Search results

It seems this flows from the idea of "illness labels", where all we're doing is slapping a label on ourselves to justify moping around and being dissatisfied with life. Or something. It's all very vague and frankly incompetent. Remove the label. Remove the illness. This is frequently discussed...

Beyond parody. This obsession with "labels" is really weird. They invent a framing and insist it came from us, then use our insistence that it's an invalid framing as some sort of proof of... something. Heads they win, tails we lose. It would be laughable if the consequences weren't so...

Kinda shows that, despite advances, we are still barely one step away from the dark ages in our medical knowledge, that we still have to rely on such barbaric sources to try to fix common problems. I get it, bacteria are hard to handle and we barely know much about the microbiome so it's hard...

Meh. Identity is bull. It's loss of function that is significant. Identity comes largely as a result of function: what we do becomes who we are. I'm the same person I was a decade ago when I fell ill. My life has effectively stopped, my identity fixed from this point. It will resume the minute I...

I also have a irregular heartbeat. Or anyway I'm not sure if it's the right term but I regularly skip beats. Beat-beat-skiiip-beatbeat-beat-beat etc. I have no idea how to check for that. My heart has been checked several times and it's apparently fine but I've had those skips for a long time...

Wouldn't the opposite be really surprising? What kind of idiot expects very sick people to be worry-free and happy? Especially as they lose much of their life and normal support systems, including friends and family, abandon them whole. Next you're going to tell me that people experiencing...

Some local news for once! A rare thing in Canada. Not much groundbreaking stuff in the article but it's a fair and generally accurate portrayal, centered on Dr Moreau's work on twin studies, with a personal account of one of the twins affected by ME. Moreau's team is comparing the twins' mRNA...

It's weird that there would be so few. I follow a few EDS tweeps and fatigue (in the actual, accurate definition and not a proxy for many other things) seems about as prevalent as with ME and MS, although there is way less concern in the literature than from patient testimony. I guess that's...

With extreme prejudice. As in: this was a massive mistake that needs to be rectified and steps should be taken to assure something like this never happens again. It will take some time because of liabilities but it has to happen. It was a massive blunder of disastrous impact, one that added...

The trick is not to care or bother with the consequences. If you just ignore the bad stuff, everything is good! Positive psychology! No harm done! Oops, I mean: no, harm done!

Isn't the UK adopting the SNOMED changes classifying it within neurology? Despite its poor relevance, NICE does not define it this way either, because it is not defensible by reliable evidence. Only the NHS does and only in internal documentation, always denied when asked directly. How can two...

Maybe it's a random anecdote, but whatever maybe not. About 4 years into a relapsing-remitting course, I had had digestive issues for a few years. Nothing serious, mostly discomfort. I was in remission from ME at the time, though had experienced mostly CNS and cognitive issues with little...

Uh. No kidding. Not the cover, though: http://content.time.com/time/magazine/0,9263,7601700126,00.html. Behavior: Mass Hysteria: http://content.time.com/time/magazine/article/0,9171,878745,00.html Also found this from the time of the epidemic, August 1955...

I sent this, in case it inspires anyone:

https://www.meaction.net/2019/06/14/congressman-jack-bergman-becomes-champion-for-me/ Always good to thank those fighting for us. They are rare and appreciation always leads to more advocacy.

Shies away from debate almost immediately and censors all comments on the actual post. Good job, hue manatees!

So... expansion is happening without the planned assessment of its efficacy? There was a preliminary assessment a few months ago that showed the project fell way short of its expectations but haven't seen much about the final assessment since. It's clearly a complete failure and it's still going...

Both of which seem to have a possible cause in latent infectious agents, possibly enteroviruses, and amyloid plaques being a protective response from the CNS to a pathogen. Some things seem to be converging. It's almost like the immune system still has many mysteries left to reveal, contrary to...

With a commenting system but systematically censoring all comments. Weird and weirder.

But it would never be integrated into medical care, being obvious quackery and all, so basically it's "effective", whatever that means, except it can't ever be used properly, but it's still recommended. This is also an issue with PACE, where there was supposedly this "super training", very...