The rashes yes. It’s sudden itchines and pain presenting as hives which I get in reponse to overexertion.
By PEM causing them, I mean they wax and wane similarly to my other ME symptoms in response to exertion.
I personally have had both rashes and what I assume is inflammation appear ever since PEM started causing allergy like symptoms. The...
Oh wow that’s pretty cool.
God I hate that sentence. Feels very minimising when there are so many adolescents who have been bedridden for years with Post COVID.
Worth noting those diagnoses are also more common in non-binary and trans people in general, probably due to being a persecuted minority.
No idea if the evidence in the study supports this, as I don’t have the energy to read, but that is a useful sentence for advocacy.
I think it can be not too difficult. Ie. if I take the CDC page. A couple example rephrasings to make it more inclusive. Can become People with...
Agreed. I really don’t see myself in any of those “official descriptions”. It always sucks to read, because it feels like my suffering is never...
Most resources aimed at very severe people are useless for the most severe of them. They assume very severe ME to be a roughly homogeneous thing,...
I really don’t like that “whilst”. It implies patient experiences don’t fit the literature and “contemporary treatment approaches”, which makes me...
Interesting. I can’t notice a difference when taking Daxidorexant or not.
Remarkable theatrics. Enough to convince a large swath of people that there is rationality and fairness behind the system. Enough to convince most...
Probably depends what kind of relationship.
I remember having the exact opposite. Entering a doctors office for the first time with ME. And they spent half the appointment [before I had even...
It’s cool that they got an inn with the moderators of that community.
So basically, they are handpicking those that already believe it will work. And making them pay an enormous sum which will induce sunk cost...
Glad this is being understood. It seems much of the patient community has unfortunately assumed Long COVID must equal chronic viral infection...
this has my blood boiling considering how they’re basically putting down me losing my entire life down to “fear”.
So it’s the equivalent of asking, “if you returned to work, what did you do to improve to the point that was possible?” Which to me sends the...
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