Has CFS really been a form of Long Covid all along?

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You're positing ME as being triggered by the virus, a theory already put forward in relation to EBV infections.

If I'm understanding his post correctly, I think that the OP is considering the possibility that, rather than a trigger, ME is a virus, in long form.

Long-form COVID is accepted, almost without contest (or at least any that I've come across), as being a series of emergent conditions that are an extended form of COVID, not something endogenous simply triggered by COVID.
I didn’t find this to be a consensus in the articles about the theories behind long covid:

https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html

https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/full

I found that the virus still being active despite the negative tests showing otherwise is one theory among many others (mostly about a way too robust immune response, autoimmunity, abnormalities in the brain, etc), but the vast majority seems to treat long covid as a post-viral condition and not an ongoing infection, hence the alternative name: post-covid syndrome.

And since COVID can be asymptomatic, it could be possible that Robin Soderling was able to be " .... among the very best in the world ..." while still harboring a virus that would eventually overwhelm his immune system and present with symptoms and longer consequences.
Do we have any indication of asymptomatic Covid causing long covid? With all these people, contacts etc tested, this is something that might not go so undetected.

Yes, we can say it was started by coronavirus the same way we can say some past childhood trauma that was always there in the background actually caused it, it just needed a final trigger. Possible, but we have no real indication of either at all, whereas we actually have a very clear starting point with a well-documented event in these cases. I’m not against finding other risk factors, pre-existing genetic predictors etc, but I’m against totally negating the event that started the actual symptoms, saying it wasn’t actually the cause at all. So even if a coronavirus somehow contributes to this, I can only see it as a risk factor, not the sole cause for the above reasons. (And now I’m only talking about the cases triggered by other viruses of course.)

Sorry, I don’t want to sound harsh, I just really don’t see this scenario being too likely.
 

lenora

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Good day everyone.....I was diagnosed with ME approx. 35 yrs. ago. I also had 2 neurological diseases going on at the same time...and had surgery for both. As I was recovering from the first rather devastating surgery, my mother-in-law and husband exposed me to a virus and I was incredibly ill from it.

In retrospect, I now know that I probably had Mono in my teens, but never really had a chance to recover properly. My first sign of ME showed up when I was about 18, and things just went downhill from then. I still worked, re-did houses and had an active social life, and later had 2 children. If I'd had a 3rd, life would have been far different in a big hurry.

My point is that I think virus after virus adds up to ME. Even though people like Jeff W & Jen Brea don't have ME after having their "mechanical problems" with CCI, (I had different "mechanical problems") I still kept mine and it has worsened and then lessened and worsened over the years. But bear in mind that I'm older and have had it for a very, very long time. I think if I'd been diagnosed with the flu at the time, that would have been been noted as the causative factor.

Personally, I've always wondered about it being something that is rather easily caught, especially if you're ill and fighting something else off at the same time. I do think about airborne infection and this: Some people simply have stronger immune systems than others. I've always had problems with one thing or another, but was never babied, nor did it to myself. (I'm not saying others were, or do it to themselves. Please understand that.) I never had time to be ill until I reached the collapse stage.

When you're born with congenital defects, including severe back pain, you just assume that everyone has that problem, at least until a certain age. So that's what I mean by babying myself. I'm just grateful that after all these years neither my husband nor my daughters have signs of any of my multiple problems. Grateful for that, so very grateful. I even held my breath when my grandchildren were born. Thus far all are OK. Again....gratitude. I hope all of you have a fairly good day. Yours, Lenora.
 

Rvanson

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Doubtful,

I was almost 41 when CFS/ME took me down hard. Yes, I had childhood trauma from an alcoholic mother, But five hours after having a meal with my fiancé, I was as sick as ****. I was the only person at the restaurant we had a meal at (we were a party of six) and I had the Chicken Teriyaki, which no one else ordered.

I was sober, as none of us drank any alcohol, and in fact I had a cup of coffee and water. I wrongly assumed that it must have been food-poisoning/ salmonella when it hit me five hours later, alone in my apartment, as sick as all ****. How WRONG I was, thinking I would recover quickly.

It took almost eight months until I was able to work, and that was all I could do. I crashed on the weekends, to re-energize for another week of work, Needless to say, but my fiancé left me for some chump, well underneath her status in life.

No way am I buying into some connection to this Covid-19 virus, and I will NOT take any vaccines that could leave me as I was for a long time, after the initial infection, from the food I ate. Bed-bound, for longer than a man like me can afford. 18 long years working with a disease, that no one thought was anything but "psychological."

Now that I am retired, there is still no way I'll ever let anyone inject me with an untested vaccine, which isn't really a "vaccine", but an mRNA substance, And now we hear of a few NEW variants of COVID-19. No way!

I've not had any kind of "flu" in all of these years, and I do not take the "flu" shots. Never have and never will.
 
