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Comment by garganzol | Hacker News Reader

There is one more condition you may be interested in: CFS/ME. It manifests itself primarily as a chronic fatigue and is believed to onset after a trigger event: virus, intoxication, hypoxia, stress, and the like.

I talked to some people with MS and most of them told me the same story: the trigger event, followed by some time, then onset of a full-blown MS.

I wonder: are those diseases really different? Or maybe this is the very same disease but with a bit different outcomes: myalgic encephalopathy vs sclerous plaques. Both are driven by the inflammation, both have the same initiating sequence.

What leads me to strongly suspect that it may be just different manifestations of the same disease is the involvement of mitochondria in both MS and CFS/ME.

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And along with CFS/ME, also look up POTS, MCAS/MCAD, and EDS. My wife had a very bad bout of mono in late high school and 15 years later developed POTS, MCAS, and what the rheumatologist called "unspecified connective tissue disorder," which seems like a mild case of EDS. After 10-15 years of trying treatments, she's significantly worse off. :-/

There are tons of people (mostly women) out there with this set of conditions, and they're only starting to be taken seriously. It's a set of life-altering conditions and dealing with the medical system when you have it can be infuriating and exhausting. I hope you don't have any of these things.

My wife also has MCAS, POTS, and a connective tissue disorder that is not at the level of EDS. Was diagnosed about 4 years ago and is on treatments to suppress some immune responses, that has been helpful at taking the edge off some symptoms. It was like tumblers clicking into place when she saw a specialist and got the diagnosis, so many rather disparate, long-term symptoms all from the same cause.

POTS, MCAD-like (hyperlipidemia) and inflammatory conditions are triggered by CFS/ME as well.

I am really puzzled: are we dealing with the same thing but under different names?

For reference, NSAIDs combined with high-dose vitamin therapy help to resolve those conditions in people with CFS/ME.

In Bergen in Norway we had a big outbreak of Giardia parasite and a lot of people got CFS/ME after that. The Giardia was big because the parasites came into the drinking water from one of the water sources. I myself had this for of this for many years afterwards but one do not notice it since before you get rid of it. I was able to function normally but totally lacked energy, and everything was a chore. It was like the feeling the first time one drinks coffee and experience the way the fog clears up.

Conclusion. The study shows that Giardia duodenalis may induce CFS persisting as long as five years after the infection. Obstructive sleep apnoea/hypopnoea syndrome, depression and anxiety were important differential diagnoses, or possibly comorbidities, to post-infectious fatigue in this study.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598369/#:~:tex....

Also very impressed with google when searching for: giardia leads to CFS

I have this pet theory that CFS/ME is what a lot of long-covid patients are suffering. I knew a few people who have been affected by it, and it really limits them. Just as long-covid seems to.

I came to the same conclusion as well. Moreover, I was somewhat successful in healing post-viral CFS/ME using the therapy targeted at mitochondria with large doses of B1 and B3 vitamins [1].

[1] https://news.ycombinator.com/item?id=29138006

Its worth noting that 80% of those the develop post viral conditions just recover, we don't know why. It is unlikely your intervention is the reason you recovered, the majority of people do even if they do nothing at all. We do know that those that rest and stay below their energy budget have a better chance but that is about it, nothing else has shown efficacy.

Intervention was only applied to people who did not recover by themselves. But almost all of them recovered after intervention which leads me to believe that we are onto something here.

> using the therapy targeted at mitochondria with large doses of B1 and B3 vitamins

commercially available under the brand names... "Red Bull" and "Monster"

Nope. They do not contain the key element - vitamin B1 which is also called thiamine. Instead, they do contain large doses of caffeine which is known to abruptly inhibit thiamine absorption in the body leading to mitochondrial ETC inhibition when a person has deficit.

Then comes sugar - those drinks contain too much of it causing the unneeded insulin spikes. Sugar free variants are even worse - they (esp. aspartame) cause the insulin spikes as well but lead to insulin resistance progression much faster [1]. By the way, Insulin resistance and hyperlipidemia are hallmark signs of mitochondrial dysfunction.

Yes, they do contain some 10-20 mg of B3 (nicotinamide) and that's it. Not enough for the treatment; other key elements are missing.

That's why people with CFS/ME condition do not feel better after energy drinks, usually they feel even worse.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7014832/

Super interesting thank you!

They already have B3 B6 B12 (my mistake about M1)

So the energy drinks should contain B1 or be taken with B1, is that what you say? If they don't already have B1, why is it so given the other vitamin B? Could it be for a good reason?

About insulin resistance, Monster contains sucralose and acetasulfame. It's not clear if the effect reported with aspartame also happen with these. Still, a super interesting thing to check - one of the many reasons I love HN!

I guess they do not include B1 because caffeine blocks its absorption anyway. Which is bad.

It is better to have B1 in everything that involves energy instead of caffeine. But B1 will hardly be noticed by the general public while caffeine is addictive for many. Energy drink producers clearly maximize for profits and not for health.

Back in 1980s, there were proposals for a "chronic mononucleosis" or "chronic mononucleosis syndrome" as a diagnosis / standard disease. There were very comprehensive studies trying to investigate the patients who had chronic fatigue and other long lasting debilitating symptoms. After a good decade of studies, the research community found that this group of patients is very consistent (their complaints, symptoms, etiology), but failed to prove EBV as a cause (although the studies did not disprove it either) or at least come up with a clear serological diagnostic criteria. So, in 1990s they decided to define a generic Chronic Fatigue Syndrome (CFS) as a standardized disease. Other viruses and pathogens can cause CFS/ME and a broader definition would sometimes include even psychosomatic patients, so as a result CFS/ME has been quite discredited.

Diagnostic techniques evolved and research progressed. In the recent decade, new studies are very close to proving that EBV is indeed a likely cause of CFS/ME (well, one segment, as there are other causes too). Reference: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7912523/

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