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Sorry I changed "increasing" to "adding" as I think that is clearer

How about this. I know it's long but I hope it can capture it since I want only a single choice poll, to avoid people pick two conflicting options. - Always/most of the time, regardless of prior exertion, and adding exertion makes it worse - Always/most of the time, regardless of prior...

I think for simplicity do you think this would work as a separate poll? Or are both dimensions important to put together in a single?

I see, so you mean a combo of the other Yeses. You have difficulty even with no exertion and also it's even worse after exertion?

Trish I don't quite understand the 2nd option?

Sorry didn't imply that you should do the experiment, but if you remember how it was like with ME and sleep before you ever did meds or if you took an extended break at one time and could gauge it.

What does everyone think about this new poll. I want to keep things simple yet look it from a slightly different perspective. Also, one thing that is hard to gauge is that once people have been on sleep meds for a while your body becomes dependent on them to sleep, and I want to know more...

@Milo this is exactly the same as me as described in my OP. Exertion leads to PEM and part of PEM is a cluster of nighttime symptoms including wired feeling, gut irritation, etc causing me not to be able to sleep all night until I eventually fall asleep from exhaustion during the next day or...

Wouldn't you eventually fall asleep with no meds? (like I do?) I doubt ME sleep issues would keep your body awake indefinitely? Also, how much are you exerting? If you increase your exertion do you still sleep at those times and do meds still work, or does it make it worse? You symptoms...

To give you my data point, I had a significant change in my ability to sleep at about a year or more BEFORE getting sudden onset ME (though not inversion), where I slept like a baby my entire life before that. After sudden onset, I went through an initial period of hypersomnia for 8 or 9 months...

It’s not just age of onset, I found there is also a limitation in my poll based on some of the responses in this thread, where people didn’t know whether to put yes or no if they only had it only sometimes, or for a variety of other reasons listed here. Maybe we should create another poll, but...

ME has generally made me feel like I’ve been poisoned, just an overall disgusting feeling and my body telling me it is very sick. I used to get acute nausea and vomiting during the first year but as the disease moved into the chronic phase it happened less and less. Being on keto diet helped...

Another possible explanation for the symptoms I described could be straightforward brain overstimulation from the exertion. Our ME poorer functioning brain cells (due to metabolic, inflammatory, or immunological dysfunction) might build up too many waste products too fast, such as lactate, which...

I guess though steroids have some utility in ME, @Hip compiled a nice list of PEM shielders and relievers back on PR https://forums.phoenixrising.me/index.php?threads/supplements-and-drugs-that-reduce-or-prevent-pem-post-exertional-malaise.48438/ Steroids seem to be the most complete PEM...

For me these symptoms are some of the earliest signs of PEM, but just like you if I keep exerting the PEM ramps up and insomnia becomes so extreme that sleep meds have zero effect and I will not be able to sleep for two days. I almost always crash hard at the end of that with a severe worsening...

Could the hypothesis that ME-caused low cortisol, particularly dipping too low in the evening, be an explanation for the symptoms I describe? It could be that ME causes our cortisol levels to be too low, due to metabolic dysfunction in the adrenal gland cells or something else. This would make...

To me this feels like a yes too. If one has to put effort to try and keep a normal circadian rhythm or if slightest things causes your ME to push you towards inversion then seems like my situation. I’m also currently having to exert more on a daily basis then I think most others here because I...

My entire life until a year or so before ME my circadian rhythm was normal and I always slept well. For about a year or so before getting sudden onset I remember that I started being more awake at night and having trouble falling asleep.

One of the most debilitating aspects of my ME is that the disease causes me major sleep inversion. On most evenings, after significant enough exertion builds up from the previous day(s), I primarily get a very strong brain wired-but-tired feeling and my gut starts becoming irritated. I also...

Might increased serum NfL also be a potential biomarker for ME/CFS since it is for Alzheimer’s and other neurological disorders? https://www.nature.com/articles/s41591-018-0304-3