The viral origin of myalgic encephalomyelitis/chronic fatigue syndrome (Hanson, 2023)

Stretched

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FWIW, I’m throwing in my 2 cents, after having been to Incline Village 35 years ago, then 6 months later coming down with this plague, CFS, ME, whatever It is.

How to perceive it, in layman’s terms, from one who has chased relief all these years? Consider MECFS, a neurological disorder attributed to stress. The bottom line is that the HEPA axis in the brain getting stuck on wide open. This is where the anxiety hormone production occurs, secreting adrenaline (epinephrine), dopamine, cortisol , et al full time, up regulated rather being on call for distribution when needed.

This chronic upregulation yields varying systemic conditions ranging from severe insomnia to systemic pain to multiple simultaneous symptoms ultimately concluding in total disability. While mind-over-matter meditations can help manage one’s tolerance of the symptoms the best symptoms treatment lies in slowing down the body’s immune system and anxiety. A medical cure remains not as yet on the near horizon since the dynamics were only recently presented in medical schools.

IMO, a reasonable Rx protocol can be had with an empathic, open-minded physician who can think outside the box of outmoded, memorized textbook dogma. Palliatives, if not HEPA regulators are the use of long acting benzodiazepines, e.g. diazepam (Valium) and other neurological depressant… .

Most here can readily access and assemble relative research or clinical experience, piecemeal for presentation to a specialist, caring physician; most usually only vaguely familiar with the dynamics of the treating neuro-processing. Finding that professional is the trick. Forget chasing viral mediation or esoteric cryptic cellular attackers; we’ve got the damn plague! Pursue comfort while the illuminati in labs with test tubes chase down the etiology. ✌🏼
 
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Rufous McKinney

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Pursue comfort

Thats advice I can get behind.
FWIW, I’m throwing in my 2 cents, after having been to Incline Village 35 years ago, then 6 months later coming down with this plague, CFS, ME, whatever It is.
its going to forever bother me that I was milling about Tahoe during this time frame. I've been sick since I was a a year old- so I'm not saying I "picked it up there"...but still.

what kind of stress is it, to be "sick" from the age of one? (and now its 69 years later)
 

Rufous McKinney

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Something is very, very wrong with my spine and neck.

my daughter, the other day: she was moving her hands around showing the new doctor how her Mom likely has cranial cervical instability.

I think it has contributed to THE ENTIRE MATTER. I think that is how I got much worse six years ago.

That doctor indicated I was to get out of the house, and stop sitting around. Oh, OK.
 
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benzodiazepines, e.g. diazepam (Valium) and other neurological depressant
Sorry, but I completely disagree. My most severe decline happened after taking a long acting benzo for ten days only. They gave me no relief but I had a withdrawal from it and went from mild to moderate and bordering severe for a couple of months. Psych drugs are very potent and can destroy a vulnerable nervous system, and protracted benzo and SSRI withdrawal is very similar to M.E in many ways. If pumping people with psychotropics really helped with M.E, we would have known by now and wouldn't argue with doctors their "all in your head hypothesis".
 

sunshine44

The only way out, is through.
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Sorry, but I completely disagree. My most severe decline happened after taking a long acting benzo for ten days only. They gave me no relief but I had a withdrawal from it and went from mild to moderate and bordering severe for a couple of months. Psych drugs are very potent and can destroy a vulnerable nervous system, and protracted benzo and SSRI withdrawal is very similar to M.E in many ways. If pumping people with psychotropics really helped with M.E, we would have known by now and wouldn't argue with doctors their "all in your head hypothesis".

Same happened to me in 2008. Starting coming down with this illness after being put on SSRI and daily benzos for panic disorder. It absolutely was a catalyst in my body’s landscape.
 

hapl808

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2,394
This is the problem - different people react so differently. I've heard people who say benzos were instrumental in their improvements, and others who say they ruined their lives or caused their ME/CFS. No easy answers.
 

Stretched

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Location
U.S. Atlanta
Same happened to me in 2008. Starting coming down with this illness after being put on SSRI and daily benzos for panic disorder. It absolutely was a catalyst in my body’s landscape.
I completely understand your trepidation. OTOH, I’ll share my experience.

I was getting worse in early ‘90’s… . Dr started me on Klonopin, Zoloft and prednisone (every other day)…per Dr Paul Cheney’s articles. I began feeling better…

I stayed with Klonopin and Zoloft for 30 years, able to function at about 50% - 70% level. Then, curiously, I dropped the Klonopin ~2020, due to a &*%^# doctor who did NOT understand the
dynamics of CFS, after saying he did. I went cold turkey, more or less. …A nightmare! It took 2 years to get over that withdrawal. At the end I was left with full blown MECFS.

