No viral onset = viral onset?

[Martin aka paused||M.E.]

I can’t remember any infection... when it started in 2013 there was none and when I became moderate in 2017 either.
But there are viruses that don’t have to cause symptoms. Sometimes an infection is asymptomatic. So maybe every ME is with a viral onset. Just a thought.
Martin

 

[Hipsman]

I also don't remember any infection when it started in 2016, in fact I haven't noticed any acute infection the whole year...

 

[nerd]

That's my assumption as well. Most infections are asymptomatic. Considering this, symptomatic viral onset is actually overrepresented in CFS/ME. Even when we only look at EBV, symptomatic IM is overrepresented.

 

[godlovesatrier]

My infectioned had cleared but my immune system was weakened and I reckon that's what snapped something internally to fell me with ME. I did get close to remission once on Siberian ginseng but after going into hospital for some minor surgery everything went to shit.

Post hospital visit I've never got back to where I was. The reason is a total mystery

 

[jpcv]

I don´t remember any infection either, I remember I had symptoms like we usualy have in the beggining of an infection like fatigue, general malaise.
I never had fever or another symptom suggestive of infection like diahrea, cough, shortness of breath.
All I know is that a few days after my first symptoms I ended up in bed with diffuse pain and extreme fatigue and, since that day, life has never been the same again.

 

[Hip]

But there are viruses that don’t have to cause symptoms. Sometimes an infection is asymptomatic. So maybe every ME is with a viral onset. Just a thought.

The same virus can cause severe acute symptoms in one person, but be asymptomatic in the next person. We see that with coronavirus.

Another example is the historical poliovirus outbreaks: only a very small percentage of people would have an acute infection severe enough to kill them (via breathing muscle paralysis) if they were not placed in an iron lung machine; and about 25% would have minor symptoms like a sore throat and fever; but 70% catching poliovirus showed no symptoms at all. Ref: here.

 

[Wishful]

Considering this, symptomatic viral onset is actually overrepresented in CFS/ME.

It may partly be due to looking for a cause. I rarely got a viral infection (or at least noticed symptoms), but perhaps the typical PWME did get a noticeable viral infection several times a year, and when they developed ME, well, that was obviously the cause...

 

[xebex]

My onset was triggered by a vaccine however before I got sick I used to get a nasty chest infection/cold (I never had antibiotics or anything for it) every year since I was a child. However once the ME hit no more chest infections or any other illnesses for that matter. I don’t remember ever having had EBV even though I have tested positive for it, I have also tested positive for CMV with no recollection of having had it.

Since Covid I am wondering if actually a combination of the normal corona viruses plus one of the herpes viruses are what triggers/causes this.

 

[Wishful]

Since Covid I am wondering if actually a combination of the normal corona viruses plus one of the herpes viruses are what triggers/causes this.

I suppose it's at least possible that ME is triggered by a combination of viral infections that may be asymptomatic, and that any other factors we assume are triggers are just coincidences.

 

[Martin aka paused||M.E.]

Older thread about my own theory for none-viral onsets of ME but supported by Cort's new article about the Enterovirus Hanson study:

It’s also likely that some people with ME/CFS who don’t believe they had an infectious onset actually did. We know this because one of the (hopefully) many insights to come from the COVID-19 pandemic is that it’s now clear that even people with very mild or even asymptomatic coronavirus infections can still come down with long COVID. Because enteroviruses can produce mild or even asymptomatic infections, they could have triggered ME/CFS in some people who thought they had a gradual, non-infectious onset.

https://www.healthrising.org/blog/2021/07/27/chronic-fatigue-enteroviruses-give-up-too-early/

 

[godlovesatrier]

Yep. That's why mild ME is still important. Because it doesn't mean you don't have ME just because your mild. It's just a different stage of the disease and who knows how much time you've got until you end up moderate or severe.

 

[Wishful]

It's just a different stage of the disease and who knows how much time you've got until you end up moderate or severe.

