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

Messages
73
Has anyone made a direct link? Have we all caught a coronavirus of some sort in the past and got a version of long Covid? many of us think our CFS started when we got a virus, but others think they did not have a virus first. Were those people just asymptomatic? Wouldn’t this theory also explain why there are examples of outbreaks of CFS but no infection was detected, because the infection cleared like it does for Covid?
 

Hip

Senior Member
Messages
17,824
Wouldn’t this theory also explain why there are examples of outbreaks of CFS but no infection was detected, because the infection cleared like it does for Covid?

It's quite possible that in long COVID, the virus has not entirely gone. It may have disappeared from the blood or saliva, so you get a negative test, but may still be present in the brain and other organs, thereby causing ME/CFS symptoms.

It's the same for example for enterovirus ME/CFS: you don't typically find this virus in the blood of ME/CFS patients, but if you take tissue samples of the muscles or stomach lining, you will find enterovirus.
 
Messages
28
Location
Hungary
Has anyone made a direct link? Have we all caught a coronavirus of some sort in the past and got a version of long Covid? many of us think our CFS started when we got a virus, but others think they did not have a virus first. Were those people just asymptomatic? Wouldn’t this theory also explain why there are examples of outbreaks of CFS but no infection was detected, because the infection cleared like it does for Covid?
I don't think ME/CFS is caused by a single virus. It seems several of them have the potential to trigger it. Mine definitely started with Epstein-Barr (I was tested during the acute phase of the infection, so it is sure) and it seems to be a common trigger while certain other viruses seem to be capable of it too, even some strains of influenza. Not sure about the asymptomatic thing. I think studies about acute viral onset showed that initial illness severity correlates with later ME/CFS the most, but with this disease who really knows? :)
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
No ME isn't covid. ME predated coronavirus-19 by three decades. Chronic covid fatigue appears to be an autoimmune disease like lupus which shares has fatigue and neurocognitive impairment symptoms. They both affect similar systems but are different diseases. However, ME patients can have chronic covid which would worsen their symptoms.
 

Reading_Steiner

Senior Member
Messages
245
Don't think so, seen some people say that coronavirus was spreading in America months before the Wuhan outbreak, but hard to validate that. Coronavirus is just a generic type descriptor of many different viruses, if that's what you mean ? we know that EBV is a definite cause of me/cfs so unless EBV is a 'coronavirus' then I think not.

For me personally its made me reconsider whether the root cause could be an invisible experimental virus that was man made, and we are just blaming it on other events / pathogens that happen to exploit a weakness that was created by said unknown virus.

Covid is interesting, haven't figured it out yet, probably never will but I don't need to to understand the context.
I'd say its not wise to form scientific knowledge based off of covid i.e asymptomatic transmission etc.
 

geraldt52

Senior Member
Messages
602
I don't think ME/CFS is caused by a single virus. It seems several of them have the potential to trigger it... I think studies about acute viral onset showed that initial illness severity correlates with later ME/CFS...

There was an Australian study probably a decade or more ago that showed just that. As I recall they followed people hospitalized with severe viral infections and something like 10% went on to develop CFS. There were like half a dozen different viruses involved in the study, and I don't recall that any were a coronavirus. The correlation to CFS wasn't to a particular virus, but to the severity of the initial illness/infection. The current phenomenon of long Covid seems to fall mostly in line with that study.

I would think that its more appropriate to think of long Covid as a version of CFS, or ME, not the other way around.

What I find really interesting is that Anthony Fauci could never have given the slightest shit about CFS, and now he's all about studying long Covid. Thanks Fauci...
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
ME predated coronavirus-19 by three decades.
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....
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
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....

My understanding is that coronavirus never infected humans prior to 2019.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
My understanding is that coronavirus never infected humans prior to 2019.
That's not accurate.

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 .....
 

Jackb23

Senior Member
Messages
293
Location
Columbus, Ohio
I think the title could be accurate but I don’t necessarily agree with the description. Could long Covid be a form/manifestation of me/cfs? Absolutely. Does Covid explain all of me/cfs, including it genesis? I don’t think so.
 

Jackb23

Senior Member
Messages
293
Location
Columbus, Ohio
Could you explain your opinion?

Not being snarky or snidely challenging, genuinely interested. The similarities are hard to dismiss ....
Np. I think long Covid and me/cfs could be the same disease but if me/cfs is started solely by coronavirus then what would that say about the ~5% of people that don’t get over mono or the flu (and develop me/cfs)?
 
Messages
28
Location
Hungary
I'm not sure that computes. If ME is caused by corona virus infections, then whether you get over the infection or not, you've still had it, therefore .... ME/CFS ....

I don't know, I'm not really buying that. I mean before the mono I was very athletic, I did rather difficult, 1000-calorie workouts on a regular basis. I was famous for having the strongest immune system in the family and never being sick. (It is one of the family anecdotes that when we were kids my sister was always sick with something and I was almost never.) Then came the mono and boom, normal life was gone in a heartbeat and out of nowhere I was in the body of a 75-year-old.

Many other people in the mono forum said similar things. But I could also mention famous athletes like Swedish tennis player Robin Söderling who was among the very best in the world when suddenly mono and ME/CFS ended his sports career for good. Did he have ME/CFS before too, while beating all those other champions? :)

So if there was another trigger before the EBV trigger, there is unfortunately no physical sign of it in my life either. :)
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
So if there was another trigger before the EBV trigger, there is unfortunately no physical sign of it in my life either. :)
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. 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.
 

Jackb23

Senior Member
Messages
293
Location
Columbus, Ohio
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. 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.
Definitely an interesting theory. So Covid may be the underlying cause for some but could also be a cofactor for people who get me/cfs after acquiring an entirely different virus?

I guess who is to say at this point. Not much research into this specific question that verifies either POV.