This is a theme that re-occurs. For example, the Medical Research Council have defended the PACE Trial at least partly because they funded it. Journals will be reluctant to retract papers as a can look bad on them. Et cetera
I'm afraid some of my memories from that time are not very fond.
I remember one time on the forum that no longer exists, somebody doxxed me giving my name (and not just my first name) alongside my username. This was at a time when I was a regular poster on the forum.
I reported the message...
It would be great if we could get the science to a stronger, more robust level. Reading this article does remind me that our foundations aren't 100% immune to scepticism; and also similarly it would be good if we were in a stronger position scientifically to deal with some weak arguments in...
I have been frustrated by the small (very small perhaps) percentage of people who improve who go on to donate to the cause. These people more than most in society should know how real it is. My speculation is a lot of them blame other patients for not getting better. A stronger research base...
Somebody asked about symptom prevalence decreasing over time: they suggest this could be due to treatments of one sort or another, not just pacing but also symptomatic drug treatments.
The gradual onset issue may also be relevant in terms of clinical diagnoses. Some strict criteria may miss people, perhaps particularly in the early years; a later diagnosis seems to give a worse the prognosis. I know I wish I was diagnosed in the earlier stages, when I was mildly affected and...
I know my own case, it started with an infection, but could be called either a gradual or acute onset.
If I hadn't been playing competitive sports, I might have been inclined to call it a gradual onset and might have incorrectly classified the onset of the condition as a few years later. Once I...
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