Listen my children and you shall hear
How a proactive patient, informed and with fear
Can still get the COVIDs when warned by his gear
By nonetheless thinking "It can't happen here." Snapshot of a positive antigen test
I circulated this to a college alumni circle & @PaulFLevy urged me to fess up broadly. It's embarrassing & true & underscores that THIS SCIENCE STUFF ACTUALLY MATTERS. And there are idiots who are unable to avoid endangering us because they get hired by slacker companies. OK:
I travel with a CO2 meter, to detect when I'm in spaces that have stupidly bad ventilation. Brought it with me Thursday on a road trip to visit college friends.
CO2 <1000 is generally considered good ventilation, and when I see 2,000 it means either the facility is unable to bring in fresh air or they're just not interested.

Or they could be just stupid, but we'll get to that later.
At our Thursday night hotel, a Sheraton Four Points, our meter said >2,200. "Dang," I said, "the AC must be set to recirculate, not Vent."
But there was no available adjustment in the room.
I went to the hotel desk and asked. The site engineer said "Yeah, we have it all set to recirculate, to save energy." [Insert hair-on-fire emoji.]
But because we were bushed, WE ELECTED NOT TO EVACUATE.

We have seen such bad air before and not gotten infected.

Bad, bad anti-science thinking.
So I sat in that recirculating cesspool of air for 12 hours.
The next day before checkout (and before any symptoms) I talked again to the engineer, who responded to my CO2 meter data by saying "Look we have carbon monoxide alarms all through the hotel and they never go off."

MONoxide. Genius air quality guy.
The evening after arrival (2 days after exposure) a cough starts. Next morning rapid test confirms it.

Nothing's as ironic as a nerd (me) with an instrument whose warning he chooses to ignore, right?
The corker: today I reported it all to the county health dept, who thanked me and said "If we get any more reported cases we'll go suggest that they change it."

I said "There's no standard for ventilation??" "No, sir, there's not."
We truly are on our own, folks. YOU truly are on your own. To inform ourselves, be aware, and most of all to TAKE ACTION when we get warnings.

And I say that straight into the mirror.
I'm writing this 5 days after exposure; I'm mostly ok. Yay for Paxlovid; no I didn't get "Paxlovid mouth"; yay also to cough medicine, because aside from exhaustion, cough's been my main annoyance, and CVS solved that. We're heading home tomorrow.

IFL Science. Don't ignore it.

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More from @ePatientDave

Apr 1
@BeLikeLight @RemRunner @TEDTalks @TEDx Hi Julie! I'd be happy to discuss the potential blind spots in that earnest perspective. For starters, if they talk to *doctors* all day, does that mean there's no value going to conferences where doctors speak?

It's not a snarky question. Really think about it. (cont'd)
@BeLikeLight @RemRunner @TEDTalks @TEDx There's a chance the implied message is "I doubt there's anything new I could learn from any patient I haven't met." That is (honestly) a sure-fire way to become out of touch and get blind-sided.
@BeLikeLight @RemRunner @TEDTalks @TEDx I'd be happy to engage in a dialog about specifics. Has this doc heard about what I call "superpatients" - patients like @Doug_Lind_Say who designed his own surgery, @HugoOC who hacks his ICD, the whole #DIYPS / #WeAreNotWaiting T1D community, or T1D pts who pre-bolus, etc?
Read 11 tweets
Mar 30
ANNOUNCING A BIG DEAL, in a free (but real) test. Through Sunday:

@PocketHealthHQ, where I'm Chief Patient Officer, is testing an exciting new product to let patients & caregivers retrieve imaging records and reports from ANY PROVIDER IN NORTH AMERICA. Help test it./1
They're offering early access to friends & families of employees to try out this new product & provide feedback on their experience.

Fill out the data request form below (takes about 5 minutes). All personal information and records will be kept strictly confidential. /2
When the test period starts we'll send a request to your provider to transfer your imaging to PocketHealth. We'll notify you when it's ready to access in the PocketHealth cloud. (Of course timeline depends on how quick they are!) /3
Read 7 tweets
Mar 14
@pheski @KDrum @PHEski Since my glaucoma diagnosis a year ago this has been a major complaint. (short thread) First: epatientdave.com/2021/12/21/why…
@pheski @kdrum I was aggravated by how hard it is to do this essential thing (instilling eye drops) (why haven't they fixed this???), then further aggravated a few months ago upon discovering this 2017 @Marshall_Allen @Propublica expose of the eye drop business. propublica.org/article/drug-c… 2/
@pheski @kdrum @marshall_allen @propublica The solution to this, and much more, came when last year I found a solid e-patient community, FitEyes. Here's a grab from my first link above: 3/
Read 10 tweets
Apr 8, 2021
@JFreemanDaily @SusannahFox @gfry Thread:
Here's the last edition (2015) of the Pew Health Tips page summarizing Susannah's research, before Pew stopped publishing it. pewinternet.org/Commentary/201…
/more
@JFreemanDaily @SusannahFox @gfry An interesting question is why someone's ASKING you for proof that people aren't ignorant. Sounds to me like they're not looking to improve care, but are for some reason looking for excuses not to modernize ... ironically by being ignorant.
dave.pt/googlemug
/more
@JFreemanDaily @SusannahFox @gfry As for surveys: "S4PM Survey Shows People Want to Collaborate with Their Doctors and Co-Produce Their Clinical Data" participatorymedicine.org/epatients/2016…
/more
Read 6 tweets
Dec 17, 2020
Hey patient activists - do you know of dangerous errors in someone's medical record, the kind that can cause harm or diagnostic errors? Want to help improve that?

Orientation for developers Thursday 1pm ET; public (YOU) is welcome. Blog post:
confluence.hl7.org/pages/viewpage…

/thread
The @HL7 #FHIR Patient Empowermt group has an APPROVED PROJECT to define data standards to submit correction requests through apps.

Sound like a worthy project? Our first "Connectathon" is in Jan, & Thurs 12/15 @ 1pm ET is an orientation for software devels. ALL INVITED. /2
Patients & non-coders, all are welcome; HL7 meetings are all fully open. Beware - this is a technical meeting - but it will be great if a few dozen patient voices show up with moral support for this important project!

GoToMeeting 1pm ET Thurs: global.gotomeeting.com/join/322275573 /end
Read 4 tweets
Aug 31, 2020
.@AnthemBCBS I'm pretty sure you hope somebody will be able to undo the erroneous "noncompliance" letter you faxed my doctor because yr computers apparently have REALLY bogus logic in them.

46 minutes into this call so far; this 3rd lady doesn't know why they xferred me to her. Image
Note: none of the four response options he can send you includes "Sorry, Anthem, you're wrong - remove the false 'noncompliance' assertion from his record."

You will be looking into this & correcting my record, I'm sure. I don't mess around w malprogrammed medical records.
Please note, too, @AnthemBCBS, that none of the agents I spoke to on your Rx member services line had any clue how to even FIND OUT where such a letter would have come from.

Let's talk & get this sorted out.
Read 5 tweets

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