• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New Study...Could past cases of CFS/ME be "Long Covid" triggered by endemic coronaviruses?

Wonkmonk

Senior Member
Messages
1,030
Location
Germany
Hi everyone.

I found this fascinating thread on Twitter on Long Covid. It's in German, but Twitter's translator (or Google) should work fine.


It discusses this study (no paywall): https://www.nature.com/articles/s41579-022-00846-2

I have almost all symptoms that are being described there in one form or another (sick since 2014, illess probably started in 2007).

Obviously, my CFS/ME isn't Long Covid as it started before Covid existed.

But I am wondering if cases of CFS/ME like mine could be "Long Covid" caused by one of the coronaviruses that were endemic before Covid like HCoV-229E, -NL63, -OC43, and -HKU1,

That would explain why CFS/ME starts after a viral illness for some patients including (probably) myself.

The study hypothesizes that the symptoms are caused by vestiges of the virus that, for some reason, the body is unable to clear. That would explain why treatments aimed at autoimmunity (e.g., steroids) have no effect for some patients and others like Rituximab make some patients worse because they further weaken the immune system.

I found it striking how this Twitter summary explains my symptoms so well. So maybe the endemic coronaviruses are worth looking to.
 

linusbert

Senior Member
Messages
1,206
Hi everyone.

I found this fascinating thread on Twitter on Long Covid. It's in German, but Twitter's translator (or Google) should work fine.


It discusses this study (no paywall): https://www.nature.com/articles/s41579-022-00846-2

I have almost all symptoms that are being described there in one form or another (sick since 2014, illess probably started in 2007).

Obviously, my CFS/ME isn't Long Covid as it started before Covid existed.

But I am wondering if cases of CFS/ME like mine could be "Long Covid" caused by one of the coronaviruses that were endemic before Covid like HCoV-229E, -NL63, -OC43, and -HKU1,

That would explain why CFS/ME starts after a viral illness for some patients including (probably) myself.

The study hypothesizes that the symptoms are caused by vestiges of the virus that, for some reason, the body is unable to clear. That would explain why treatments aimed at autoimmunity (e.g., steroids) have no effect for some patients and others like Rituximab make some patients worse because they further weaken the immune system.

I found it striking how this Twitter summary explains my symptoms so well. So maybe the endemic coronaviruses are worth looking to.

becoming sick after infection isnt a new thing, cases are known for decades if not centuries.
though covid as well its vaccine seam to have both a extra capability to deliver crippling effects to its hosts.
though, people getting really bad after epstein barr is also known.

its good to get more money for cfs "long covid" research through the covid hype/panic . but i actually do not believe cfs to be the cause of a special virus. i think for some other season the body fails to cope with the threat properly and then this thing persists. probably some metabolic switches gone hairwire or some body resources have been low/weared down due to too much stressors. for example lack of Vitamin D in mothers and patients is known to reduce capabilities to fight of infections, raising chances for autoimmune diseases and allergies dramatically.
i think the immune system just acts accordingly to the wounded state like a sick animal clawing at anything it perceives as a threat, until totally exhausted.
what i didnt know until recently is that the immune system not only "tags" molecules and proteins as threat with antibodies, but it also does "tag" molecules it should not perceive as threat. thats the mechanism how to slowly get out of allergy state by slowling tiltrating a allergen back to the body. so it makes those special antibodies. but makeing those antibodies is costing ressources.

i hope research finds the metabolic block ... or something to revert that switch. or a way to bring up exhausted ressources again.
but i fear this will become more of a long civilization problem we will read in 1000 years how humans poisened themselves (and nature) in their height of hubris.
 
Last edited:

BrightCandle

Senior Member
Messages
1,161
We already know a lot of viruses cause this condition, I would not be surprised to find out the two human endemic coronaviruses did too and maybe even rhinovirus does. At this point given what has been found about viruses sticking around in the body causing immune dysfunction and leading to lasting chronic conditions I assume its a property of every virus until its explicitly proved otherwise.
 

Wonkmonk

Senior Member
Messages
1,030
Location
Germany
i think for some other season the body fails to cope with the threat properly and then this thing persists.

That's what I think, too. These reasons probably include stress, nutrient deficiencies, sleep deprivation etc. My illness started when I had all three of them over several month. Massive amount of stress. Then a cold in the middle of the summer, so unlikely that it was the flu.
 

Wonkmonk

Senior Member
Messages
1,030
Location
Germany
, I would not be surprised to find out the two human endemic coronaviruses did too and maybe even rhinovirus does.

I would assume the old coronaviruses can do everything that Covid can do. Maybe not as strong of an effect or different effects, but if Covid can persist and cause havoc, the others probably can do (or at least some of them).
 

Hip

Senior Member
Messages
17,949
But I am wondering if cases of CFS/ME like mine could be "Long Covid" caused by one of the coronaviruses that were endemic before Covid like HCoV-229E, -NL63, -OC43, and -HKU1,

Most of the viruses with a known link to ME/CFS or similar chronic fatiguing illnesses appear to come from the same virus category, namely the positive-sense single-stranded RNA viruses (+ssRNA viruses).

