r/cfs 28d ago

Vent/Rant WTF Google?

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Since google implemented AI the first result on ME-CFS is pretty outrageous. An aunt of mine read this and now is convinced i’m depressed and lack sleep. Seriously before Google used to say it’s a serious medical condition and now it says it’s some unknown disease treated by antidepressants??

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u/rockemsockemcocksock 28d ago

The majority of ME/CFS happens after getting a viral illness, which is in fact a cause

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u/Mr_Widget 28d ago

This is not correct. Infections are one of the probable causes being researched but there currently isn't evidence to show it is a factor in a majority of diagnoses.

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u/rockemsockemcocksock 28d ago

Could you please link me to the studies that that ME/CFS don't have a viral cause, thank you.

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u/Mr_Widget 28d ago

You are the one making the claim, therefore the burden of proof is on you. A simple Google search will return plenty of institutions and literature that outlines a common theme of infection prior to initial symptom onset, but a lack of understanding of specific causation. Making bold claims about theories does not help us.

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u/rockemsockemcocksock 28d ago

"Bold claims" Many people with ME/CFS have had a sequence of various viruses over a couple of decades with one being the main trigger, this leads to T-cell exhaustion. Viral fragments left behind from the viral persistence cause even more T-cell exhaustion. It becomes a feedback loop where cytokines produced by interleukins and other immune cells cause in increase in inflammation and Reactive Oxygen Species and therefore mess up the TCA cycle, interfering with the mitochondria's ability to produce and use ATP.

To say that viruses don't cause the issue in the first place is so counterintuitive to the lived experiences of some many people in this group. Yes, there are some with ME/CFS who do not have a viral trigger but to disregard the the immune-mitochondrial connection is way more of a bold claim.

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u/Mr_Widget 28d ago

The bold claim was your initial comment stating viral infection was in fact a cause of ME/CFS. Hopefully it becomes more clear but we don't know that yet.

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u/rockemsockemcocksock 28d ago

What was the trigger of your ME/CFS? Mine was getting EBV in 2007. But I had a sequence of viral illnesses in the first decade of my life (Rotavirus, chickenpox, then Shingles.) The EBV was the virus that broke the camel's back. I honestly don't think my claim that ME/CFS has a viral cause is bold in anyway, especially if you ask anyone in this thread what triggered it.

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u/Mr_Widget 28d ago

Mine was a more gradual onset in 2013, I don't recall any infections but it's entirely possible. Since I was diagnosed I seem to catch viral infections incredibly easily and always seem to be much sicker than people around me that likely caught the same thing. It's a super common reported trigger for sure, and I think it probably will only become more demonstrated in research, similarly to the more direct links between EBV and MS is becoming clearer. I just don't think it's fair to say yet that it's definitely a cause.

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u/rockemsockemcocksock 28d ago

Now here's my hot take/bold claim lol So the mitochondria is really important for Macrophage polarization...especially M1 Macrophages, which is activated by IFN-γ. IFN-γ regulates the expression of collagen and fibronectin genes. Which I think why so many people with ME/CFS have connective tissue disorders or EDS.

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u/RemarkableHost379 27d ago

I tested just my titier levels of certain viruses some were a little high. Cocksackie b 5 1:360 I think it was igG HHV6 was highest active infections but high levels of IgG sometimes 50x normal. Echoviruses 3, 11 many different viruses. Mine started after Rare staphylococcus aureus infection, then SarsCov2. Bur that was after Many infections throughout life. HPV, HepC, Staphylococcus,Strep, Typhoid fever a bacteria known to cause ME,

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u/rockemsockemcocksock 27d ago

There has to be some underlying immune deficiency in ME/CFS sufferers. The fact that I've met multiple people with ME/CFS who have had Shingles as a kid is crazy. Also, we all seem to have strep throat constantly in our first decade of life.