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Chronic fatigue syndrome may have a post-viral infection origin

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121–130 of 348 posts

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

#121

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…

It wasn't that well known until the people that have been trying to minimize covid since day 1 started talking about it.

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

#122
post #112

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…

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.

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

#123
post #91

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 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 different coping techniques akin to avoidance). I was with you until "sideplank".

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

#124

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…

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

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

#125
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.

Your comment caused me to compare gaming (which I haven't done since I was 16) to doomscrolling. It's a dissociative activity, requiring near zero physical presence or mindfulness. Passive entertainment which I do to take a timeout from the world and avoid the frustration of doing things I don't want to do, like work. But it always leaves me groggy and only begets more behavior of the same type.

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

#126
post #35

I did not get covid but did get the vaccines + 2 boosters. I have been feeling tired etc for the last 6+ months turns out because of the work at home etc and my lifestyle I was not getting enough sunlight and had very low vitamin D levels. I am not white so need to spend longer time in sunlight according to my doctor.

Please ask your doctor if supplements are right for you and how much.

Add to that, avoid multivitamins if you are on medications. Turns out some vitamins, specifically Vitamin C, may prevent some medications to be absorb in the bloodstream.

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

#127

Earlier quoted context omitted.

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…

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

Low dose naltrexone.

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

#128
post #112

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…

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…

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.

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

#129

Earlier quoted context omitted.

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…

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

Heightened awareness of a problem can be related to the cause - these are not distinct.

The comorbidities of ME/CFS make it look very similar to known psychosomatic conditions. Researchers who explore psychological-heritable causes have been forced to stop due to death threats.

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

#130

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…

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.

All I will say is that this is a very personal subject to many (especially the type of person who visits HN) and so a clear look at the evidence might be difficult on a forum like here.

ME/CFS is probably one of the conditions most difficult to discuss in a dispassionate way.

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