This new thread on the hospitalist subreddit about a person with LC/ME is one of the most upsetting I’ve ever seen. Truly frightening.
Asymptomatic spread is very common— around 20% of covid cases are asymptomatic it seems. So when and where pwME mask is germane to both!
When I referred to many pwME not taking covid precautions, I wasn’t basing that off the results of this poll but my observations of pwME on...
Personally, I find it really dispiriting and alienating that so many of us are fine not making an effort to hinder the spread of a still-deadly...
From Janet Dafoe on twitter a week ago: Whitney is working with Josh Leisk and seeing benefits from following the protocol.
There seems to be substantial, growing interest in this alt-med protocol among pwME if my Twitter is anything to go by—and not just among the...
That makes sense. And I can relate—I found Putrino’s thread about visiting a very severe pwME in their home very affirming and moving. My...
Am I alone in finding Putrino’s Twitter threads a bit hollow and performative feeling? They contain little insight beyond “Them Bad. You Good.”,...
I think it’d be helpful to have examples of this tactic to cite from the history of science (of researchers portraying themselves as dispassionate...
Browsing Reddit forums where physicians talk amongst themselves has impressed on me the considerable influence that UpToDate has on US medical...
It’s worth noting that Whitney wrote a near-identical blog post to this a couple years ago in the wake of a major legal defeat for women’s...
Absolutely. If you ever get around to checking out their site, I’d be interested in your opinion of how they fare on this front. I think they do...
Many of the treatments ALSUntangled reviews have little to no clinical trial evidence either. The way they contextualize the lack of evidence, or...
Occasionally, I read other disease communities’ online fora to broaden my horizons. That’s how I came across ALSUntangled—an org likely to be of...
With the press consistently framing this study as proof exercise is harmful for people experiencing PEM, it wouldn’t surprise me if our friends in...
A few months where, from what I remember, they’d happen around 2-3 nights per week
I’m very sorry about your relapse. I don’t have treatment suggestions, but I wanted to add that I’ve also experienced myoclonic jerks like what...
Whether it’s Ampligen, LDN, or CoQ10, it’s not uncommon to see pwME attribute the range of outcomes from popular treatments to (theoretical)...
Exactly. For context, the Twitter user in this screenshot is the main person behind this org. They frequently say disparaging and ignorant things...
Merged thread A few months ago, the New Yorker published a piece about ALS—specifically, about the debate among patients and regulators over...
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