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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

#61

Post by cstrahan »

atleastoptimal wrote: post #11

[flagged]

Hehe, you sound like almost every doctor I’ve had… despite having at least one objective metric to show that something was wrong immediately after contracting EBV: Testosterone and Estradiol dropped by (and remained at) about 65%. Took three years of joint pain (common low estrogen side effect, what a surprise), muscle soreness/weakness, and the death of a formerly lively sex drive (2 months into a fantastic relationship — maybe I was depressed by having it too good?), etc — before I said “screw it, I’ll go to a TRT clinic”.

I’m still a far cry from my former self, but everyone around me has seen the positive difference that unfucking (at least part of) my hormones has made. But hey, maybe that’s all psychosomatic, including the swollen lymph nodes that for a year were visibly protruding out.

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

#62

Post by Madmallard »

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…

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 mitochondrial dysfunction. My urine malondialdehyde levels are off the charts high. All this excessive oxidative stress and cellular respiration starts shutting down everywhere. I have been walking miles per day for a long time now trying to alleviate it and I still cannot run or do any intense exercise. Toxic insults, genetic vulnerabilities, antibiotics that induce mitochondrial dysfunction, and many other things cause these insults. I've talked with others that had their mitochondria tested via mass spectroscopy and there's loss of ATP compared to healthy controls and blocked active sites.

Our toxic environment and lifestyles and drugs are ruining everyone's physiology.

It's really depressing seeing doctors just not remember anything from their schooling and come up with really ignorant and patient-harmful perspectives on chronic disease processes ruining society in 2023.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4136529/

https://pubmed.ncbi.nlm.nih.gov/23825301/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6182158/

https://www.sciencedaily.com/releases/2018/10/181001101943.h...

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

#63

Post by beaker52 »

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…

Anecdotally, my ex-wife suffered from CFS. She’d get bouts whenever she needed to do something she didn’t particularly want to do, to the point of predictability. She’d lost all ability to challenge her response to these kinds of situations.

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

#64

Post by interpenetrate »

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…

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 retreat from Freud. Central sensitization syndrome seems like such a concession to the medical model, which I guess puts it in alignment with the poverty of therapy ("mindfulness," etc.).

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

#65

Post by experimenting »

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…

Chronic fatigue syndrome resulting from SARS-2 infection should be contextualized and understood from chronic fatigue syndrome resulting from original SARS from 2003. Presentation of which should be different from what you see in practice.

- An exploratory study of nurses suffering from severe acute respiratory syndrome (SARS) - Long-term Psychological and Occupational Effects of Providing Hospital Healthcare during SARS Outbreak - Mental Morbidities and Chronic Fatigue in Severe Acute Respiratory Syndrome Survivors: Long-term Follow-up - Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study

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

#66

Post by lindsaywaterman »

b800h wrote: 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.

Interesting - yes my take on this is that gaming is a dissociative activity, so typically the symptoms will resolve during the activity, but afterwards will make CSS/CSS worse.

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

#67

Post by lindsaywaterman »

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.

MD here - I'd disagree. Although I've heard the same take from many other phsyicisans! Anyone who has worked with the condition (I've had 100s of CFSers by now) knows it's a pretty distinct syndrome. The CFS push-crash cycle especially is quite distinct.

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

#68

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.

I should also mention, and I hope others notice this thread too, that I have fermented about 5 bulbs of garlic into 1kg of raw organic honey. It takes about 10 days or so to ferment into a pleasant sweet smelling garlic odour. The garlic is much easier to eat and I don’t effect the typical garlic odour. I like to crush each clove with the heel of my palm using a knife to open it up a bit and release its juices. Then place the few dozen bulbs into a large mason jar and cover with raw unpasteurised honey. It will ferment for a few weeks, so release the pressure each day. I suggest turning the jar over and sitting it on its lid then base each morning and evening because the garlic on top tends to float up. The result is a sweet and subtle garlic smell that arises from the jar when opened. Apparently a little garlic honey drizzled on ricotta cheese smeared on sourdough toast is amazing… I’ve yet to try it but will soon!

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

#69

Post by lindsaywaterman »

interpenetrate wrote: post #64
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…

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.

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

#70

Post by doingtheiroming »

tauberian77 wrote: post #57
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 a…

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc. etc. etc.) but at no point, is there a department of immunology that takes over or even contributes.

I've worked my way through azathioprine (poisons your bone marrow to reduce white blood cell count - great for getting skin cancer) to vedolizumab which targets a single gut immune system signaling molecule. I'm lucky in that both have induced full remission which means all the inflammation related symptoms go away, not just the colitis. But I know many people who aren't that lucky and who get some symptoms controlled while others continue unabated. And then there are folk like you who seem to get nothing.

The immune system in complex in the proper sense but we still treat the problems it causes reductively. Worse, most of the research that is done treats it reductively also. If COVID had a silver lining it was that it seemed immune system research got a couple of decades of research done in two years. But when I'm talking to my GI, I really feel that nothing has changed and that at some point, I'm going to flare again, get deeply depressed, be unable to move properly or exercise, lose feeling in my toes and after the steroids have ruined me a bit more, I'll be stuck on a new IBD drug and will hope for the best.

We need these diseases to be treated systemically, as a class and for the immune system to have it's own specialists in research and treatment. They would be able to act as sherpas for sufferers but more importantly, would be a point of nucleation for new ideas about the immune system since they would be exposed to the gamut of problems sufferers face.

It makes me angry, which is probably a flare-risk factor...

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