From the moderation team: Many of the comments about people with ME/CFS on Reddit are ill informed and unkind, and may cause distress. We...
"We don't think your fatigue is real, so your activity level doesn't actually matter to us" Imagine telling a brain cancer patient there's no...
What makes that behavior so appalling to me, isn't so much the prejudice and hate expressed by those doctors, but the fact that they are pointing...
This is what it has always been about. Doctors with those views have expressed nothing but disgust towards me.
After seeing the NIH waste billions on long covid, and most of the European countries doing nothing (as they have always done), it is pretty clear...
This is what I said in the other thread. There was initial enthusiasm, but then the momentum quickly came to a halt as a significant portion of...
Agreed. He is getting paid plenty of money to do it. It's his job, it's not like he is sacrificing himself. It will be very easy to attack...
Maybe the BPS people did not have direct involvement and there was no direct sabotage, however it is obvious from my point of view that aside from...
Reading that mastodon thread, I get the impression that the NIH intramural study started out at great speed and with good intentions, and then...
You know, this actually kind of makes sense. A decade ago, back when I was told by a psychiatrist i had a psychosomatic illness and sent to a...
I thought having LC diagnosis + ME symptoms was enough, if it requires a straight ME diagnosis then that would explain why we can't get those...
From my experience, i have seen the exact opposite. The most severe patients tend to be young males, or just young in general. I am fairly...
The mental gymnastics these people do are impressive. They go from: "Fatigue is defined as a lack of energy and an overwhelming sense of...
They keep talking about antivirals being potentially useful but never set up a study to figure out if that's actually true. It's been like this...
I'm sorry, but if only 380/5000 LC people have completed the questionnaire at this point, there is clearly an issue. I never see anyone with LC...
As others have pointed out, in most cases getting an ME diagnosis involves going through a long medical gauntlet where everyone is against you and...
With every passing year the standards in medicine keep getting worse. How is that even possible? I can't think of another field where...
What happened here is very simple. At NIH, aside from Nath, nobody thinks ME/CFS is real. Because of this, the NIH long covid studies were...
This is a good example of why we need to study tissues more in ME. Everyone keeps looking at the blood and we never get anywhere. Studying gastric...
I will be decades before something like this is used for ME. it can't even be used on humans yet, or live animals because it's too dangerous. It...
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