Do postviral syndromes in children have a tendency to appear with a delay?

[Hoopoe]

What’s interesting, is that in some of the children, it really appears as a direct continuation of severe illness but in very many of the children, there is a severe illness, followed by a lull of several months and only then do the symptoms of long COVID begin.

https://www.haaretz.com/israel-news...ontend-with-long-covid-in-children-1.10280661

Has anything similar been reported in ME/CFS?

 

[Art Vandelay]

What’s interesting, is that in some of the children, it really appears as a direct continuation of severe illness but in very many of the children, there is a severe illness, followed by a lull of several months and only then do the symptoms of long COVID begin.

Many adults with Long Covid are also reporting that their LC began as much as 5-6 months after the initial covid infection (see r/covidlonghaulers on reddit for example).

In my view this might explain why some people with ME/CFS are unable to link an infection to the beginning of their illness. The media spotlight on long haul covid and the ability to swap experiences with many people in the same boat online has meant that many long haulers have been able to draw the connection.


ETA; some are also reporting that their long haul began after extremely mild covid infections.

Researchers could learn a lot about post-viral illness by simply monitoring long hauler forums. Instead, they're too busy sending out questionnaires asking about anxiety and fatigue.

 

[Hoopoe]

I had no infection immediately before what was probably my first PEM episode. I had an infection about 2 years before that and in the time between that infection and the first episode, ocasionally some unusual symptoms in the morning which seemed consistent with sleep disruption.

 

[Mithriel]

When I first learnt about ME, mild, and even subclinical infection, was seen as common.

It would make a certain sense. If the immune system is aggressively fighting an infection most of the viruses will be eliminated but just a few can seek past and get dep into the body where they can evade the immune cells.

One treatment for cancer before they used radiation for everyone was to give the patients an infection (malaria?) which stimulated the immune system so it noticed the cancer cells in passing and eliminated them too. Some doctors have spoke about using something like that again to cure small aggressive cancers but I do not know if it went anywhere.

It is also possible that some covid particles are missed but they are too few to cause problems but a gradual increase over a few months can lead to enough being present to cause symptoms.

I was never right after an initial Coxsackie B infection with strange random things and sudden energy loss if I did something out of the ordinary but it took a year or more before I realised I had a chronic disease.

 

[Snow Leopard]

Many adults with Long Covid are also reporting that their LC began as much as 5-6 months after the initial covid infection (see r/covidlonghaulers on reddit for example).

In my view this might explain why some people with ME/CFS are unable to link an infection to the beginning of their illness. The media spotlight on long haul covid and the ability to swap experiences with many people in the same boat online has meant that many long haulers have been able to draw the connection.

This broadly overlaps with the relapse-remitting type onset of ME/CFS, which is a lot more common than regularly reported because patients are usually forced to choose between 'sudden onset' and 'slow onset', neither of which apply to relapse-remitting onset.

 

[Forbin]

I think this could be a very important question. The delay between an infection and onset in some people might suggest that some opaque process has begun. Some random "malfunction" has occurred and that malfunction is propagating until it reaches a point where its interference with normal function becomes manifest... maybe.

Prior to the onset of ME, I came down with a severe upper respiratory infection and incredibly bad sore throat. I was away from work for a week and didn't feel reasonably back to normal until Day 11.

After that, I was fine. I went to movies, road my bike and hiked up a mountain to a waterfall in 90 degree heat. I was well rested on day 26 when, around sundown, I suddenly felt so unsteady on my feet that I thought I was going to pass out.

At the time I made no connection with this event and the infection which had begun nearly a month earlier. Then my bloodwork showed that my immune system was still mildly elevated and my doctor assumed that this was just a post-recovery "hiccup" - but I knew that something was off - and "that something" was slowly getting worse. Rest did not slow its progress. Exercise did not slow its progress. There wasn't even a name for it in the U.S.


I've thought about doing a poll to see how common a delay between infection and onset is among members - and the length of the delay.

There are, of course, difficulties - like how does one know if one's ME was triggered by the most recent infection or by something deeper in the past - or by an infection at all?

 

[Ravn]

What’s interesting, is that in some of the

children, it really appears as a direct continuation of severe illness but in very many of the children, there is a severe illness, followed by a lull of several months and only then do the symptoms of long COVID begin.

https://www.haaretz.com/israel-news...ontend-with-long-covid-in-children-1.10280661

Has anything similar been reported in ME/CFS?

