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I'm not sure how you can know that, since it would be hard to tell when the virus starts replicating enough to trigger the immune system. Also, if it was triggered by the virus--or rather the immune system's response to the virus--that would be independent of exertion. I could certainly see...

No. I did have a brief period (few months?) where I had what might have been OI (abrupt exertion would drop blood pressure in my head), but that passed. Another example of what did and didn't trigger PEM: shovelling soil normally (stomp shovel in, toss soil into wheelbarrow) didn't cause PEM...

I voted 'yes, after exertion', but I'm not entirely convinced that it's due to ME. My sleep seemed normal for the first decade or so of my ME, and then I had more trouble sleeping, so age might be at least partly responsible. If someone gives me an effective treatment for ME, I'll see if my...

I didn't answer the question about refreshing or not refreshing because I think my sleep refreshes what it normally should, but ME gives a continuous feeling that is similar to being unrefreshed. Does anyone else feel that 'unrefreshing sleep' as a symptom for ME should actually be 'I feel...

I voted for 'no effect' since eating in general doesn't affect my symptoms. That's ignoring certain (all too many) foods that I have a bad reaction to. I've yet to find a food that gives me a beneficial reaction. :grumpy:

A couple of years ago I discovered that cumin (cuminum cyminum) was very effective at blocking my physically-induced PEM (didn't affect cerebrally-induced PEM). A level tsp of ground cumin would completely block PEM for 3 days. If I forgot my dose, and PEM started, taking cumin then would...

I think it's possible that some PWME could sustain permanent damage, but I think that's not typical. I can't even estimate how many PEM episodes I've had, and none have seemed to have caused any permanent damage. Furthermore, even after many PEM episodes, I still got temporary remissions that...

My theory on PEM is that it's a neurological switch of some sort. Cognitive exertion can trigger it directly, with minimal delay. Physical exertion triggers the same switch through cytokines, whose release is delayed by how the immune system works. For me, the type of physical exertion was...

I use the terms "physically-induced PEM" and cognitively-induced PEM".

No, there can be such a switch. Physical exertion triggers an abrupt rise in IFN-g ~24 hrs later, and that cytokine can trigger all sorts of effects, such as activating glial cells. T-cells, and maybe others, have pretty amazing timing mechanisms. My ME started with a type IV delayed food...

To answer the original question, I believe that PEM, and ME overall, arise in the brain, with metabolic problems in the body as common--but not essential--downstream effect. My ME didn't involve any reduction in muscular strength or endurance, or any other indication of impaired mitochondrial...

My physically-induced PEM had a consistent 24 hr delay. That fits with the rise in IFN-g that occurs after exertion. The IFN-g would trigger changes in glial cells, which in turn could cause the symptoms of PEM. Viral infections (I only had two since developing ME) caused the same increase in...

When I asked for some to try, my doctor was fine with prescribing it, because it's at such a low dosage that the chance of bad side effects was negligible. It worked extremely well for me, blocking my neuropathic pains, but didn't affect any other ME symptoms. After a year or two on LDN, I no...

The question is: why is this not being used as a diagnostic tool for ME today? Lack of funding for proper development? I believe that glial cells are involved in ME. Astrocytes working abnormally could account for the cererbral vascular hypoperfusion.

L-carnitine solved a problem I was having with fatty acids a few years ago. Fatty foods--and I think it was specifically the palmitic acid--made my symptoms worse. Taking L-carnitine, which is critical for fatty acid transport into cells, with a meal solved that problem. After a year or so, I...

That's good to know. I tried to find out what was supposed to be 'normal' and didn't find a definitive answer. When I'm feeling normal levels of ME symptoms, my oral temperature is usually 36.65. Yes, that seems like excessive precision, but that's what several different thermometers kept...

It's hard to say whether my ME has gotten worse over time. There have been plenty of changes--new symptoms or sensitivities appearing, and existing ones disappearing--but overall about the same. Of course, over time, age-related problems are going to appear, and it's hard to know whether a new...

I like the concept of linked subsystems failing and affecting other subsystems. It could explain the gradual changes in my ME symptoms over the years. One subsystem weakens, and another gradually strengthens to 'take up the load'.

I've gotten into the habit of including the (Cuminum cyminum) whenever I mention cumin, because there is confusion. The black cumin is frequently mentioned as a health product, while regular cumin isn't. My guess is that it's the 'rare ingredient' marketing approach: sellers of fake treatments...

I think my tinnitus started gradually sometime after my ME did (that was 2001). It might have been age rather than ME. I haven't noticed a correlation between ME symptoms and tinnitus severity, but hadn't really paid attention before. My tinnitus did go away temporarily (hours?) last...