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I'm questioning the claim that altered sleep pattern is the cause of unrefreshing sleep. Unrefreshing sleep is a hallmark/universal symptom (ME/CFS patients are constantly unrefreshed, after all) whereas altered sleep pattern is not. My take on it would be that it is one of plethora of anomalies...

Sleep disturbance and unrefreshing sleep are probably separate things. Some patients suffer sleep disturbance as a part of their symptoms. Some (many?) don't. Unrefreshing sleep, on the other hand, is universal. As for me, sleep and symptoms are inversely correlated. I sleep better while...

There is that default mode network again. I don't know if it is an independent finding or over-active DMN is now fashionable, but the team from Griffith U reported a similar finding with ME/CFS. If neuroinflammation model doesn't pan out, this would be my next go-to theory for my ME/CFS which...

I haven't read the full paper yet, but the abstract seems to be equating low HRV to PEM. I don't think that has been established in either direction. (I once played with HRV long time ago and I wasn't able to correlate HRV to my PEM). As for VT1 or VT2 as the PEM threshold, there has long been...

Interesting. Measuring the intensity has been something I've been struggling with. It is not much of an issue for healthy individuals obviously: you can measure heart rate, VO2, etc. For ME/CFS, the typical measures don't work well because the extreme sensitivity to tiny exertion. We need...

I still haven't heard any satisfactory explanation of PEM with itaconate shunt or whatever-trap. So, I dug up and re-read Cort's writing on it, and still haven't found one. Robert Phair's response on it seems to confuse PEM with fatigue, so that wasn't a good sign. At least he seems to be...

Younger talks about morphing microglia from inflammatory state to anti-inflammatory one. But he doesn't say how HIFU does that. It seems to me drugs are a better way if the inflammation is wide-spread as he thinks. I don't know why he would be turning to a focused energy device when he already...

If IH or CCI can mimic ME/CFS, I suppose there are other conditions that can also mimic ME/CFS. The fatigue and PEM in those conditions wouldn't be classified as ME/CFS though, since they are explained by the underlying conditions. But we could call them comorbid-ME/CFS related to or caused by...

Maybe I'm suffering a jet lag after travelling 16 time zones, but I'm having a hard time understanding what this thread is trying to accomplish. May be someone can start by explaining to me as if I have a brain fog? 5-year-olds are pretty smart believe or not. Their brain will churn to make...

Anybody with an idea how this itaconate function/malfunction may explain PEM?

They assign the same score for 45min of medium activities and 30min of strenuous one. I think you will find yourself crashing real badly if you do the strenuous one instead of the medium one, in that proportion. That's my experience, at least. I have cut the duration by half if I increase the...

Is the off-level use of safe drugs really comparable to assisted suicide? Or is it just your belief? If it is your belief, is it fair to impose that on others? The ethics here is no different than any other off-level use of safe drugs. The only difference is the possibility of making your ME/CFS...

Caffeine didn't make any difference when I was sicker. Ephedrine had some effect though. But caffeine also started to have some effect, particularly for the afternoon crashes, since I moved to the mild side of the spectrum. Neither raises the PEM threshold, I don't think. But they do moderate...

Or PEM afterwards. It's rather meaningless to boost the distance if the increased distance triggered PEM.

I don't quite understand. If you have an intractable disease, you can either wait for the science to find the solution or do something on your own. Why shouldn't your belief effect your choice? It's just a matter of evaluating the odds according to your belief; there is no social/medical ethics...

The heterogenous nature is why I suspect some drugs may work for some people even if it doesn't for the majority. Most drugs probably won't do anything for most of the patients. But you are right, the effect could go either way and you wouldn't know which way ahead of time. At this point...

I'll have to summon my analogy of getting lost in the wilderness again. If you believe the rescue chopper is coming soon enough, the best thing to do is to stay put. If not, however, you have to try to find your way back home on your own, because it's a certain death from hypothermia or...

This sure sounds like CBT/GET people: average patients don't have knowledge, so we the experts should shove it down their throat. It is as unethical to deny people with intractable disease from experimenting with X as to impose Y on everybody, when X is known to be safe enough and Y is known to...

That depends on your belief of the odds of your ME/CFS getting worse by X vs odds of the science coming through for you. As much as some people think they know, both are no more than beliefs. Given that, the choice should be left to individual patients and either choice should be accommodated.

Yep, there is that conditioning effect. The problem, of course, is that it doesn't improve PEM threshold. For most of us anyway. You keep pushing thinking that you'll continue to improve, you'll inevitably hit the wall and drop like a fly, possibly making your condition worse.