You know what's infuriating? That on the one hand it is very important that people with long Covid report their onset accurately or they, too, end up with a poorly fitting story imposed on them, just like us with our limited choice of sudden versus gradual onset mentioned by Snow Leopard.

On the other hand this honest reporting is guaranteed to be twisted into a psychogenic argument by the usual suspects.

I can't recall if there was a delay between my original virus and my first ME symptoms, nor between my second virus and my first big relapse, too long ago. But I have a good timeline on the last one. It went: viral infection, recovery over 1 week back to my pre-virus near-remission state, stayed there for 2 weeks being as active as usual and walking many kilometres without even a hint of a problem until, out of the blue, I relapsed overnight.

So just a few weeks rather than months but definitely not the 'went to bed with a virus and never got up again' scenario. Also notable, I felt well during those two weeks before the relapse, I didn't push myself and didn't ignore any symptoms. I was listening to my body and it didn't tell me to slow down, right until the moment it did.

Would resting despite feeling well during those 2 weeks have prevented the relapse? Or does a virus set something in motion that, if you're predisposed to ME, is going to progress to ME or cause a relapse no matter what you do?

ETA: no idea what's going wrong with the quote, the system keeps inserting extra breaks no matter how many time I delete them

 

[Florence]

I'm afraid I haven't been able to read all of the above posts so forgive me if anything I write is repetitive or irrelevant.

I wanted to note the mix of immediate/delayed, slow/fast in my own onset experience (2001-2003) and then exacerbation from moderate to severe (2020-2021). All this bearing in mind what Forbin says....

There are, of course, difficulties - like how does one know if one's ME was triggered by the most proximate infection or by something deeper in the past - or by an infection at all?

On balance I would say I had sudden onset ME in August 2003 after a severe respiratory infection from which I never fully recovered and after which my ME symptoms set in in earnest. It felt as if I had 'fallen off a cliff' medically speaking and I have never been less than 'moderate' in my ME symptoms since. However for two years prior to that I noted that I was 'a bit rundown'. I experienced highly uncharacteristic insomnia and frequent viral infections, from which I recovered on each occasion. it's notable that after spinal surgery for a slipped disc in 1996 I developed a 'vertigo virus' for the first time in my life, from which I recovered. I never suffered from this again until it became a common feature of my ME symptoms after 2003.

In Feb/March 2020 my GP thinks I probably had Covid. It felt unlike any other viral infection I've experienced. It was highly unpleasant and I was slow to recover, but I did get back to my 'ME normal' after some weeks. I appeared to have a milder, shorter relapse/reinfection with similar symptoms in October 2021. Again I recovered. Then in December 2021 (a few days after visiting hospital for an MRI scan) I had a repeat of the February/March experience. As in 2003 I never fully recovered from this bout of illness and have been 'severe' in my ME symptoms ever since.

All this leads me to think that we cannot make clear distinctions between sudden and gradual onset or immediate and delayed response to viral infection.

 

[Mithriel]

I am not sure how useful sudden and gradual onsets are. Every disease has a sudden origin like a single cell replicates badly and becomes cancerous but the point is we notice the damage suddenly or gradually.

Medical science does not understand the origins of most diseases at the lowest level of action. It is not necessary, we do not need to plot every individual virus to know we have an infection and there is complex interplay of circumstances anyway so it may never be possible to track.

The problem with all this is that lack of science means we have ideologies instead. The BPS believe that the precipitating event, virus, mutation, whatever is unimportant compared to the perpetuating issues such as deconditioning and a learned fear of exercise.

Biomedical theories do not bring in the unnecessary complications of psychology but are not good at subtle diseases like ME, find them difficult so ignore them.

Sudden and gradual onset ME must both have a point where it starts but how long it takes to be noticed is the difference.

If ME symptoms are caused by a damaged aerobic cellular respiration, how it affects you will depend on how many cells are involved. Gradual onset may simply be because the cellular damage is slower to spread in some people. It would explain why so many are not quite right before their ME becomes obvious. Another illness might enable the cellular damage to speed up.

It is possible that ME is caused by a genetic tendency that becomes overt because of an infection or trauma. That is what is believed to happen with coeliac disease and type 1 diabetes.

Maybe we will soon get some answers. We have waited long enough but longcovid could have so many people that it will be like AIDS research which was intensive when the scale of the epidemic became apparent.