And I think that might be true, too. It's certainly plausible that PEM is like a resurgence of the trigger. Many people (with post-viral ME)...
I think this is accurate, too. I have seen many pwME say this.
Severe ME needs to be scored on symptom severity, not a proxy such as 'meeting two or more sets of criteria'. Number of symptoms alone might not...
I think it's a good idea. But the right people need to lead it and ask the right questions (as always). If PEM is measured too loosely, it will...
These tweets may also be informative: [MEDIA] Here it seems there's a thing called metabolic crisis or neurometabolic cascade in TBI and PCS. It...
Looking through that thread above, I saw this tweet from Karen at Physios for ME: [MEDIA] She notices a big difference between these groups of...
I would need to see how these people describe their experiences of PEM to know if it's the same thing. I don't think exertion intolerance is...
The 2021 questionnaire looks like it's in alignment with the IOM and NICE 2021. So I think this could be used. Though, I'm not sure how it's...
Yes, I'm also in the 'pacing helps but isn't guaranteed' camp. Sometimes, the threshold of what we can do before PEM is affected by invisible...
Jo said it best. As far as discriminant validity goes, the research we had access to suggests that the four symptoms of PEM, fatigue, unrefreshing...
Out of interest, have you had a new diagnosis now, and what is it (if you don't mind sharing)?
PEM according to the IOM is basically the same as in NICE 2021, although some of the descriptions are in different places and we use our own...
The EHRC is a mess, sadly. There have been a number of politically motivated appointments at the top which has meant they haven't been impartial...
So in essence, what he's saying is that the NICE 2021 criteria should be the clinical criteria used by all (as it meets the requirements for...
Well, we warned this would happen. Those long COVID groups who held us at arm's length (or worse, joined in the slander) will only have themselves...
IIRC correctly, they trotted out the 'cancer has PEM' thing during the consultation, but the reference they gave was for malaise in cancer. It...
And most of the NICE GL was drafted before LC was a thing.
The whole 'the world isn't ready for this information' schtick makes me wary. Conspiracy theories and harmful medical advice proliferate in such...
I think DwME are fine to state that it's a positive diagnosis (as opposed to a wastebasket diagnosis). I think earlier drafts of the GL used...
I agree that it shows all those things, too. And personally, I think the charity probably should do (and maybe has done) something about it...
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