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This may be violating the "no politics" rule so I understand if it gets deleted but I do think the union movement needs to think beyond trades and work. There is solidarity to be had in more situations than just labor. And there are a whole lot of us who are excluded from labor for one reason or...

Lenny Jason probably came up with the best "screening" tool to distinguish depression from chronic illness: simply ask a patient "if you felt well tomorrow, what would you do?" Someone who is depressed is almost invariably going to shrug and mumble something like "I dunno." Someone with a...

I don't think cost is the problem. My Tri-Axis pedometer, which seems to be more accurate than, say, a FitBit, is only about $25. I wear it clipped to my underwear 24/7, except when I'm bathing/showering. The one I've got now has lasted me since 2018. The only ongoing cost has been a 2032...

I don't disagree with any of this but, to be fair to @sarahtyson, she might say the same thing about us. She might argue that we were dismissive of the technological and institutional infrastructure challenges that she outlined in this post in the 20 years she said she had been trying to...

I have severe ME/CFS and for the most part, step count variations can be pretty significant when you go from 600 to 50 (and vice versa). What's been interesting is that over much of the last year, I've been having an inexplicable improvement. I'm still pretty damn severe (completely homebound...

As an American, I wanted to add a little nuance to the discussion. If we want to make, say, the Sacklers the scapegoat villains in all this, better them than the usual marginalized people imho. That said, I can understand why they might be a little confused about why they are being singled out...

And THAT is why we have BPS medicine: to give providers a way to not have to deal with the discomfort that comes when they can't actually do much for their patients (which, unfortunately, is more often than we'd like to think it is). Instead of teaching providers how to manage those very real...

Thanks for sharing your experience. It's one of those things that because we don't understand the mechanism of action in ME/CFS, it's been difficult for me to know if it's related to that or if it's something else entirely. I'll talk to my PCP/GP about MCAS. Alas, I cannot take NSAIDS as I'm...

Can't help but grimly chuckle where the doctor at the end of the piece has to scold women about not eating sweets and making sure to get 7 hours of sleep at night. As if I have any f***ing control over how much sleep I get at this point...:banghead::arghh::cry: That said, given my own...

I'm perimenopausal and my answer to the poll so far would be one that's not available: both. I started having late/missed periods in 2019. After my first missed periods in November and December 2019, I had a few weeks of functioning better than I had in several years. My IBS that began just...

Oh also I should note that I'm not as concerned necessarily with the term "psychometric." My understanding is that it simply means a way of measuring in psychology. While I've not seen specifically what psychometric tests are being used for this study, the psychometric testing I had when I was...

@sarahtyson I too want to welcome you to the forum. While we can be a pedantic, curmudgeonly bunch, we're all about the science at the end of the day--which is what it sounds like you're all about too! :):thumbup: While wearables are not perfect or purely objective, they certainly can provide...

Thanks, @SNT Gatchaman . That's helpful. Are WMHs the same as the so-called "Unidentified Bright Objects" that pwME have been seeing in MRIs for the last 40 years? The UBOs have always sounded like they were simply incidental findings whereas the WMHs sound, perhaps, more significant. I can...

Please forgive my my layperson's ignorance, but did you mean WMH are CSF/fluid spaces? In the radiologist's report on my MRI, he stated that my WMH were what he thought would be consistent with sequalae of chronic migraines or the beginning of chronic small vessel ischemic disease. And when I...

I'm not sure if this is the correct thread in which to ask this, but @SNT Gatchaman's post yesterday reminded me of this thread and that I wondered if, with these studies of reduced perfusion in pwME, other patients are seeing things like White Matter Hyperintensities in MRIs. I just had an...

Democracy Now!: The Long Haul: Millions with COVID Face Chronic Illness as Biden Declares End to National Emergency Not the best segment I've seen on Long Covid and ME/CFS (he describes the name ME literally, implying that it really is about brain and spinal chord inflammation). But he does...

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 I have sometimes wondered if certain frequencies have some sort of effect on whatever mechanism of action is going on in a crash. Can't say the...

Indeed. It took forever for someone at SSA to explain that to me. Initially they told me they thought I was eligible for additional benefits--which sounded batshit crazy as SSA is always trying to find ways to limit benefits. And, of course, had I turned out to be eligible, I would not have...

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 getting picked for a full assessment.

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 form that asks about 5 questions (i.e. have you improved? has your doctor said you can work? etc.) and a response a few months later saying they don't...