I note that those papers use terms such as "hypothesized" and "suggests". I can't recall any paper showing definite abnormalities consistent for all PWME. A lot of the studies have problems, such as comparing results with healthy controls, rather than people with similar physically limited lifestyles, or they use poor criteria in selecting subjects. Some may even resort to outright fraud, manipulating the results to get more funding. They are not solidly supported theories to base treatments on.
but thats not how i approach things.
If you approach it as "I should try this based on this solid theory", you'll have to wait for a solid theory to arrive, because none have arrived yet. There is no credibly verified theory for ME yet. There's still no definite marker for ME, so we can't tell whether a success story was actually about ME. I think the theories so far are about as trustworthy as astrological predictions (meaning not at all).
What worked for me? Cumin (cuminum cyminum) blocked my PEM 100%, and eventually resulted in full remission of that symptom. T2 (3-5 diiodothyronine, although iodine worked just as well) effectively reduced my symptoms severity. That symptom/effect vanished when the PEM did. LDN effectively blocked my neuropathic pain for ~2 years, and then I didn't need it anymore. Sadly, the pains returned recently with my new sensitivity to dietary fibre, but LDN still seems to block that pain ... even though the prescription is nearly 5 years past expiry. I had short-term benefits from carnitine and consistent but barely noticeable benefits from some herbal compound (Fisetin, IIRC). I've had some sleep benefits from conjugated linoleic acids (ruminant fat, or evening primrose or safflower oil), but I don't know whether that's really ME related.
Aside from those, most of my improvements have come from noticing what foods I need to
avoid. Those weren't from theories, just observations of how I felt. I still don't have any good theories for why those treatments worked (LDN is
probably working by boosting endorphins), or why certain foods/nutrients make my ME worse.
I'm still waiting for a good theory for ME that is supported by strong evidence. My pretty-vague hypotheses for the root cause of ME involve some feedback loop involving glial cells, probably fairly localized in the brain (and thus hard to discover from blood or CSF samples). I believe that abnormal functions in small numbers of glial cells could explain most if not all of ME symptoms. Deeper (and much vaguer), I consider possibilities involving cell functions, membrane abnormalities, and neural mitochondria (slightly different DNA than the rest of the body) abnormalities.
I've had several temporary full remissions, with very rapid (less than an hour) switching from full ME state to full health (and sadly, rapidly back to full ME again). Thus, one of my tests for a theory is whether they can explain such rapid switching of state. To me that pretty much rules out microbial infections (or dysbiosis) and demyelination.
The effect of T2 was rapid (< 1 hr) and the effect lasted a very consistent 21 days (for about 2 years). That too seemed to be an abrupt switching of state, and the duration to me suggests that the surge in T2 boosted production of some cells or cell components that have a consistent lifespan. I know that t-cells have that sort of precise and consistent timing, but I don't know what other cells share that sort of mechanism. FWIW, the first few doses of iodine or T2 triggered temporary full remissions, lasting less than a full day.
Prednisone also triggered temporary remissions the first two trials, but then never worked again (all too common with ME treatments). Cumin did the same thing. Thus I also test new theories by "why would these three different chemicals trigger temporary remissions?" I also test theories by "the theory says that treatment x should work". When hundreds or thousands of us have tried that with no benefits, it implies that the theory is wrong. I expect that all of the treatments in your list have been tried by others here, without ample reports of major success.
I'm not trying to discourage you from testing treatments; such experiments certainly improved my quality of life. My experience with ME treatments is that the theoretical treatments aren't much more likely to work than things randomly selected in a grocery store. Some people here report spending tens of thousands of dollars on theory-based treatments, with none of them having any beneficial effect. I've probably spend only a couple of hundred dollars on theory-based treatments, and those were my theories, rather than published ones. So, if you are money-constrained, expensive theory-based treatments are not, IMO, the best bang for your buck. I suggest first trying cheap spices&herbs, or some foods you haven't tried yet. For testing vitamin/minerals, an ordinary multivitamin tablet might work. It did for me, which led me to further testing to isolate iodine as the important factor.
Also, don't get so hung up on theories that you ignore negative results. Many of us have negative effects from treatments that have worked for others, or from foods/supplements that are 'supposed to be good for us'; the problem is that 'us' refers to normal healthy people without a weird disease that causes abnormal reactions. I suggest listening to your body; if the 'this might work' treatment makes you feel worse, you are probably not going to feel better if you keep taking it. Some people might say that 'it's a temporary effect', but with ME, I'd say it's more likely not temporary. I tried anti-candida treatments, and got the expected 'feel worse' reaction, so I thought it meant I was on the right track. Many months later, the 'feeling worse' continued unchanged, so it probably wasn't the expected mechanism.
Furthermore, ME changes over time, and some treatments only work for a short period, so occasional re-testing of treatments is worthwhile. I'm not sure when cumin cured my PEM, since it wasn't until I re-tested it by intentionally missing a dose that I discovered that the expected PEM didn't occur. Optimum dosages might change over time too. Just to be even more malicious, ME might change so that a treatment that didn't work before, or which worked and then failed, might start working again, and you won't know unless you re-test.
Horrible, nasty, malicious disease!
