underlying dynamic of chronic dissociation, and doesn't already have a few other CSS syndromes, then I think it's unlikely they will develop CFS as a post-viral syndrome. Cheers.

To me this seems suspiciously like confusing heightened awareness of a problem, or inability to treat it early, with cause.

People who seem likely to be diagnosed seem less likely to happily sleep for 12 hours a day for a few weeks after a viral infection, more likely to blame themselves for their state and more stressed by awareness that something is wrong.

Naturally, if a rich layabout has the problem anyway, then we can look to their childhood and find at least one trauma.

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

#85

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…

It seems dodgy to talk about "chronic avoidance/dissociation" being the "underlying issue". The word "underlying" is usually used to refer to the cause, when it's clearly a response. I think this will result justified distrust of your advice, despite your experience.

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

#86
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…

> consuming two crushed garlic cloves daily

how did you find out about that? did this affect your romantic life?

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

#87
post #85

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…

It seems dodgy to talk about "chronic avoidance/dissociation" being the "underlying issue". The word "underlying" is usually used to refer to the cause, when it's clearly a response. I think this will result justified distrust of your advice, despite your experience.

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.

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

#88

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…

This sounds like "it's all in their head" with extra steps and disregards findings of actual physiological differences in people with ME/CFS.

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

#89
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.

Any particular class of game? Are we talking AAA console games or casual mobile games, or everything?

I was particularly fond of grand strategy.

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

#90
post #83
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.

So did the cut out have any positive effects on your mental or physical health? Do you suffer from symptoms like CFS or BFS or other something that might potentially be triggered by stress?

Yes - cutting out games resolves my apathy and lack of energy. I probably do have stress and tiredness caused by high cortisol from work, but concentrating on physical exercise as a remedy seems to be the most effective way of coping. Gaming compounds it, as does consumption of social media, particularly long-form video like YouTube.
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