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I'm fairly certain that in my case the healing cycle is broken. I'm young, in my 20s, and yet it took me 8 months to recover from a lumbar puncture. I spent months unable to leave the bed because i had to lay completely horizontally 24/7. Wounds on my skin, even if minor, take a long time and...

They did. Schizophrenia GWAS identified an immune cause, but because the illness is triggered during development you would have to treat people before they develop symptoms which is not really feasible because not everyone with those genes develops the condition so you would end up giving...

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 recommend that you consider whether the benefits from reading them outweigh the negative personal impact. [edited for clarity] Reddit thread headed: What is...

"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 need to do the MRI because it's not an accurate marker of the feeling of having brain cancer. That's what they are doing here. Some people can feel like...

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 fingers at a miniscule group of patients on social media who like to "showcase" their illness and effectively claiming, from a position of authority...

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 now. For decades there was this narrative that ME was this illness that just so happened to be stuck in this weird place, a strange set of...

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 people inside NIH think ME is a BPS disorder that doesn't really deserve quality science, just some psychological help for those "stubborn" bedbound...

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 though, because it's only a handful of patients. Same reason the nanoneedle study wasn't taken seriously by anyone. It would have been better to publish a...

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 a very small minority, everyone else at NIH has no motivation whatsoever to research ME, and a good majority consider the illness to not be an...

Reading that mastodon thread, I get the impression that the NIH intramural study started out at great speed and with good intentions, and then lost momentum very quickly and started trudging through before coming almost to a halt. This was almost surely due to great friction and i would bet...

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 psychologist to find the cause, i wasted a year talking to this guy and i kept asking "ok, you just talk to me about random stuff but can we find this...

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 patients, i can't imagine a physician diagnosing both

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 confident that this is the case. As you say, an explanation might be that the severe young patients eventually get a lot better and put their past behind...

The mental gymnastics these people do are impressive. They go from: "Fatigue is defined as a lack of energy and an overwhelming sense of tiredness that is distinguishable from sadness or weakness. Fatigue in the absence of psychological co-morbidities such as depression, has been associated...

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 for decades. You don't need that many patients, just a blinded study with objective measurements. The NIH is doing a paxlovid study now because they are...

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 talk about decodeME. But for the last two years they have kept yapping about #teamClots, HELP apheresis and those stupid Patterson cytokines. There's a...

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 confidently asserting things that are completely wrong, but from a place of almost extreme scientific and moral authority. You are bombarded from all...

With every passing year the standards in medicine keep getting worse. How is that even possible? I can't think of another field where professionals are so apathetic that they don't care at all about improving and keep spiraling down. Some professions change for the worse, but medicine did not...

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 designed to figure out not the cause of the patients' symptoms, but simply if there was any "real" pathology like obvious organ damage. The things they are...