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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

#131

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.

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

#132

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"

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

#133

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.

The mind-body dualism is not real and mind & body symptoms can be co-productive.

That said, the evidence of 'actual physiological differences in people with ME/CFS' is not very strong at all (relative to the amount of scrutiny this problem has received) and research on other hypotheses has been halted numerous times due to death threats.

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

#134

Earlier quoted context omitted.

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...

What of the fact that my father and I both get painless clicking when we open our jaws too wide? Unless I'm having an arthritis flare, it doesn't hurt at all, but every dentist I've ever seen has pointed it out with curiosity. That certainly seems like a mechanical issue.

My immediate reaction here is that casting (my) TMJ pain as a matter of emotional avoidance feels a tad dismissive, tbh. Particularly when the pain comes in tandem with flare-ups of other systemic inflammatory issues... unless ankylosing spondylitis is an emotional problem as well :)

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

#135

Occasionally I think the medical world has a communication problem. In 1989 I had some blood work done which checked for Epstein-Barr (it wasn't present) for reasons that made sense at the time. Then I got ME/CFS a few weeks later, and blood work showed that it was present this time. That's not a slam-dunk for Epstein-Barr as a cause, of course, but I thought it was interesting enough to have the data that I talked t…

People have been saying this about post-viral sequelae and EBV and CFS for a long time, but the evidence is just not there.

EBV is incredibly common, it is not surprising that many who have had ME/CFS would have it.

The medical world does not know how to communicate about problems that are likely coproductive of psychological and physical causes, especially in a post-AIDS patient advocacy world, simply because patients do not like hearing that there is anything psychological involved at all.

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

#136
post #95

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…

So what was your cure?

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

#137
post #110

[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…

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.

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

#138

[flagged]

Depression may not be psychosomatic. It may be somatopsychic. Some physical ailments have psychological and emotional side effects. Depression may be rooted in physical ailments negatively impacting mood and brain function.

I don't even understand the distinction you are trying to make. Your mind is part of your physical body. If you are depressed then it is constitutively a physical ailment.

Are people just this bought into mind-body dualism like two centuries later?

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

#139
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.

Same here. I played Last of Us 2 when it came out and didn’t realize how big of a toll it took on me. It put me on edge and left me exhausted. I don’t play video games anymore either, except for some laid back iOS games.

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

#140

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"

That is the medical term for it. PASC is another name for long covid.
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