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HRT is a tricky one for me. Because of my history of blood clots, my gyno refused to prescribe even the Estradiol patch despite the fact that on the front page of the American College of OB/GYNs it explicitly states that the patch does not raise the risk of clots because it bypasses the liver...

Ah, yes. I sleep through the night maybe once or twice a year going on 15 years or more now. And perimenopause has just made it worse. I've had two occasions where I've gone 48 hours without sleep. Like the biology of sleep just stopped. Lots of nights of only 1-3 hours (and not even necessarily...

I've written in an earlier post that I experienced an improvement in my symptoms while on low-dose heparin. But like you, it was part of a number of treatments and it's hard to disentangle what was causing what. And I, too, am following the microclot/anticoagulate line of enquiry with great...

Why do these people think that I give a rat's f*** about what bubble I fill in on a questionnaire?! What I care about is, how much time can I spend out of bed? Can I take a bath on my own? Can I clean my own home? Can I leave my home? Can I work? They believe this whole thing is a game with...

Isn't the brain, you know, sorta, kinda part of the body? Do they think if they throw in/separate the brain from the body it sounds, somehow, more scientific? o_O

Ah yes, I had forgotten about that. I have sensed over the years that we have a bit of a reputation for being "the mean kids" (not just among other patients; plenty of researchers with savior complexes who have come on here over the years expecting nothing but fawning gratitude have been shocked...

Yes, as an American I'm both surprised and a little embarrassed. What's going on with ME Action?! Solve?! Even, er, the Other Forum? I dunno. Maybe because S4ME has a more British flavor it hasn't reached more Yanks?

THIS is my main problem with sewing. The sewing bit isn't too hard for me. It's the cutting patterns out that absolutely floors me. I always forget how hard it is to spread out the fabric, arrange the pattern, pin it, and cut it. I've either got to crawl around on the floor or stand up to cut...

I actually just listened to Lisa Sanders's book Every Patient is a Story a couple of weeks ago. For the most part it was a very interesting look at how clinicians diagnose conditions. It was a sort of behind the scenes look at how providers are trained to think, though in some ways the book was...

OMG thank you for this link! I've spent the last half hour watching his videos and haven't laughed so hard in a long time. Laughed so hard it triggered a hot flash--though, to be fair, it IS the hot flash hour so... ETA: Okay, it's now been TWO HOURS of watching his videos. After my experience...

Is this the first group to do iCPET aside from Systrom's group? I've been wondering why nobody else was trying to replicate Systrom's iCPET and started thinking that maybe nobody felt it was worth trying to replicate.

If anyone is interested in listening to this article, it was recently Nature's "audio long read":

@sarahtyson Thanks for stopping by again to this thread and sharing your thoughts. It's really helpful for us as patients and, I think, for you also as researchers when we are all able to discuss the very issues we are all most passionate about. While I share your vehement hatred, @Hutan, of...

Facebook encourages one to fund-raise for their birthday. The first year they suggested it, I chose the Solve ME/CFS Initiative (which was also easy because they are a listed charity at FB) but didn't think much about it as I didn't think anybody would give anything. I was surprised when friends...

Thank you so much for this, @Grigor. I'm going through the worst, most sustained crash since The Great Crash of Autumn 2020 and it's been rough. Your encouragement at the end to hang on was what I really needed to hear. And as others have said, this is a truly superb video. You are very...

You may remember Adam Mastroianni from such threads as this (about why peer review is crap) or this (about how people believe things could be better). But he recently posted an appeal to join his secret science society (that's not really secret): It's a great follow-up piece to the peer review...

I know I've already mentioned my own experience with clotting and anticoagulants here on the forum, but just in case anybody new is reading this, here's my N=1 experience with ME/CFS and Enoxaparin sodium.

So I take it these were patients with provoked PE, like surgery or air travel or something? Or did they include patients with unprovoked PE? Would that matter?

This is true but they also usually involve a paid union organizer (the Amazon warehouse union may be the exception that so far proves the rule). And in the case of the chronically ill, an organizer would be even more necessary. That said, any union is going to see our concerns as rather niche...

Ok, I'll go ahead and have a go at arguing (tentatively) for the pro-PGD position as I think currently the discussion in this thread is fixating on the grief part and missing the Prolonged bit. In 1997 I lost a family member abruptly. The loss was entangled with a family drama worthy of an...