Procrastination in action. Could they have prepared better for post-viral problems, or for a global pandemic in general? Of course, but budgets are quarterly or annual, and the tens of trillions of dollars extra for being unprepared won't show up on their budget sheets. Prepare for lots of...
I don't know much about the other disorders that were used for comparison, but I expect that most of them have actual medical services available: tests and treatments. We have nothing but the forums. If a new discovery about ME comes out, these forums are the easiest place to find out about them.
Just what have we learned about ME that can be applied??? Avoid things that make your symptoms worse? GET/CBT won't help? Don't expect actual help from the medical system?
The problem is that we don't yet understand ME, so we can't definitively say that some symptom is or isn't due to ME. I haven't heard anyone report tight muscles as an ME symptom, but that doesn't mean that it can't happen. Hopefully the right specialist will be able to figure out why the...
Looking for patterns can be a powerful tool ... but it can also lead to silly things such as random patterns of stars in the sky being interpreted as people or animals whose characteristics affect your daily life.
We do need ways to measure fatigue. I think it will require a lot of research...
I agree with arewenearlythereyet: this 'Nobel-candidate' hypothesis seems to boil down to: "something in the body is malfunctioning!". Unless there's an effective "repair homeostasis" treatment, it's not a useful hypothesis.
Someone should do some studies of microbiomes of patients with broken bones, gunshot wounds, or other such trauma. Will they find changes in the microbiome? I expect they will. Eventually, they can come up with some methods for determining when microbiome changes are actually caused by a...
I think that (testing whether PEM can be triggered by electrical muscle stimulation) would be worthwhile. There are other possibilities, such as the cognitive effort to get those muscles moving being responsible for triggering PEM. I'm pretty convinced that muscle damage, and the consequent...
I think that just indicates that the device isn't measuring what you think it's measuring. Extreme physical exertion probably raised heart rate and resistance to blood flow. I suppose it's possible to have a fast heart rate and low resistance to flow, which would be the same 'power level' as a...
Not every PWME gets PEM from physical exertion either, or even gets it to the same degree from the same exertion. I could hike or bike for hours without triggering PEM, yet climbing a ladder once would trigger it. I expect that a lot (most?) of us have both triggers to some degree (although I...
This study came up on PR, and my comment was that researchers should look into using cognitive triggers for PEM. Maybe socializing for 10 minutes will produce the same level of PEM, but with less harm to the patient. It would also avoid extraneous factors resulting from the physical exertion...
It wasn't easy. I knew that something in high-protein foods was making my symptoms worse. Peanut and soy butter had the same effect, so it wasn't meat-only. Then I remembered that I had some gelatin in my cupboard. That was the worst trigger yet, and it's essentially amino acids, and three...
I was suspicious of Complex V long before I knew about ME. I thought I had some problem with kynurenine production, which involved superoxide and Complex V. There were some other factors, now forgotten, that kept me suspicious. Now I've become sensitive to proline, which reduces activity of...
That doesn't help with understanding the impact of cognitive exertion. :thumbsdown:
Experiments with cognitive exertion could lead to less-harmful methods of triggering PEM for research projects. That's assuming that cognitive-induced PEM actually is less harmful, which we don't know for...
They could also induce PEM via cerebral exertion. Does anyone know whether socializing or other cerebral exertions are as likely to cause crashes as 'maximal exercise tests' are?
I was going to suggest this to the researchers, but I couldn't find a way to contact them.
I think of it as being in prison for something I didn't do, with no idea when, if ever, I'll be released. I certainly don't have the freedom to do what I would like to do.
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