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As I mentioned in another thread on this topic, I had a massive bilateral unproved PE in 2006--four years after I was diagnosed with ME/CFS. But in the 17 years since, I've not heard of anybody else who has had even DVT despite being hyper attuned to this topic and spending 20 years on various...

I had unprovoked multiple bilateral pulmonary emboli in 2006. The hematologist did a thorough work up but could not find a reason for why I had the clots. As it was my second episode of a pulmonary embolism (the first combined with DVT following knee & ankle surgery in 1998), he recommended...

Diane Shipley: Knowledge of Missing Out Absolutely LOVED this piece. She talks about having ME/CFS and what it was like watching able-bodied people whine about what they were missing during lockdown while she (and the rest of us sickies) have been missing out for years. It so captured my own...

Calling the eating/feeding issues in ME/CFS an "eating disorder" strikes me as about the same as calling ME/CFS an "activity disorder."

Didn't they also do a patent app for Imdur? I remember we all talked about this back in 2018 or so. Some of us tried it to no avail. I know there have been a few studies of Sildenafil over the years, but I can't remember the findings (which means they probably weren't too promising). But I...

It doesn't seem like anybody has mentioned the Karnofsky Performance Status questionnaire. Of all the questionnaires that the Solve ME/CFS patient registry uses, it's the only one that has felt at all relevant to my day to day functional capacity. It asks questions about function and how much of...

I've been meaning to add to the chorus of people saying that standard, more extensive neurophsychiatric/psychometric testing will often pick up the cognitive problems pwME/CFS experience. When I first applied for disability benefits through Social Security, I was immediately packed off for a...

From a memoir piece in Guernica written by a doctor who treats chronic pain. He uses the hardware/software analogy. Feels like what's missing here is a discussion about regression to the mean?

Fair enough. Though I suppose an argument could be made that I am renumerated with disability benefits. Not that it would be a strong argument as disability benefits are premised on meeting my physical needs regardless of my "doing" anything (though without doing the considerable work associated...

A decade ago or so when Facebook asked me about my work, I listed this: (That was back when I was still well enough to manage the odd yoga pose or PT exercise) Nice to see some academics acknowledge what most of us already know: being sick is a lot of work.

It would be interesting to see how step counts correlate with, say, the Karnofsky scale (the only questionnaire Solve ME/CFS Initiative is using that seems at all relevant to my daily life) as that asks questions related to other types of activity (how long can you be out of bed, etc.). At the...

Or they could just use old-fashioned pedometers. Are blinded actigraphs a thing?

I think this might be the first time I've ever seen actigraphy used in a chronic pain study. Finally. Now to work on the whole "correlation isn't causation" thing... In this case, is the increased activity causing the better sleep or is something else causing better sleep that is then...

I have been having this exact thing! The last three Octobers I've crashed--the crash in October 2020 was the worst crash I've ever had and was otherwise completely unprovoked. During that crash, among other things, I had a few times where it was as if the biology of sleep just stopped. Twice I...

Just wanted to note, as I did in this thread, that standard psychometric testing can demonstrate cognitive impairment in PWME (or, at least it did in me--and I was still well enough to drive back then). Though having simple measurements for cognitive dysfunction akin to an old fashioned...

It's still a very blunt tool but I have been using an old-school pedometer clipped to my underwear for about 8 years now and it seems to be a measure of not only how *many* steps I'm taking, but *how* I'm taking them. When I first started using the pedometer, I noticed that on days when I felt...

The exercise in question is called the Brandt-Daroff exercise. I have had annual bouts of BPV since July of 2000 and do a modified version of the BD exercises whenever it starts acting up. I sit on the edge of my bed with pillows on either side, turn my head 45 degrees in one direction (say to...

And maybe Dr Selinger can explain that this is not a disease of feeling tired? :oops:

That was precisely what they were doing.

So, uh, how did the patients rank it?