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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

#51

Post by lindsaywaterman »

LeonB wrote: post #29
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…

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

Yes Temporomandibular disorders are included in the group of Central Sensitivity disorders.

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

#52

Post by cstrahan »

alexfromapex wrote: post #2

My money is on Epstein Barr causing it. Even acutely, many are faced with intense fatigue.

That’s my guess. Got EBV back in 2015, and spent about a year with debilitating photophobia, visibly bulging lymph nodes, along with a host of symptoms that still haven’t gone away: excruciating joint pain, muscle weakness, headache and brain fog, anhedonia, annihilated sex drive, etc.

Trying to manage my symptoms, I got a hormone panel to compare pre-EBV. Testosterone and Estradiol dropped by about 65%, where it remained for 3 years until I convinced a doctor to take that delta seriously.

I’m better on TRT now, but I’d say I’m at about a solid 65% of my former self. Joint and muscle pain is gone, but I don’t have the same drive and still struggle with anhedonia. Would love to try a cocktail of things — almost anything really — to feel more alive, but I don’t want to do antidepressants, and I don’t want to be branded “drug seeking”, so I just try to get by for now.

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

#53

Post by nirse »

mchpow wrote: post #5

I was always under the impression that CFS was a non-specfic set of symptoms; a kind of catch-all categorical bucket for an unknown condition. If that's true, then that post-viral infection origin seems misleading.

Why would that be misleading? This seems to be just an attempt to better understand (some of the / potential) causes that unknown condition. Perhaps it doesn't help to diagnose it, as there might not be any direct evidence left in the body to point at the original cause, but in the longer term it certainly helps if you know where to look.

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

#54

Post by mjsweet »

patates wrote: post #38
mjsweet wrote: 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.

Yeah I’m an Aussie and we have fairly robust workplace laws here. For a long time I thought of life as “before chicken pox” and “after chicken pox”. Pretty huge effect on my life particularly the CFS.

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

#55

Post by lindsaywaterman »

baz00 wrote: post #44
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.

The moment this sort of hypothesis turns up I always crow cite your sources . There's very little academic honesty in the area of psychology, a lot of it being coming up with an idea that sounds about right, finding a minuscule dataset to fit to it and then waving hands around profusely about how it's a breakthrough. Tenuous correlation it is mostly.

Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources:

1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-40666-3 2. Using psychophysiologic treatment for long covid and back pain: Donnino, M., Bs, P. H., Mehta Ba, S., Silverman Ba, J., Cabrera Ba, M. J., Yamin, J. B., Mph, B., Ma, R. T., Berg, K. M., Phd, R. E., & Grossestreuer, A. v. (n.d.). Title: Psychophysiologic symptom relief therapy (PSRT) for post-acute sequelae of COVID-19: a non-randomized interventional study. https://doi.org/10.1101/2022.10.07.22280732

and

Donnino, M. W., Thompson, G. S., Mehta, S., Paschali, M., Howard, P., Antonsen, S. B., Balaji, L., Bertisch, S. M., Edwards, R., Ngo, L. H., & Grossestreuer, A. v. (2021). Psychophysiologic symptom relief therapy for chronic back pain: a pilot randomized controlled trial. PAIN Reports, 6(3), e959. https://doi.org/10.1097/PR9.0000000000000959

and

Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, 2020(8). https://doi.org/10.1002/14651858.CD007407.PUB4/MEDIA/CDSR/CD...

as well as a review looking at the connection between early childhood adversity and fibro

Varinen, A., Kosunen, E., Mattila, K., Koskela, T., & Sumanen, M. (2017). The relationship between childhood adversities and fibromyalgia in the general population. Journal of Psychosomatic Research, 99, 137–142. https://doi.org/10.1016/J.JPSYCHORES.2017.06.011

there's a lot out there but year the research is still in it's infancy ...

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

#56

Post by baz00 »

lindsaywaterman wrote: post #55
baz00 wrote: post #44

Earlier quoted context omitted.

The moment this sort of hypothesis turns up I always crow cite your sources . There's very little academic honesty in the area of psychology, a lot of it being coming up with an idea that sounds about right, finding a minuscule dataset to fit to it and then waving hands around profusely about how it's a breakthrough. Tenuous correlation it is mostly.

Yes it's tough, this area of medicine is historically neglected. That's starting to change though. Here are some interesting sources: 1. Neuroscience of dissociation: Bramson, B., Meijer, S., van Nuland, A., Toni, I., & Roelofs, K. (2023). Anxious individuals shift emotion control from lateral frontal pole to dorsolateral prefrontal cortex. Nature Communications |, 14, 1234567890. https://doi.org/10.1038/s41467-023-4…

Thank you - appreciated. I will read these over the next day or so.

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

#57

Post by tauberian77 »

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…

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 at a specialty clinic, so I trust the veracity of their claims.

The problem with CFS is simply that it is a syndrome. It is far too nebulous a label to be of much use. It describes everything because it describes nothing! I have an autoimmune disorder that debilitates me. I don't particularly care if it is labeled as CFS or small fiber neuropathy. @lindsaywaterman, I am curious about collecting a body of documents on my illness; I would be greatly appreciative if you could contribute your professional experiences dealing with CFS patients whether it began with an illness or was simply an unrelated psychological condition lumped in the same category on account of a superficial similarity in symptoms.

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

#58

Post by mercer »

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…

well I do a lot of pacing, so at least I have that covered...

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

#59

Post by mjsweet »

alex_lav wrote: post #41
mjsweet wrote: post #32

Earlier quoted context omitted.

The answer is yes, I think it is better. Personally I’m just not prepared to take Aspirin for more than a few days. So garlic for me. Also I think that anyone who is already on blood thinning medication should consult their doctor.

My partner eats raw garlic every morning and feels great. I definitely think there's something to it, so much so that I'll probably start. It seems like the type of thing that has almost no real negative side effects, so worst case my breath just smells in the morning.

A friend of mine recommended it over a month ago, and I marked him down as “the garlic crowd”. But after some careful reflection I decided to give it try. Glad I did!

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

#60

Post by spondylosaurus »

LeonB wrote: post #29
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…

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 other reply. Strange.

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