We can get Peginterferon Lambda now!!!

sometexan84

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HERV is present in sick people all the time. All this time, that finding has never amounted to anything. Maybe it it activates with inflammation or something, who knows.

The study could have shown enterovirus but it didnt
HERV is a really weird one.


The study could have shown enterovirus but it didnt
Not sure what you mean. Didn't see any mention of Entero.
 

sometexan84

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SomeTexan84, can an enterovirus infection you talk about cause pain-related syndromes (at least theoretically)? Thank you.
I'm sorry, looks like this never got a response.

Yes, 100%. The obvious is stomach and abdominal pain, which few would argue w/. But persistent RNA viral infections in the intestinal epithelium can also lead to headaches (and neuroinflammation) via microbiota-gut-brain axis, as well as headaches from the intestinal permeability it causes... so here you have not only the virus itself leaking out into the bloodstream, but also bacteria from the gut (bacterial translocation).

The "leaky gut" that we're talking about here can lead to many pain symptoms.

You also have the autonomic dysfunction and Small Fiber Neuropathy seen in ME/CFS, which is strongly linked to Enterovirus. Pain symptoms here can manifest in feet, all joints, lots of places. And is also strongly connected to inflammation, which again can be systemically caused by even a localized EV infection.
 

Learner1

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Mine was triggered by EBV But I never had high antibodies to it.
I only had one high EBV antibody, interpreted as past infection. However, my specialist finally tested EBV which was positive. The thinking is my immune system was not competently making antibodies. The specialist said he'd never seen anyone in 30 years have that combo of test results but that I definitely have it. PCr I won't be positive 109% if the time, but it's worth testing a few times. Could be another herpes virus though, like CMV or HHV6. Or an atypical pneumonia. Or enteroviruses...
No more EBV talk. Doesn't explain everything, EBV is not a contender.
I didn't say it explained everything. But I have seen an awfully lot of people after a lot of teeth gnashing and foot dragging by doctors and up with a diagnosis of EBV that finally gets treated and they get helped. Its definitely a contender for at least some, likely the ones who may not have the enterovirus problem.

I just don't think your enterovirus explanation is going to fix everybody either. I think we each have a collection of different things and different combinations, so that it is a complex and vexing mess to try to untangle for each of us. Any one size fits all approach is doomed to fail. It may help a few, but it's unlikely it's going to solve everything even for those few. I guess we'll see in 4 months.
The next stressor? You mean, how do we cure your ME/CFS when you get it again. Idk. Odd question.
It is not an odd question at all. I had cancer treatment trigger reactivation of these viruses that had been sleeping for 30 years. I beat them back and 3 years later, I go get my covid vaccines, and end up with one of them reactivating again. It just takes one more stressor to be the straw that breaks the camel's back, and there we are again.
Also, you MAY have a primary immunodeficiency.
I'm not so sure about that. I've had my WES and mtDNA gone through at 4 institutions and no one has found anything suggesting it's genetic.

Looking at the outlier data points can inform the process. I was diagnosed with ME/CFS by a top expert and many of my labs are in line with what the major researchers have found.

I do know my immune system is pretty dysfunctional and probably is an acquired dysfunction. I've seen several other patients here with immunodeficiencies as well, so I'm skeptical that this lambda stuff us going to magically fix this, just like I'm skeptical that all those bacteria killed off in the microbiome by antibiotics and other drugs will magically fly in from somewhere to repopulate the gut - maybe with an FMT at some point, but not by lambda alone.
However, I disagree that it is enterovirus causing this. I mean, it could, in theory, but so could any number of things.
definitely agree...
but i am at the point where I dont think the triggering infection is the on-going problem. For most, I dont even think it matters. i came across some papers saying that some viruses, such as EBV, norovirus, and some others, can damage the neuromodulatory cells in the gut. I think maybe something like this is happening. The result is that digestion becomes altered. There is delay in gastric emptying. Then there is bacterial overgrowth. And then the rest follows. That is not how it is for everyone (Jen Brea for example) but ...I suspect it might be for many. I have come to believe that a number of things can somehow shift the microbiome. Severe Trauma, Vaccines, Infections, etc. I am just speculating about the neuromodulatory cells but maybe that is one way
The virus is also trigger infections, they deplete nutrients like vitamin C and D, and then there's a cascade of other symptoms and problems that develop, including adrenal insufficiency, low T3 thyroid syndrome, had a bunch of autoimmune issues. Fixing the microbiome is definitely a good step, beating back any viruses that are sitting there causing mischief is also good, but all the other collateral damage is unlikely to be fixed in one fell swoop.
Yes, 100%. The obvious is stomach and abdominal pain, which few would argue w/. But persistent RNA viral infections in the intestinal epithelium can also lead to headaches (and neuroinflammation) via microbiota-gut-brain axis, as well as headaches from the intestinal permeability it causes... so here you have not only the virus itself leaking out into the bloodstream, but also bacteria from the gut (bacterial translocation).

The "leaky gut" that we're talking about here can lead to many pain symptoms.

