Poll: Do you have Myalgic Encephalomyelitis (ICC)

I fit the ICC for ME

  • Yes

    Votes: 56 83.6%
  • Atypical ME

    Votes: 8 11.9%
  • No

    Votes: 3 4.5%

  • Total voters


Senior Member
Not that it matters in my case, but what exactly is "Intolerance of extremes of temperature" when compared to thermostatic dysautonomia? Why the distinction in part 4?

I wish I had a doctor who would be willing to diagnose me with these criteria and not the "fatigue for more than 6 months" criterion. It's not really much to ask, is it? If they don't bluntly say that they believe it's psychosomatism or depression, I think they still have the same mindset but keep it for themselves. Otherwise, you wouldn't just dismiss this. What risk do they have making a diagnosis and writing a report? They act like they are supposed to try an experimental chemotherapy.

Nobody takes the "fatigue for more than six months" diagnosis seriously because everyone can have it.


Senior Member
U.S., Earth
Not that it matters in my case, but what exactly is "Intolerance of extremes of temperature" when compared to thermostatic dysautonomia?
I believe that "intolerance of extremes of temperature" refers to a worsening of symptoms in hot or cold weather.

I believe that "thermostatic dysautonomia" refers to the body's inability to regulate its own temperature. (i.e. feeling hot or cold with no reason)

I hope this helps.


Senior Member
I have both,yes there is a difference,For example wind,cold weather,,cold water or hot bath makes me crash,and when in PEM or a MCS reaction I can t keep up my temperature and I'm freezing cold,with 34 degree
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Senior Member
small town midwest
The question is: is it a muscle problem or a neurological problem? Either could cause a decrease in strength. Has any research figured out which it is for the majority of PWME who lose muscle strength?
This was a question that came up at the NIH conference today. Lot's of different perspectives on it from scientists in different areas of expertise. And part of the problem seems to be in the interaction between brain and muscles. And one scientist mentioning the mito and metabolic part of the problem too! Very fertile discussion.
NO! I won’t allow it. You will get better and you and your lovely lady will have a wonderful life. To all of us here too.
my apologies for not digesting these comments- surely you dont really have a deadly myopathy....I surely hope not.

Like I sure hope I don't have congestive heart failure, the test result at minute six of my Poor Man's tilt test experiment.

I have felt far less well ever since yesterday's experiment.

do we just keep processing things which feel unprocessible? I guess thats the task. Just keep- on - trucking- somehow.
Oddly, when I had severe fatigue, insomnia would sometimes also be a problem. I would go to sleep at night, and then wake up 3 or 4 hours later, and have "wired" insomnia for a couple of hours or so, and it would take I while to get back to sleep again. And sometimes is was not "wired", but just a feeling that you don't have enough sleep juice in your brain to get to sleep. The brain does not generate that nice sleepy feeling.

I put that insomnia possibly down to sleeping so much during the day. If you are sleeping that much during the day, you may not be tired enough to sleep at night.

Nowadays I get the "wired but tired" issue you mention when going to bed, where I am tired, but it takes me hours to get to sleep due to the wired state. I find taking 5 mg of melatonin about two hours before my intended bedtime really helps a lot. I find with this, I can be asleep in 15 minutes, rather than taking hours to get to sleep. Melatonin does not work for everyone though, and each person seems need their own optimal dose.

Thankfully I am now usually sleeping through the night, rather than getting these insomnia patches in the middle of the night, which are quite horrible. I really have sympathies for ME/CFS patients who cannot sleep well, as insomnia is one of many unpleasant symptoms of ME/CFS.

One thing that's still screwed up with my sleep though is the circadian rhythm de-sync. I invariably go to bed at around 5 or 6 am these days, and sleep until around 2 pm. I find it hard not to slip into this de-synchronized circadian rhythm.
I wonder if epitalon could help normalise your circadian rhythm? I haven't tried it yet but have heard good things about it in this context