Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

Could you explain? I think if there was evidence (or negative evidence) about persistence of specifically the virus that preceded ME, it would be pretty meaningful in showing how it relates to that initial infection.

 

If the diagnostic is questionable - and far too many actually are - its significance would be limited.

This also holds true for reactivation metrics.

 

I think a + signal in DecodeME [GWAS] would strengthen the case re immune response to a pathogen e.g. in Alzheimers [GWAS] immune genes turned up including one linked to gingivitis*.
From memory Ian Lipkin did a large study looking for pathogens [looking for fragments of the pathogens genetic material] and found nothing.

*e.g. - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8032519/

 

I recall it well. I was not impressed then either.

 

I've had M.E for 33yrs and I'm of the sub-group that experiences viral reactivations. I come down with one every few years and it eventually resolves on its own within a few months and I'm back to my baseline. But since menopause, the low estrogen levels has left me susceptible, my immune system is unable to resolve this vestibular virus I got 4 yrs ago. The virus has taken on a life of it's own and won't go away.

I am getting the x2 shingles vaccines as soon as I turn 65.

 

I believe this may apply to me as well. Not clear if it's viral, though.

Overall though, in terms of persistence, the more I dig into immune tolerance and it's role in viral reactivation, the more I suspect it may prove relevant.

 

I think Jonathan's point (above) is interesting i.e. it could be something "normal" just that you're reacting to it - recent award to Ruth Ley comes to mind (here* & there's a thread on Science 4 ME) - Jonathan thought it was a good study to fund.
I personally don't think the (true) pathogen thing is going anywhere - recalling Ron Davis - technology's moved on to the point that you'd identify AIDS in a few hours - extract the DNA (from blood), sequence it --- you'd know it's nearest relatives. I think RNA's (viruses) are bit trickier (compared to DNA) - correct?
My vague recollection of the Lipkin study was --- standard search --- finds nothing --- the methodology was fairly standard - correct?



Ruth Ley receives Advanced Grant from the European Research Council
Max Planck Institute Director receives funding for Silent Flagellin in Chronic Inflammatory and Auto-immune Disease (SilentFlame)
https://www.bio.mpg.de/327802/ruth-ley-receives-erc-advanced-grant-2024

 

Not really. Changes in numbers of cells in the blood and such things are of no significance in the short term. It is a bit like saying that the lack of traffic in the middle of the day indicate people are not working - it is an irrelevance. Cells move in different ways after a stimulus.

I had never heard of this theory and it sounds like pseudoscience from sports medicine people.

 

It could be a lot of things.

My vague recollection is he found NO evidence of ANY pathogen - virus, bacteria, or parasite - in ANY OF HIS COHORT (if I recall correctly, and I may not be). Given that his cohort was in large part from the NY metro (if I recall correctly), that would be quite remarkable.

No matter. What does matter is where he looked and what he looked for, and the pathogens may be sequestered, or not on his list, or the tests may not have been up to the task.

I would certainly not discount the persistence theory - nor the reactivated virus theory - yet.

 

Can someone link to the Lipkin study? I can't find it.

 

I'm pretty sure we discussed it here. Sorry, my brain can't work the Search function.

 

Even if viral flare-up is true, that doesn't quite explain the precise/binary nature of PEM. Viral flare-ups, being organic, are more likely to have an s-curve shape. PEM, on the other hand, is more like a square wave that comes after a much more precise delay and hits you like a brick at once.

 

Is it that much different from how someone feels when they get an acute infection? I think it can be a few days after an initial exposure that you're fine, then on the third or fourth day you wake up and can barely move.

I could be wrong, I don't know if that's how people normally experience it.

Edit: It would be very cool to see data on how long it took people to get sick after viral exposures before ME, and how delayed their PEM is, and see if the time lengths correlate. No idea how you'd get good data for the first part though.

Edit 2: Time.com: I Was Exposed to COVID-19. How Long Will It Take for Symptoms to Start?

 

Could still be a downstream effect of a virus, just not a flare per se. Acquired channelopathies come to mind (just as an example).

 

I think it is. When I was in the deep end, I used to get knocked out as 2 PM, almost exactly 24 hours after the walk, rolled in. It's no longer that precise or binary now that I'm out of the deep end. But the fact that it once did for me, and it does for some other patients, runs counter to the nature of viral flareup. Even the most acute viral infection would progress over the hours rather than hit you at once.

 

If this delayed onset period to PEM can vary with different severities of ME, maybe severe ME means the defenses are even further weakened, to where the body has more trouble holding off whatever is happening in that delayed symptom rise period.

Could be there are also some people without ME that just start feeling sick like a light switch a few days after infection.

 

It could, if viral infection symptoms can be turned on like a switch.

I'm not aware of any such cases. Symptoms like fatigue and fever should be proportionate to the viral load. Maybe there are symptoms that has trigger threshold, but fatigue is not one of them, I don't think.

 

Not instant, but this person on Reddit says after testing positive for COVID 1.5 days earlier, they went from a little sleepy to very sick in one hour, though no mention of fatigue as one of the after symptoms.

This person got intense fatigue and fever within an hour, after three days of muscle aches.

 

I think I had PVFS for at least 5-6yrs before I developed delayed PEM as I experience it now. In the second year I had a PEMish experience after exercise that only involved my leg muscles, very sore/hot/burning muscles for six months after working out on a stair master for 40 minutes. If I worked out on a stair master today for 40 minutes, I would most likely end up in the ER.

 

I had all the PCR/DNA lymphocyte tests for viruses 11 years into the illness when I felt 'viral' and nothing showed up.