Democracy Now!: The Long Haul: Millions with COVID Face Chronic Illness as Biden Declares End to National Emergency [MEDIA] Not the best segment...
Well...whenever I'm really badly off, I always crave Enya. Or certain Tibetan Singing Bowls. I've never really known what to make of that. Though...
Indeed. It took forever for someone at SSA to explain that to me. Initially they told me they thought I was eligible for additional...
Oh absolutely! Every time I see an envelope in the mail from SSA, my stomach reflexively clenches. And I've probably just been very lucky in not...
I'm on SSI and it's been hit or miss. I've never in the twenty years since I was approved had a full medical review. I usually just get the short...
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...
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...
Diane Shipley: Knowledge of Missing Out At the start of lockdown, a friend texted that a party she was looking forward to had been canceled. I...
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...
It doesn't seem like anybody has mentioned the Karnofsky Performance Status questionnaire. Of all the questionnaires that the Solve ME/CFS patient...
I've been meaning to add to the chorus of people saying that standard, more extensive neurophsychiatric/psychometric testing will often pick up...
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...
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...
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...
It would be interesting to see how step counts correlate with, say, the Karnofsky scale (the only questionnaire Solve ME/CFS Initiative is using...
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...
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...
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...
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