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I agree; it can confuse perceptions, and it doesn't apply to all PWME. My preferred explanation for how it feels is how we feel when we have a flu: we feel lousy, achey and lethargic/brainfogged overall and just want to hide under a blanket until it goes away. ... and after 20 years of this...

A good topic. As with several other posters, I do not feel any reduction in available energy or the rate at which I can use it. I believe I have a neurological disorder which impairs my ability to make the effort required to do things. My legs might feel like going for a 40 km ride (and would...

What's the goal of providing funding for medical research? Is it just to boost the public image of the donors or fund allocation organizations? Are unspecified-target donors assuming that their donations will be wisely allocated for maximum reduction of suffering in the world? Are...

How are waste products removed? If they're pumped out through astrocytes, do the astrocytes not absorb it from CSF? Regardless of the final 'waste drain', movement of fluid would be important for preventing localized buildups of waste.

Well, what do you expect from a psychologist? It's the 'if you have a hammer, everything looks like a nail' syndrome.

There was another research paper last year that explained how the slow brainwaves of deep sleep helped pump fluids from the brain. Astrocytes also open the BBB a bit during sleep to transfer waste out. I'm not sure whether they used markers to prove it.

You could tape (or otherwise attach) strips of light-blocking material to the outside edges of the door, extending past the opening. I think that would be way more convenient than a whole sheet of fabric. Probably easier than the foam strips too. If you care about how it looks, you could be...

Also, at least some parts of the immune system are non-linear (think of the result a a tiny amount of allergen to some people), so the measure of one or more inflammatory markers may not say much about the severity of ME symptoms. Another complication: maybe it's not an inflammatory cytokine...

I wonder whether anyone has considered making all medical test results available as anonymous 'big data'. Imagine if this research group could access several hundred or thousand scans to provide some baselines or variabilities. Obviously there would be problems with variables in how the tests...

Treating ME symptoms is pretty difficult, because I think in most cases no one knows what the actual cause of the symptom is. I've managed to treat some of my symptoms very effectively, but those were accidental discoveries. LDN was the only treatment I took intentionally that worked, and even...

I wonder whether that simply a bias due to education levels, economic status, or some other such factor that affects reporting of ME. It might even be that doctors in that locale tend to come from different education or cultural backgrounds, which affects their diagnosing or reporting of ME...

I know a sure-fire cure for brainfog: just wait. Eventually you'll be dead and your brainfog will stop. Yah, not really helpful either. :rolleyes:

I fit the Canadian and International criteria for ME. I did have neuropathic pains (still do when ME is worse). I definitely had PEM. My ME might be non-standard, but I've read other people's replies about not having physical limitations, so I'm not the only one. Muscle problems might be a...

When I heard that the vaccine was now available in Alberta for my age group with chronic health conditions, I wondered whether ME would qualify, and whether my doctor would write something to say that I might have it. Since I'm not in any great rush to get the vaccine, I'm not worrying about...

For me it is. There are a bunch of tasks on my 'todo list' that I just don't feel like doing. However, if it became critical to do them, I could, even if it required strenuous physical work. The limitation seems cerebral: tasks requiring lots of cognitive effort, or ones with frustrating...

As far as I could tell, my ME didn't cause any effects on my muscles. I seemed to maintain the same level of strength and endurance. For me it's more of a limitation of willpower to make myself do physical or mental tasks. I'm just guessing that I wouldn't show the reduction in the...

It's not quite that simple. The perception of fatigue or pain involves signals from sensors, and communication through the nerves, and processing. Problems can arise in any of those links. Neuropathic pain, as I understand it, involves normal levels of sensor signals, but the processing cells...

I agree that it looks like cherrypicking, and only a teeny tiny cherry at that. I also agree that "perception of fatigue" is correct for the title. If they're not measuring actual physical or mental fatigue, their data is only people's self-judgements about perception of fatigue. ME doesn't...

I wonder whether this only applies to a subset of PWME. That would need a large study.

Yes, that's true, but with ME, what makes a person worse depends on the person, so there is no list of what everyone should avoid. Strenuous physical activity doesn't make my ME worse; I'd probably be worse off if I avoided exercise. There are foods and nutrients that make my ME worse, but...