These +ssRNA viruses are sometimes able to form chronic non-cytolytic infections. Non-cytolytic infections consist of pure self-replicating viral RNA that lives inside human cells.



All the following are +ssRNA viruses, and all cause fatiguing illnesses:

Enterovirus — known to cause non-cytolytic infections, and linked to ME/CFS
Dengue virus — known to cause non-cytolytic infections, and known to cause a chronic ME/CFS-like illness
Hepatitis C virus — known to cause non-cytolytic infections, and known to cause a chronic fatiguing illness

SARS-CoV-1 coronavirus — known to cause a chronic ME/CFS-like illness
SARS-CoV-2 coronavirus — known to cause a chronic ME/CFS-like illness (long COVID)

Ross River virus — linked to ME/CFS. Alphaviruses like Ross River known to cause non-cytolytic infections
West Nile Virus — linked to ME/CFS


It appears that some of these +ssRNA viruses are able to leave little bits of their RNA in the body after the acute infection is over, resulting in a persistent long-term presence in the body.


Though +ssRNA viruses are a very large group, and not all of them are able to form these chronic non-cytolytic infections.

For example, the enterovirus coxsackievirus B has been shown to cause non-cytolytic infections in the organs in multiple diseases (ME/CFS, type 1 diabetes, heart diseases, motor neuron disease, Crohn's disease).

Whereas the enterovirus coxsackievirus A although it can cause similar acute infections to coxsackievirus B, has not been linked to any chronic disease that I am aware of.

So CVB has what it takes to form chronic non-cytolytic infections, but CVA may not.



I expect the same may be true for coronaviruses: some may be able to form chronic non-cytolytic infections, and others not.

Apparently there are only 7 coronaviruses known to infect humans:
  • Human coronavirus 229E (HCoV-229E)
  • Human coronavirus NL63 (HCoV-NL63)
  • Human coronavirus OC43 (HCoV-OC43)
  • Human coronavirus HKU1 (HCoV-HKU1)
  • Middle East respiratory syndrome-related coronavirus (MERS-CoV)
  • Severe acute respiratory syndrome coronavirus (SARS-CoV-1)
  • Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)
Apparently HCoV-229E has been linked to Kawasaki disease, a childhood vasculitis that may result in aneurysms of the coronary arteries.

SARS-CoV-2 has also been linked to a Kawasaki-like disease in children.

So that is some evidence that HCoV-229E may form chronic infections.
 

Wonkmonk

Senior Member
Messages
1,030
Location
Germany
@Hip, thanks so much for your reply. This is so interesting.

I think one reason why no one appears to have looked more closely into the potential of the old coronaviruses to cause severe chronic illness is that they are deemed to be so harmless and innocuous. After all, 'it's just a cold.' Until it isn't,

I could also imagine that the type of CFS/ME I have, which might be associated with an old coronavirus (no proof or real evidence for that), is less severe than the other viruses you mentioned. I could live reasonably well, I had some symptoms, but didn't even suspect that I have a chronic disease until 2014 when I had a full thyroidectomy.

After thyroidectomy, for some weird reason, all hell broke loose once I started levothyroxine replacement therapy. I think it wasn't the surgery or stress or something. It's the levothyroxine. Because after thyroidectomy, there is one week or so where you're supposed to wait with starting levothyroxine (think they check your thyroid for traces of cancer or something). And I didn't feel too bad in that week. But once I started with levothyroxine, basically things went downhill very quickly. It was like someone had pushed a button.

I know this is wild speculation without evidence, but I could imagine that HCoV-229E only causes milder or moderate cases of CFS/ME in most people, and only leads to severe cases if people have a thyroid condition.

That would make it even harder (or maybe next to impossible) for medical practitioners or researchers to connect HCoV-229E to CFS-like illness.
 

Hip

Senior Member
Messages
17,949
I know this is wild speculation without evidence, but I could imagine that HCoV-229E only causes milder or moderate cases of CFS/ME in most people, and only leads to severe cases if people have a thyroid condition.

There is a low T3 syndrome that exists in about 1 in 6 ME/CFS patients. See this paper. I don't know if this has any bearing on your thyroid condition.

In this low T3 syndrome, levels of triiodothyronine (T3) are low, and levels of reverse T3 are high, even though levels of thyroid stimulating hormone (TSH) are normal.

Low T3 syndrome is a subclinical hypothyroidism, which may exacerbate ME/CFS symptoms, but may not be detected by regular thyroid hormone testing, which usually only checks TSH and thyroxine (T4).
 

sometexan84

Senior Member
Messages
1,239
Most of the viruses with a known link to ME/CFS or similar chronic fatiguing illnesses appear to come from the same virus category, namely the positive-sense single-stranded RNA viruses (+ssRNA viruses).