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I didn’t find this to be a consensus in the articles about the theories behind long covid:
you didn't find a consensus of any sort in any of the three articles that you posted because there wasn't one. Here are a few excerpts:


FROM THE NATL INSTITUTE FOR HEALTH RESEARCH ARTICLE
“Given the lack of definition of the condition, assimilating evidence into a systematic review is difficult.”


“This first iteration is necessarily far from comprehensive and will contain many gaps and omissions which we hope readers will help us remedy by providing information, links to resources and research studies that we have yet to tap.”

As an aside, diagnosis by popular polled opinion is not science, tho it might eventually prove helpful as a possible guide to actual scientific disciplines, or even lead to links to research that may have been overlooked by the National Institute For Health Research, even tho ‘health research’ is their defining title.

FROM THE NY TIMES ARTICLE:
"Long-haulers who contracted the novel coronavirus early in the pandemic are just about to round the one-year mark. Only with time will scientists be able to determine if long Covid and ME/CFS are the same or overlapping syndromes, or whether they’re distinct and unrelated. For some ME/CFS specialists, however, long Covid already seems like a variant of the condition they’ve spent their careers treating. Carmen Scheibenbogen told me that in her experience, 1 to 2 percent of all patients infected with coronavirus meet the criteria for ME/CFS six months later. In New York, Susan Levine, an infectious-disease doctor who specializes in ME/CFS, finds that long-Covid patients respond to some of the same treatments that help ME/CFS patients, including low doses of naltrexone, which is anti-inflammatory."


I found that the virus still being active despite the negative tests showing otherwise is one theory among many others
I’m unclear about how any of this relates to the interesting question posed by the OP,

HERE'S A QUOTE FROM THE 3RD ARTICLE YOU POSTED A LINK TO, FRONTIERS IN SCIENCE:
“For some people with COVID-19, even those who are only mildly affected at first, the ensuing weeks and months of “recovery” bring a surprise and a betrayal: they do not return to full health. Although nucleic acid tests no longer detect the virus, people still suffer from ongoing symptoms.”
 
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I do not take the "flu" shots. Never have and never will.
I'm with you in my hesitation, particularly considering the genesis of the fast-tracked research and development, as well as the administration that produced that. On the other hand ....

Damn. I really just don't know which way to jump.

Some years back, my husband DB was pressured into taking a flu shot by a well-meaning Dr in the face of what appeared to be a daunting flu season (it turned out it really was), and he not only got a flu (which in itself was unusual, since he's extremely healthy and apparently bug-resistant normally), but was sicker than he'd ever been in his life, and for longer.

He hasn;t had a flu shot since. I'm not sure what he intends about the COVID shot. Probably to wait and see ...
 
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but I’m against totally negating the event that started the actual symptoms, saying it wasn’t actually the cause at all.
I dont think that's what the OP, @Rich D , said or intended ... and I still think that it's an interesting hypothesis,


Sorry .... this quote somehow didnt make it into my longer response, posted above ....
 
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Pyrrhus

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None that I have heard of but it is starting to look like those who only have mild symptoms can get long covid. This seems a bit strange to me.
There appear to be different types of Long Covid. One type may be organ damage that resolves itself over 8-9 months, without ME/cfs-like symptoms.

For the type of Long Covid that clearly resembles ME/cfs, some have speculated that people who had a mild case of COVID are actually more likely to develop this Long Covid than people who had a severe case of COVID, since their body may not have mounted an effective immune response to the virus in the very beginning. Remember that the severity of COVID is partly due to how strong an immune response your body produces. The stronger the immune response, the more inflammation the patient experiences.

(Of course, a weak immune system means more virus, which also means more inflammation, so severe COVID could mean either an overly strong immune response to a small amount of virus, or a weak immune response to a large amount of virus.)

Some people with Long Covid even report that they had an asymptomatic case of the novel coronavirus, but they believe they suffer from Long Covid because their symptoms first appeared at the same time that they were exposed to someone with COVID.
 
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BrightCandle

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We do already certain viruses hide in various places of the body, HIV is one such virus that has been found to hide in places where the immune system can't deal with to explode back later. I don't think its that much of a stretch to suggest given the blood brain barrier that potentially we all have a virus or a collection of different viruses ruining our day hiding out maybe in the brain or some in the ANS. The difference in symptoms could be dependent on where in the vegas nerve the infection had spread and was hiding out, remission could also quite easily be explained by the immune system getting the upper hand.

I was reading two papers that showed some amount of viral DNA found in the ME/CFS patients brains (postmortem). One of the ME/CFS life time doctors I was watching recently was talking about Polio and how similar it is to ME/CFS other than the death part. Having a virus attacking and inflaming the veins through the brain would explain the reduced blood flow and that in itself could be responsible for everything, once the neurons aren't working correctly the brain messes the body up.

I think it is a little sad so little ruling out of these potential avenues has happened in 70 years, it feels like the virus theory has had sufficient technology for quite some time. Lots of hypotheses but its the testing of them that needs to happen.
 

Abrin

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No, not really.

