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...
Putting all of the issues with the psychological concepts they describe aside: I wonder when Chalder is going to learn the difference between...
The purpose of this thread is to identify and rename words, phrases, etc. that are used to describe aspects of living with ME/CFS that are...
@CRG you’ve reminded me of one of my experiences. In the first 2 years of post-covid-ME/CFS I really struggled to use my muscles. I used to...
Does this mean that they already had samples of ME/CFS patients? Do we know how they collected them and how diagnosis was confirmed?
Thank you! I came across it in SoMe, OMF has written about it: https://www.omf.ngo/tryptophan-melatonin-metabolites/ We’re pleased to share a new...
@poetinsf we’re going in circles here. I believe your suggested approach is about the most inefficient way of solving a problem that we barely...
Do you even have to measure the economic impact to argue for grants? Could it be sufficient to just say that the DALY is high, so we should...
Are they saying that more than 1/3 did not experience symptoms after 90 days? It seems like it: [IMG] [IMG]
[IMG]
71 % self-reported adherence is quite bad.
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