Jo
banner
sepfieldpatient.bsky.social
Jo
@sepfieldpatient.bsky.social
Chronically ill (CVID, adrenal insufficiency, autoimmune diseases, and the rest), sometimes a maker of things…
Reposted by Jo
My fave is when they call it "pacing up" your activity 😭
December 17, 2025 at 8:32 PM
Reposted by Jo
I'd name and shame, but quite clearly none of us would recognize literally any of these people, because they don't recognize us :)

Still, I recommend clicking on the protocol itself and branding those names into your brain. And when you do, if any of them reach out to you, let them know what's up.
December 17, 2025 at 8:01 PM
Reposted by Jo
Those who designed the protocol are also unfamiliar with PEM, though they claim to measure it. They seem to believe you can spot PEM by asking subjective effort questions during activity, despite the fact that PEM symptoms have a characteristic, often 24hr delay between trigger and onset.
December 17, 2025 at 8:01 PM
Reposted by Jo
In a real study with "Zelen design", researchers obtain informed consent from subjects after ✨randomization✨.

However, in THIS study, they're only obtaining informed consent after ✨the study is complete✨. They have the audacity to call this a "modified" Zelen design.
December 17, 2025 at 8:01 PM
Reposted by Jo
"Deficiencies of vitamin B12, folic acid, copper, and vitamin E may lead to myeloneuropathy with a clinical picture of subacute combined degeneration of the spinal cord."

bsky.app/profile/rene...
"Deficiencies of vitamin B12, folic acid, copper, and vitamin E may lead to myeloneuropathy with a clinical picture of subacute combined degeneration of the spinal cord."
December 16, 2025 at 3:37 PM
Reposted by Jo
6. From these conversations, it seems obvious that public health needs to communicate the effectiveness of FFP2 masks, that vaccination is highly beneficial even if someone gets the flu, and that antiviral medication is available.

/end
December 15, 2025 at 1:01 PM
A significant portion of my family's flu cases, particularly while living in Adelaide, have always been in December. Multiple years my kids missed the last days of school with confirmed flu. One year I was in iso for Christmas (so fun to cook for everyone while sick then go hide in an outbuilding)
December 16, 2025 at 8:05 AM
It drives me spare that they keep marketing to immune deficient patients to push our loved ones to donate “for us” while refusing to provide a safe way for them to do so, thus putting the patients their supposedly protecting at risk…
December 15, 2025 at 4:34 AM
absolutely
December 15, 2025 at 4:06 AM
Exactly, women should be told: along with useful information & guidance/pathway.
December 15, 2025 at 1:19 AM
Thanks An, I’m sure it will be fine. Well, I’m not especially anxious.

I’m well aware things can go wrong and often do for me. But I’m more worried by Mr.Cough than the procedure
November 2, 2025 at 10:12 PM
Oh my. Hoping the pause is worthwhile!
November 2, 2025 at 10:08 PM