These +ssRNA viruses are sometimes able to form chronic non-cytolytic infections. Non-cytolytic infections consist of pure self-replicating viral RNA that lives inside human cells.



All the following are +ssRNA viruses, and all cause fatiguing illnesses:

Enterovirus — known to cause non-cytolytic infections, and linked to ME/CFS
Dengue virus — known to cause non-cytolytic infections, and known to cause a chronic ME/CFS-like illness
Hepatitis C virus — known to cause non-cytolytic infections, and known to cause a chronic fatiguing illness

SARS-CoV-1 coronavirus — known to cause a chronic ME/CFS-like illness
SARS-CoV-2 coronavirus — known to cause a chronic ME/CFS-like illness (long COVID)

Ross River virus — linked to ME/CFS. Alphaviruses like Ross River known to cause non-cytolytic infections
West Nile Virus — linked to ME/CFS


It appears that some of these +ssRNA viruses are able to leave little bits of their RNA in the body after the acute infection is over, resulting in a persistent long-term presence in the body.


Though +ssRNA viruses are a very large group, and not all of them are able to form these chronic non-cytolytic infections.

For example, the enterovirus coxsackievirus B has been shown to cause non-cytolytic infections in the organs in multiple diseases (ME/CFS, type 1 diabetes, heart diseases, motor neuron disease, Crohn's disease).

Whereas the enterovirus coxsackievirus A although it can cause similar acute infections to coxsackievirus B, has not been linked to any chronic disease that I am aware of.

So CVB has what it takes to form chronic non-cytolytic infections, but CVA may not.



I expect the same may be true for coronaviruses: some may be able to form chronic non-cytolytic infections, and others not.

Apparently there are only 7 coronaviruses known to infect humans:
  • Human coronavirus 229E (HCoV-229E)
  • Human coronavirus NL63 (HCoV-NL63)
  • Human coronavirus OC43 (HCoV-OC43)
  • Human coronavirus HKU1 (HCoV-HKU1)
  • Middle East respiratory syndrome-related coronavirus (MERS-CoV)
  • Severe acute respiratory syndrome coronavirus (SARS-CoV-1)
  • Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)
Apparently HCoV-229E has been linked to Kawasaki disease, a childhood vasculitis that may result in aneurysms of the coronary arteries.

SARS-CoV-2 has also been linked to a Kawasaki-like disease in children.

So that is some evidence that HCoV-229E may form chronic infections.
Here's a chart/graph from another thread showing these ME/CFS viruses grouped together in the same area. I'd highlighted those four.

1674012561222.png


But Dengue virus is also Flaviviridae.

Zika virus is another one, linked to chronic fatigue and chronic illness, which is another Flaviviridae.

Chikungunya virus is one too, it's in same family as Ross River, Togaviridae, and is linked to chronic fatigue.
 

Wonkmonk

Senior Member
Messages
1,030
Location
Germany
There is a low T3 syndrome that exists in about 1 in 6 ME/CFS patients. See this paper. I don't know if this has any bearing on your thyroid condition.

Indeed, I have heard of this as I've explored all sorts of things together with my family doctor and endocrinologist. What we found out is that I react extremely negatively if I add T3 (liothyronine) to my levothyroxine medication. There are combination products that contain both, but even mixing in a small amount makes me much worse. Therefore, we concluded that my problem is probably not a too low T3. My fT3 blood tests always come back in the middle or a bit below the middle of the normal range.

Here's a chart/graph from another thread showing these ME/CFS viruses grouped together in the same area. I'd highlighted those four.

Thanks for that chart...and there we have it: "Coronaviridae". Hopefully, with Long Covid now a thing, more people will look into this.

I think two things are special about my CFS/ME case:

(1) The extreme sensitivity to thyroid hormone. I have to get the right dose and can't even deviate 5 micrograms from it without having a major worsening. That's ridiculous, but that's the way it is. Tried to go just a bit higher or lower dozens of times, always the same.

(2) I am reacting strongly to certain foods, or more precisely, some combination of nutrients. I think the main culprit is some compound produced by bacteria that is produced if protein, fat (mainly monounsaturated) and some carbohydrate substrate are present. I have no clue what it is, but eating most of my meals fat-free has helped a lot. Interestingly, none of the usual suspects (gluten, FODMAPs, yeast, etc.) seem to make any difference.

I have no clue what is going on, but I suspect that a chronic intracellular infection may be reactivated by some bacterial fermentation product and deviations of the cellular balance of thyroid hormones.

I have seen studies that Herpes Zoster is more likely when thyroid hormone is low, and that other herpes viruses replicate better or worse depending on the presence of thyroid hormone. There also appears to be evidence that butyrates (which are produced by bacteria) reactivate Epstein Barr Virus.

I no longer think my problem is caused by a herpes virus, but I suspect other viruses can be reactivated in this way, too and maybe something similar is going on.

Though I am still in quite a bad shape, I have improved tremendously by going fat free and managing the thyroid very rigorously. Not being in pain almost the entire day is really something.
 
Back