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Eating helps me with maintaining blood sugar during exertion, but anything too much worsens the dysautonomia (presumably from blood going to digestion). Alcohol provides me the best quick improvement and as a bonus improves OI symptoms, temporarily only, of course.

I don't think it ever will be completely clear, because we have people with much better understood diseases than ME who sometimes are reaching remission in different ways or their disease is presenting in an unusual pattern. Stephen Hawking lived to be 76 years old with ALS diagnosed in his...

Everyone of us harbor latent viruses, even healthy persons. For example herpesviruses stay latent in the body, forever, once you are infected. Medicine in general has done a poor job at explaining how pathogens work, at least from my experience, since even the medicine students I have talked...

I suspect he is talking about percentage decrease rather than percentage point decrease, which makes it look more significant. The funny thing is that it's still wrong. 12.6 divided by 17.5 is 0.72, so according to White, the number of diagnoses are 72% of what they used to be in 2001. I...

Yeah probably not. A doctor in my country used to diagnose lots of people with ME/CFS. Later it turned out a couple of them had a mitochondrial disease confirmed. However, I do wonder about the temporary remissions many of us experience. I more or less get back to "normal" on the rare occasion...

Yep, you are correct LDN is nowhere mentioned. The test they did was to block opioid receptors for 24 hours, which restored TRPM3 function. So it seems to me like one would want to use regular dose naltrexone, not LDN, if the idea is to restore TRPM3. This is all even more confusing when you...

I'm not even sure GET as such is offered to those kids, since Finland doesn't have any national guidelines regarding ME/CFS. I doubt the hospital or pediatric doctors overseeing these kids even understand as much as an average UK GET therapist, who at least should be familiar with the idea of...

IV saline is most likely given specifically to help POTS symptoms and increasing blood volume, so wouldn't that be a very plausible treatment rationale, given that saline directly increases blood volume? For some reason, almost every ME/CFS child patient reported in the news here in Finland...

As far as I know, the initial observation was based on their 20 severely ill patients (link to presentation), so it seems that almost certainly we have at least around 50 patients that were tested after the hypothesis.

The 90% number is not impressive alone, but it's quite impressive in the reverse sense, that is, if it really turns out that literally every ME/CFS patient has this mutation (now we are up to 70 something). Then this mutation will be a sort of prerequisite of developing ME/CFS. Somebody in...

Interesting, the very first paragraph highlights some of the issues I've had since a kid. When I'm in a "cocktail party" situation, my brain can't filter out other noises very well, so the whole situation ends up a bit embarrassing. I have to guess every second word that is spoken to me and form...

Based on how their website art and tech looks like it was pulled from about 2007, they don't seem much relevant.

I'm not too into these Facebook groups regardless of the topic. The problem with Facebook is I already follow a few groups with ME/CFS and they tend to flood my timeline, so these groups quickly become impossible to follow due to the sheer amount of new posts and lack of organization, especially...

Probiotics are intended to work in a specific place, namely the gut and the large intestine. I'd say if you tested how a white blood cell responded to a probiotic in the nanoneedle, it would be a bit similar as injecting probiotics directly into the bloodstream and seeing what the reaction is...

The metabolic trap is simply a name given to a still hypothetical model of tryptophan building up in the cells due to issues with tryptophan to kynurenine conversion caused by a damaged IDO2 gene. That isn't to say there aren't other metabolic problems in ME/CFS, but they are looking for a root...

Yeah and IMO this is the way to go, at least from my engineer's perspective. Simply filter the autoantibodies from the blood and see what happens, if there is improvement you have demonstrated both a disease mechanism and a treatment. I don't know why others aren't pursuing it. At least in...

Probably the same reason we hadn't heard about the "something in the blood" factor messing up cellular metabolism in ME/CFS until Ron Davis came and did some actual research on ME/CFS patients. I believe Carmen Scheibenbogen was the first to discover these autoantibodies in ME/CFS/POTS patients...

Nice, let us know how it went. For patients in Europe, it seems almost impossible to get this treatment other than from paying it 100% of your own pocket. Dr. Jonas Bergquist spoke in the latest OMF symposium about having found these autoantibodies in about 70% of their patients at Uppsala...

According to Wikipedia: I can buy those herbs individually, they are all very accessible and cheap, so I see no reason why you would want to buy this expensive product even under the hypothetical that it was somehow proven to work.

If somebody claims that homeopathy cured their cancer, then I wouldn't necessarily jump to the conclusion that the cancer wasn't "real". Unless someone deliberately invented their cancer, I'd assume most cases are backed up by some kind of doctor's diagnosis, as you can't really self-diagnose...