I don't believe that ME has definite stages. I've had it for 20 years now, and it's always been mild. It's varied a bit over that time, with different sensitivities arising or going away. I don't expect it to reach some date where it has to become moderate and then severe. I think changes in severity are due to various factors, depending on the individual.

 

[bensmith]

I think my covid was asymptotic and went straight to cfs. Could have been the flu from a couple months before, but i strongly suspect covid.

 

[sometexan84]

Older thread about my own theory for none-viral onsets of ME but supported by Cort's new article about the Enterovirus Hanson study:

Because enteroviruses can produce mild or even asymptomatic infections, they could have triggered ME/CFS in some people who thought they had a gradual, non-infectious onset.

https://www.healthrising.org/blog/2021/07/27/chronic-fatigue-enteroviruses-give-up-too-early/

Thank you! I had not yet seen this article!

So, on that note of gradual onset, and infectious onset... I think this sentence from a Dr. Chia case study is very relevant and interesting...

https://www.evmedresearch.com/case-study-3.html

The fatigue did not increase until later when he acquired another unique strain of enterovirus.

So, there was some fatigue and enterovirus, but later more fatigue w/ an additional enterovirus. This type of sequence could def lead one to think their ME/CFS was "gradual", which could potentially lead to an assumption of a non-infectious onset.

Anyway, I'd never considered a scenario like that.

 

[Mouse girl]

Looking back, I have from what I've read and learned from ME specialists is that mine is kinda a classic case of ME/CFS. Mild symptoms started when I was a teen but I had no idea, I was just sick and run down all the time but I still lived a normal life and had no brain fog. As a young adult, I remember that i had more symptoms but came with more activity and exercise but would improve as a became less busy and stressed. Then the thing that set off the full blown ME/CFS was mold exposure.

 

[Martin aka paused||M.E.]

Thank you! I had not yet seen this article!

So, on that note of gradual onset, and infectious onset... I think this sentence from a Dr. Chia case study is very relevant and interesting...

https://www.evmedresearch.com/case-study-3.html


So, there was some fatigue and enterovirus, but later more fatigue w/ an additional enterovirus. This type of sequence could def lead one to think their ME/CFS was "gradual", which could potentially lead to an assumption of a non-infectious onset.

Anyway, I'd never considered a scenario like that.

Yes and it would explain my own trajectory! I think I have two, but the lab only tested a few.

 

[Martin aka paused||M.E.]

Looking back, I have from what I've read and learned from ME specialists is that mine is kinda a classic case of ME/CFS. Mild symptoms started when I was a teen but I had no idea, I was just sick and run down all the time but I still lived a normal life and had no brain fog. As a young adult, I remember that i had more symptoms but came with more activity and exercise but would improve as a became less busy and stressed. Then the thing that set off the full blown ME/CFS was mold exposure.

That doesn't mean that you don't have an entero infection

 

[Judee]

I don't believe that ME has definite stages. I've had it for 20 years now, and it's always been mild.

I think for most PwME though it does progress in a downward trajectory over time. This poll looks a little bit like it indicates that. https://forums.phoenixrising.me/threads/me-activity-level-poll.82476/#post-2329210

 

[Mouse girl]

When I saw Dr Bell speak some years ago, he said he found that most people plateau, with ups and downs, of course. But, some get better and some get worse over time. I knew a very mild friend for many years but fell out of touch with him, last I heard, he was still working full time He's been sick for decades. Perhaps he doesn't fit the ME diagnoses. People seem to have different opinions of it. He never had the orthostatic issues or cognitive issues, so I thought perhaps he had another tricky chronic thing. But, I'm no doctor.

 

[Wishful]

I think for most PwME though it does progress in a downward trajectory over time.

My guess is that the longer the person has ME, the more chances of encountering new triggers for worsening it, and also the more likely a reduction in health occurs, due to lack of activity and aging. That's different from a disease that progresses along a repeatable pathway. If a virus always multiplied only in nasal tissue until it reached x concentration, and then spread to the lungs, that would be a staged disease. I don't see any signs that ME is staged.