A protein that disrupts cells’ energy centers may be a culprit in CFS/ME

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.

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/

Hence it is important to make a distinction between the two, so you give proper treatment.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988339/

First problem, I do not have ME/CFS, let's use the Maes et al (2012) scale. 0-5 scale, 5 being the worst.

"1 means mild exacerbations of fatigue/pain/neurocognitive symptoms following exercise (either cognitive or physical)" Yep, after a longer, harder than normal bike ride I'm quite fatigued, in quite a bit of pain (bad back, knee, shoulder), and can't think particularly well.

"2 means moderate exacerbations of symptoms following exercise; 3 means severe, incapacitating exacerbations lasting less than 24 hours;" Accurately describes what happens when I do HIIT style intervals that exceed my work capacity, or what it's extremely hot outside. Dreadfully exhausted, usually have to nap, or lay on the couch, every muscle hurts, extremely sore, difficult & painful to move for 24-72 hours.

I'm not saying ME/CFS does not exist, this is just a terrible indicator.

The worst part is making it so specific obscures the large body of existing research that would provide tools for treatment protocols here, eg work capacity in athletes.

I think a more logical approach (for me) would be to say that there might be multiple biomarkers which could present ME/CFS type symptoms in different ways.

Dr. Bhupesh Prusty has recently given some lectures on his discoveries related to Fibernectin, for example. That could be a massive breakthrough, but we need more studies on it.

One other data point that might interest you: apparently a large percentage of ME/CFS patients are finding relief through valtrex. Apparently there is some relation to the herpes virus, although nobody understands how or why.

Any illness with primarily neurological symptoms have a history of medical malpractice and gaslighting.

As early as 1944, an author in the Journal of Nervous and Mental Disease remarked: "The history of prefrontal lobotomy has been brief and stormy. Its course has been dotted with both violent opposition and with slavish, unquestioning acceptance."

The last recorded lobotomy in the United States was performed by Dr. Walter Freeman in 1967 and ended in the death of the person on whom it was performed.

https://en.m.wikipedia.org/wiki/Lobotomy

If 90% of your patients come in sneezing and it's a flu for 30 years, then you generally give them advice for handling a flu and it works most of the time. But that also means you have a tenth of the experience handling the edge cases, at best.

Confounding variables make this a lot worse, like people having multiple symptoms, or not telling the doctor things because they felt dismissed before, or that they stopped seeing them because they gave actively harmful advice.

Having a lot of experience with doctors is what has convinced me medical training needs reform. Doctors actively ignore patients telling them objective factual reasons their advice is incorrect or harmful, and treat you as a hypochondriac for arguing.

I have stopped seeing a number of doctors over the years after they looked at my medical history and said "let's try X again", and when asked why, "just to see", when I have already tried X and two or three other medications in the same family as X, in the history (often from their own larger department, not something I provided), in the last 2 years.

I have stopped seeing doctors over me telling them that raising the dose of a medication made me much worse and having them then cut the visit short by leaving the office, saying they were late for something else, and telling me they were writing a script for double the dose as they left (and no, the drug in question did not have strange dose-response relationships like, say, Seroquel).

I have stopped seeing doctors over them insisting I just had a cold when I told them I was too exhausted to reliably walk two blocks to their office without an escort, every day for a week, not sleeping, and unable to keep any food down, without changing their mind, when I turned out to have pneumonia.

None of them were trying to be harmful.

Using "chance of occurrence" is a major logical fallacy for diagnosis identification and can ruin the whole practice.

Also, when a patient succeeds in getting a correct diagnosis after trying multiple doctors, the previous doctors generally will not find out about their mistake, so there's a bias against them actually learning the right probabilities: you can expect them to be overconfident on this score.

Being told you're crazy is a net nocebo.

After getting COVID, I went from being an avid coffee connoisseur to getting extreme anxiety from a cup (I've never had anxiety either). I switched to decaf for 2 years before finally incrementally building my tolerance back up. Several colleagues and random people I've met have had similar issues. It goes away over time, but is very real.

however, about ten years ago my general feeling of anxiety suddenly got much worse. I was able to cope with it using all of my usual anxiety coping skills but it seemed kind of off that everything had shifted. I went onto Lexapro, which helped. But then in 2019 or so things really started getting nutty again, where I'd be up all night with panic, often waking me up in the middle of the night, would be up until 5 am, finally fall asleep, then would have another during-sleep panic attack that would last all day.

Turns out I have a node in my thyroid producing thyroid hormone. I now take a very low dose of medication for hyperthyroidism and my panic-esque anxiety levels are kind of lower than they've been for like my entire life (still need the lexapro though, I am sure that my anxiety issues are not strictly the thyroid node).

Basically it sucks to have psychiatric illnesses that are standalone, but also compounded by other non-psychiatric pathologies.

We really need proper diagnostics for this condition, so that people can be diagnosed and not dismissed or even denied benefits and support.

Therapy didn't help but sertraline helped me a lot. I still have no idea what the root cause is, and I've never quite been the same since, especially my energy levels.

However, I am at least functional and can hold down a job!

That being said, when in doubt, I thin that doctors should trust patients (defendants are presumed innocent, patients should be presumed to be sick).

Stiffing the ill to spite possible asshats is a bad societal bargain.

Much better to say "I don't know" than to give a confident diagnosis just because you've run out of things to test for.

For diagnosis, there are clear diagnostic criteria, including the presence of post-exertional malaise, which is very easy to recognize simply by talking to the patient. (“I went grocery shopping last week, and I didn’t think I’d overdone it, because I felt okay that afternoon, and I had a full night’s sleep, but I woke up the next day feeling terrible and I could hardly get out of bed all day.”) There is a lab test that can be done for it, but it essentially consists of making the patient “crash” by exercising two days in a row and observing how much worse they are the second day. It’s not recommended for diagnosis because it’s harmful (it can take months to recover from a bad crash) and, again, not necessary.

For treatment, there are a few supplements and prescription drugs that can help each of the symptoms. Many patients experience dysautonomia (it’s in the diagnostic criteria) and there are several treatment options for that (beta blockers, drugs to raise blood pressure, drugs to encourage sodium retention, and others, in addition to non-pharmaceutical options like increasing salt and water intake). The fatigue itself is harder to treat, but a few supplements have been found to help. Cognitive dysfunction is a major problem that is definitely treatable (with ADHD and dementia drugs); that alone is enough reason to get diagnosed and treated.

However, this is likely to be a fool's errand in this case, because this kind of sequencing normally assumes that we can take a sample of many cells from the body, and that all those cells have the exact same DNA changes. If you have a mutation that is induced in a parent or the single-figure-cell stage of embryo development then that will be true, but for DNA modification by a virus in an adult it will not be. Each cell will have a different insertion. Now, there are some techniques that can sequence the DNA from a single cell, but they don't give quite as good quality data, and because you'd be wanting to sample a good number of cells to see what the distribution of insertions is, it will likely also be very expensive.