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Comment by hliyan | Hacker News Reader

> the onset of ME/CFS is often associated with viral infections by patients

I can personally attest to this. I was an extremely energetic person (shooting straight out of bed in the morning, never requiring daytime naps or rests) until one specific week in April of 1996 when I had what I thought was a mild flu. The post-flu fatigue never really went away. I became acclamatised to it over the years and rarely notice it now (except times like this when I'm reminded that I'm significantly less energetic than the average person). I hope they find a treatment (if not a cure) for this soon. As I understand, some suffers are not as lucky as I am.

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Have you ever had an EKG done (for the heart)?

I recently had a minor cold that caused some sort of heart inflammation and could have exacerbated/triggered a latent heart rhythm issue. About 1-3 times a minute while resting, my pulse wouldn’t follow the normal rhythm (PVCs — could feel it too while pressing finger into the neck, without EKG).

It made me feel less energetic long after the inflammation subsided. I couldn’t identity anything specifically “wrong”. After having a cardiac ablation, I feel a lot better.

If you do, find a electrophysiologist, not a regular cardiologist. Asking the latter is like asking a plumber to find an electrical issue in your house.

I don't think you mean to be disrespectful but your comment is almost the equivalent of "did you try taking iron supplements".

I get where you're coming from (and it's great to be on guard for that!), but I think suggesting a specific diagnostic that can indicate a clear pathophysiology known to be associated with the symptoms they're experiencing is a little bit different.

Inflammatory responses are well know triggers of ectopic beats… at least according to my cardiologist and IM provider.

I think most general cardiologists know when to send you to an EP. Mine has an EP in his his group and just sends you down the hall.

Have done many over the past 25 years (we call them ECGs over here). All were normal. One suggested that I may have MVP (Mitral Valve Prolapse) at the age of 18, which I thought was the cause. But then more resent scans confirm that I don't suffer from MVP.

Interesting. I got a very weird illness last November and all I can say is that it wasn't COVID. Ever since, my energy levels have plummeted, I can't stop gaining weight, I've had worsening cognitive issues, and I've become intolerant to exercise(yes, the weight makes this worse).

Went through the same decades ago. Was prescribed Vitamin D 50,000 IU, once a week. Helped a lot. Best of luck!

Yeah I should try pumping up my D levels. I take 2,000 IU/day plus mid-day sun exposure but it doesn't hurt to try it. From what I've read, short term Vit D doses can be pretty high without causing an issue.

50K IU of Vitamin D per week would push many people into overdose range after a few months. Anyone taking high doses like this needs to also get blood tests to make sure they're not accumulating too much. Remember that it stays in the body a long time and therefore overdose can take many months or over a year to finally show up.

Vitamin D only really has dramatic effects in people who are severely deficient. Despite all of the influencers and podcasts claiming it's a miracle supplement and that we're all deficient, actual Vitamin D studies don't show much or any benefit outside of people who are significantly deficient.

But yes, if your Vitamin D is actually low then getting it into the normal range could have some dramatic effects.

Some doctors will prescribe short courses of Vitamin D as an almost-placebo when they can't find anything else wrong. It works quite well as a placebo for many people because podcast health influencers have been talking about it so much lately.

Tacking on for anyone alarmed or curious: The main distinction is fat-soluble versus water-soluble.

Fat-soluble vitamins (A/D/E/K) can accumulate in your tissues over time if you keep taking too much.

Water-soluble vitamins (such as C) are much easier for your body to filter and flush via urine. You could still overdose in the short-term, but a chronic accumulation is unlikely.

I wish this was true but I and other family members had rock bottom low vitamin D levels in lab tests. We supplemented until it rose to normal levels. None of us noticed any perceptible difference. Suppodedly this will prevent problems but it doesn't feel like anything has been fixed. I wonder how much is placebo.