You also have the autonomic dysfunction and Small Fiber Neuropathy seen in ME/CFS, which is strongly linked to Enterovirus. Pain symptoms here can manifest in feet, all joints, lots of places. And is also strongly connected to inflammation, which again can be systemically caused by even a localized EV infection.
again, though it is very convenient to have one cause for this problem, the reality is that there are multiple causes. Some people have One or more types of neurological antibodies causing symptoms, other people, like those who've been on antibiotics which have killed off oxalate degrading bacteria, have oxalaria which creates sharp little crystals that get deposited throughout tissues and joints and cause pain, And there are a plethora of other possible issues. It's definitely worth pursuing the enterovirus theory to see if it improves things, but for many of us, there are multiple things going on, and until all the clues are followed, it's difficult to really make progress. I've seen some really great treatments fail when done at the wrong time or when done in isolation, where they can be successful when done at the right time and in the right sequence.
 
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Learner1

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Why are you against us doing this experiment? Surely it's only a good thing.
I'm not against your experiment. I'm just a bit skeptical of any one size fits all theory fixing all of us.

Many people have limited resources and choosing one experiment over others may mean they can't do other things. Additionally, through my own journey, I've seen that there is no going backwards after trying certain things so it is useful to understand all the pros and cons and whether it's appropriate to try something.

I do see that lambda is being used for COVID:

https://www.nature.com/articles/s41467-021-22177-1

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Daffodil

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i meant that the demeirleir study of tissue did not show enterovirus...they took tissue from the gut. if enterovirus was persisting in the epithelium, why did it not show up?
 
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i meant that the demeirleir study of tissue did not show enterovirus...they took tissue from the gut. if enterovirus was persisting in the epithelium, why did it not show up?
I think in in this year IACFS/ME, if that is the name, Dr Chia showed in his slides several proof of Intestinal Epithelium infection with Enteroviruses. Tho its not new, its been known before. Also its not restricted to Enteroviruses but also other viruses can do that.

But that comes from his previous studies, will see if I can find any links to support this.
 

sometexan84

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i meant that the demeirleir study of tissue did not show enterovirus...they took tissue from the gut. if enterovirus was persisting in the epithelium, why did it not show up?
It would actually be awesome if it were that simple! The fact that it's difficult to detect has been a major issue over the decades.

They have to run specific tests for specific RNA and viral proteins. Like VP1

In fact, some of the Enterovirus studies couldn't find EV in ME/CFS biopsies because they were using 5 prime region (5' UTR) in order to detect EV viral presence. But it turns out, the mutated, persistent Enterovirus we're looking for has a 5'UTR deletion... it's no longer there. So in studies like this, they were completely flawed. But nonetheless, the negative findings in studies like that sort of derailed future studies a bit.
 
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Daffodil

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OK but I can say that about any pathogen on the planet. You can say ABC wasnt found because the tests were not sophisticated enough, or it was the wrong area to biopsy .....the antibodies arent in the blood because the body isnt making antibodies....or ABC is in the CNS, etc etc.......the fact is, enterovirus targeted treatments help some people because it is a reactivated virus in some people. Or it triggered the shift in the microbiome. I just don't think treating it will get the microbiome back in shape unless perhaps if it is done very very early.

Hell, there are a few who probably still think XMRV is the culprit!

I say, whatever is causing inflammation in the epithelium, crowd it out with "shitloads" of new poop. Preferably poop with a high bifido count. Do it for an extended period of time.
 

sometexan84

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OK but I can say that about any pathogen on the planet.
Actually, the persistent, low replicating mutated enterovirus infection, the non-cytolytic one... has proven to be far more difficult to detect than many pathogens.

This major issue in pathogen detection has not been a huge concern for other pathogen studies in ME/CFS (EBV, HHV-6, bacterial infections, HSV, VZV).

That said, all the RNA viruses similar to Enterovirus actually do have similar detection issues. Like SARS-CoV-2 in Long Covid, they are still having trouble accurately detecting the persistent infection in the gut, as they are still trying to pinpoint whether to look for RNA, or Spike protein, or some other protein. The EV ME/CFS studies had to go through the same trial and error bit.

The recent article here talks about the challenges w/ the EV detection in ME/CFS, and is the first paper to cover all the historical studies, detailing inadequate methods used, goes over the historical ME/CFS outbreaks, etc. I highly recommend giving this article a read!

The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Critical Review

This is a very important article for ME/CFS. There's a reason it has a 95% Views Rank.

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sometexan84

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the fact is, enterovirus targeted treatments help some people because it is a reactivated virus in some people
Enterovirus is actually active primary infection. It does not reactivate.

Reactivated viruses are "latent", where they can exist in a dormant state, and later become re-activated. This would be like the herpesviruses, like EBV and HSV.

EV actually can't do this. In ME/CFS, the acute EV infection mutates to a persistent defunct version, but stays active the whole time... just very LOW replication.

Also, the reactivation is not to be confused w/ the reinfection you see in SARS-CoV-2.
 

Daffodil

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OK....so change my wording from reactivating to smouldering. I still am not convinced.....because I got ME/CFS after EBV. My primary infection was respiratory.

Are you saying that I probably had enterovirus all along at low levels, and then after the EBV, it somehow started to get out of control? Despite my always testing non reactive to enterovirus antibodies even?
 

Daffodil

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LOL

@sometexan84 its a respiratory virus?!?? but i thought it causes diarrhea and stuff....?

well, then who knows what my primary infection was. the test said ebv but i read people with other acute infections like HIV will sometimes test positive to ebv monospot during primary infection

but mine was the classic...huge swollen lymph nodes, sleeping a lot, 104 fever etc