Yup.. The Associations have not been able to change the label. These are just my observations and opinions: They do not agree with the label as...
I’m assuming there are probably multiple causes of the experience of fatigue. It doesn’t have to be caused by over-consumption of energy. And...
I only looked at the figures because everything else is way outside my understanding. The figures are as well for that matter. But as far as I...
Thanks for the answer! I have no idea about any of this, so all I can do is ask. @Jonathan Edwards you mentioned 55 steps or something like that...
But how large are those changes? Isn’t most of the brain active to some degree most of the time?
The Norwegian health minister and other government/healthcare people met with the Norwegian ME Association, ME Parents (another association), the...
It still has the fluctuating symptoms due to ‘exertion’ outside the attacks. So that can’t be caused only by the irreversible neurodegeneration -...
Reference 8 about the prevalence of ME/CFS among LC patients has a lot of flaws according to our thread on it, but the points about many people...
Maybe there are some clues in MS? I keep coming back to my uncle with severe MS, he’s the only one that understands PEM. And he seemingly has...
I was very confused for a moment, because I thought this was the same as the critique LC review. Another excellent article, @Mark Vink
I think that’s a good idea! I wouldn’t assume the GP have heard about the terms at all. Not saying that you do for ME/CFS-related terms. Mine...
That’s kind of what it seems like to me. At least I hope it will happen, then we can try to expose the ridiculousness of both sides. Although...
I understand that the name doesn’t matter too much when it comes to the diagnostic process, but there’s an case for that the name of one or the...
@jnmaciuch I have not been able to follow the entire thread so you might have described this already. But do you have any thoughts on why your...
I’ve tried to say ‘everything can cause PEM’, but I often get questions about if X or Y can do it. Saying ‘yes, that’s what everything means’...
I’m not sure I like push-crash because it implies that the patient has agency over wether or not they get PEM. Many do not due to life and...
My counter to that would be that the MS community seems to be perfectly fine having a neutral name like ‘flare’ and then explain what it means...
Agreed. Probably best to just avoid the word. Another one to avoid - everyone can be tired! I currently use extreme exhaustion, mostly due to not...
My uncle has severe MS. He’s the only person without ME/CFS that has understood PEM. He understood me long before I even knew what PEM was.
‘Exertion intolerance’ implies that exertion is the cause. But exertion usually refers to something active or willed. Exposure to stimuli is...
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