Vitamin D is essential for strong bones. You'd probably only feel it with age when you develop osteoporosis

One should get regular blood tests if possible for a lot of reasons... but supplementing with 50k IU Vit D per week is safe for almost everyone. Should take K1/K2 as well.

Not going to go into detail but there are several recent studies showing that daily intake of up to 50k IU is safe. The concerns over hypercalcemia, etc. were tied to much larger doses per day.

https://pubmed.ncbi.nlm.nih.gov/28012936/

https://pubmed.ncbi.nlm.nih.gov/30611908/

"Seabiscuit" author Laura Hillenbrand wrote a disturbing (to me) essay entitled "A Sudden Illness" recounting the exact moment of the onset of her struggle with CFS. The apparent precursor infection was strep.

https://www.newyorker.com/magazine/2003/07/07/a-sudden-illne...

Also, Dianna Cowern, "Physics Girl" has been dealing with long COVID and CFS/ME for about a year now. Horrible.

https://twitter.com/thephysicsgirl?lang=en

Strep, in particular Streptococcus pyogenes, is really fascinating, and is potentially implicated in a lot of things. It's capable of what's called molecular mimicry, where a virulence factor called M protein cross-reacts with host antigens, causing autoantibodies to attack your own tissue, i.e. autoimmunity [1].

S. pyogenes has been implicated in other autoimmune disorders like psoriasis [2], which we know can be triggered by strep bacteria. In psoriasis, we have some evidence that it may set off a kind of bogus vicious cycle where a type of T-cell called a tissue-resident memory T-cell is "programmed" by an initial bacterial infection, but gets into a confused state where inflammation keeps going even long after the bacteria are physically gone. With other disorders, PANDAS [3], the cross-reactivity causes strep affect the brain and cause neuropsychiatric symptoms.

In some cases, strep bacteria are thought to linger in the body even long after a symptomatic infection, hiding in biofilm or in reservoirs like the tonsils, occasionally re-emerging to cause an immune response, similar to the Epstein-Barr virus. I would not be surprised if strep turns out to be the ultimate cause of some illnesses like ME.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684244/

[2] https://pubmed.ncbi.nlm.nih.gov/19781993/

[3] https://www.nimh.nih.gov/health/publications/pandas

Interesting! Earlier this year my spouse fell mildly ill and was diagnosed with strep (throat). She was given a high-strength anti-biotic that had two or, maybe three initial large doses followed by about 20 smaller doses. She felt better for a couple weeks but soon fell ill again. She was diagnosed a second time with strep. She was prescribed a wider spectrum antibiotic with a longer course of 28 days which seemed to do the trick.

Apparently I had mononucleosis and my friends still tell me nowadays that I was sleeping all the time everywhere back then. I clearly remember something switching in my energy patterns around 17yo but it's hard to distinguish it from other possibilities like atypical depression or sleep apnea for instance or combinations.

I managed to get through a bad flu infection in late 2003, but my health steadily declined over the next 5 years to the point where I could not get out of bed two or three days per week. Like, crawling on the floor to get out of bed exhaustion.

I've been tested and evaluated for lots of things. Fortunately, not a dire progressive disease like multiple sclerosis or Parkinson's.

Unfortunately, I have not been able to substantially improve energy level in a sustained way. There are times when I can gain momentum for about three weeks but then there's a collapse. If I push it, I've had vital signs go awry and it's enough to scare the emergency medical personnel who are called when I pass out... and then a few hours later, nothing worse than severe fatigue.

I wonder how far away we might be to sorting it all out, things you shouldn't be doing after a viral infection, or environmental factors that we will discover, or if we will be able to understand this at all without a more fundamental rework of medical understanding.

Honestly I feel like I can relate to what you're saying. Hoping as well they find more information regarding this problem soon.

Viral infections can also induce narcolepsy. I'm not sure if that's what did it to me, but I developed symptoms in my 40s and it was a few years after a bout of what I think was meningitis.

ahh. I know the exact month and year as well. March 2004.

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