Coronavirus itself is not an unheard-of illness (the highly treatment-resistant common cold is a corona virus), only the current NOVEL corona virus is unusual, hence the NOVEL part.

Multiple forms of corona viruses have been making the rounds since at least 1920, and undoubtedly earlier, so it's entirely possible that what we call ME is actually a side-effect of a COVID virus infection, either detected and symptomatic, or undetected and non-symptomatic.

I think @Rich D 's hypothesis is worthy of consideration and shouldnt be dismissed out of hand....
I am not sure if this hypothesis would account for the ME/CFS like symptoms that comes from overtraining syndrome though.
 

Rvanson

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A couple of years back, I tried to adopt a kitten. He looked healthy, but when he would not drink or eat I knew something was amiss and took him back to the adoption center for evaluation. It turns out that he was infected with the feline coronavirus, which it turns out, can be seen by an orange spot under the felines eyelids. I had them take him back, as it can be caught by other felines, like my own. It is not transmittable to humans, but felines.

Also, cats have their own HIV virus, that is not transmittable to humans, but it will infect other felines.

It was a heart-breaking experience for me, as I had to euthanize and bury my cat "Squeaky" a month before as she developed Feline Kidney Disease (FKD) I nursed her for almost six months, but there came a day when her suffering was too much as she couldn't even walk properly, so I did what I had to do, and had her put down. She was a great cat, but one cannot beat the grim reaper, as for all of us, he will show up and take us from this world.
 
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since I have the type of ME that responds poorly to overextension of available energy, including mental. You seem to be more fortunate.
Okaaaay, I think this made me realize this is not really the type of forum I am looking for. My bad but this is just really not my thing. I wish everyone better health!
 
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I am not sure if this hypothesis would account for the ME/CFS like symptoms that comes from overtraining syndrome though.
Overtraining puts stress on your body, which in turn stresses your immune system, which could trigger a response from a virus, released from more rigorous oversight by the now stressed immune system, busy with other things ....
 

gbells

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The NOVEL coronavirus hadn't been detected in that form prior to 2019, which is why it's called the NOVEL corona virus. But the coronavirus, as I said above, has been around forever, including as the common cold. And the H1N1 flu, along with Bird Flu, Swine Flu, etc, are all forms of corona virus
I don't see how the flu by itself can cause ME because it doesn't block apoptosis and is self limiting.
 

sometexan84

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First off, I think SARS-CoV-2 probably persists in long-haulers. It's the most obvious explanation for the symptoms that seem to stick around.

Here they've shown that SARS-CoV-2 can persist in the intestines, via biopsy.

Which btw, points to the symptoms in long-haulers. Just like persistent Enterovirus in the intestines, SARS-CoV-2 mutates to depend on heparan sulfate binding to attach to and infect intestinal epithelial cells.

And again, like persistent Enterovirus, SARS-CoV-2 uses its proteins (proteases) to cleave important regulators in cells to avoid detection.

But the symptoms... this is likely from molecular mimicry. The spike protein of SARS-CoV-2 is binding to and infecting cells expressing a very specific heparan sulfate (HS) carbohydrate. And when the immune system is dysfunctional enough, and enough cells w/ this specific HS on the cell's surface are infected, the body starts to attack nerve cells with this specific HS on the cell surface.

Now you have autoimmunity targeting nerves that control motor, sensory, and autonomic functions. Symptoms can include anything from pain, weakness, and fatigue, to cardiac and GI issues.

So yes, I do think that chronic fatigue can happen sort of like this but in the form of another infection, or multiple infections.
 
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I don't see how the flu by itself can cause ME because it doesn't block apoptosis and is self limiting.
Until COVID, all flus were believed to behave in roughly the same way in terms of a cell's ability to defend against a virus, so there’s no telling what else might exist out there that hasn’t been documented yet, and is largely eluding science and medical treatment as a result.

I know it’s a stretch, but it’s still a possibility, no matter how distant, and it could mean the difference between what’s now an untreatable, irreversible life sentence, and a simple infection that can be defeated.

HIV used to be a baffling, devastating death decree. Now it’s manageable and treatable …..

It just seems so similar to what happened to a lot of us, I think it is worth considering.
I agree. I found it a thought-provoking possibility, particularly since the originating causes of ME seem to be a mystery to most Drs and even most researchers …
 

Rvanson

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Until COVID, all flus were believed to behave in roughly the same way in terms of a cell's ability to defend against a virus, so there’s no telling what else might exist out there that hasn’t been documented yet, and is largely eluding science and medical treatment as a result.

I know it’s a stretch, but it’s still a possibility, no matter how distant, and it could mean the difference between what’s now an untreatable, irreversible life sentence, and a simple infection that can be defeated.

HIV used to be a baffling, devastating death decree. Now it’s manageable and treatable …..
Yes, but at the cost to taxpayer up to $12,000 per month, HIV not a death sentence anymore. I sure wish the .gov would spend that kind of money of we who have CFS/ME. What I wouldn't give to have some Ampligen.