Coincidentally, I then had an attack of peripheral neuropathy in my feet with severe pain. I got on
Oxycodone for ~2years. During that time the CFS abated to ~50%.

I got off the Oxy, again fast withdrawal and the damn CFS is back with a vengeance! Along with it
is IBS, a very nervous gut biome, which IMO is totally related to the entire complex involving neurotransmitters.

All during the time from onset to current I read the research, tried various palliatives, including attempts at cure with anti-virals, retrovirals, et al. They all did nothing but make things worse. At this stage I’m pretty much convinced it’s all about the HEPA upregulation as I described above.
I’m wary of the benzodiazepines but for me they make a difference. They are difficult to obtain due to the abusers and druggies.
 

hapl808

Senior Member
Messages
2,394
They are difficult to obtain due to the abusers and druggies.

I wouldn't blame abusers and druggies - that's a bit reductive. They are difficult to obtain because the industry was very cavalier about handing them out with few warnings and high dosages. Then they pivoted and stopped handing them out, labeling anyone who was now dependent (often because of following their own medical advice) as druggies and abusers. They did the same with oxycontin.

If you're on benzos and want to get off them, doctors just shrug. There's very little understanding of addiction and very low success rates. Why are some susceptible and some aren't? We really don't know.

Otherwise I agree - your story shows how differently people react.
 

Rufous McKinney

Senior Member
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14,019
I feel lucky, I took Xanax infrequently; then, I was taking half a dose, for sleep, and managed to ditch it without any withdrawals.

so I have a STASH of them, outdated but what the heck.
 

sunshine44

The only way out, is through.
Messages
1,229
I completely understand your trepidation. OTOH, I’ll share my experience.

I was getting worse in early ‘90’s… . Dr started me on Klonopin, Zoloft and prednisone (every other day)…per Dr Paul Cheney’s articles. I began feeling better…

I stayed with Klonopin and Zoloft for 30 years, able to function at about 50% - 70% level. Then, curiously, I dropped the Klonopin ~2020, due to a &*%^# doctor who did NOT understand the
dynamics of CFS, after saying he did. I went cold turkey, more or less. …A nightmare! It took 2 years to get over that withdrawal. At the end I was left with full blown MECFS.

Coincidentally, I then had an attack of peripheral neuropathy in my feet with severe pain. I got on
Oxycodone for ~2years. During that time the CFS abated to ~50%.

I got off the Oxy, again fast withdrawal and the damn CFS is back with a vengeance! Along with it
is IBS, a very nervous gut biome, which IMO is totally related to the entire complex involving neurotransmitters.

All during the time from onset to current I read the research, tried various palliatives, including attempts at cure with anti-virals, retrovirals, et al. They all did nothing but make things worse. At this stage I’m pretty much convinced it’s all about the HEPA upregulation as I described above.
I’m wary of the benzodiazepines but for me they make a difference. They are difficult to obtain due to the abusers and druggies.

They are very powerful drugs and took me years to titrate off from. They destroyed my health.

And, are associated with this:

https://www.forbes.com/sites/anurad...lt-in-long-term-neurological-dysfunction/amp/
 

Rufous McKinney

Senior Member
Messages
14,019
The ZOLOFT was just AWEFUL.

It's too bad I dont' really know what the heck happened when I tried the Zoloft. I wrote several pages in a notebook, of how sick that made me. And how it caused me to choke right away. (throat shut down)

But notebooks don' save me any longer: who knows which one and where I documented all that.

I recall my left jaw froze up then popped, like I now have Lock Jaw. It's bothered me ever since, and is now where I have "my official lymphoma". (ie. biopsy right there of that same area...)
 

Stretched

Senior Member
Messages
712
Location
U.S. Atlanta
They are very powerful drugs and took me years to titrate off from. They destroyed my health.

And, are associated with this:

https://www.forbes.com/sites/anurad...lt-in-long-term-neurological-dysfunction/amp/
Yes, it‘s hard to argue against the potential problems AND withdrawal, albeit anecdotal, “might cause… .”

OTOH, pragmatically, if flipping on the light switch reduces symptoms… ? I’m not selling yet-to-be-discovered other dimension cosmic forces but relief is welcome.🤷🏼
 
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