#longcovid

🧵 Another excellent blog by Fred Rossi who is well worth following

"The Patient Who Isn’t Supposed to Exist"

Nominally on the recent, controversial WIRED article but the points are pretty general.

"So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way."

Across the U.S. and around the world, politicians have falsely declared the pandemic “over,” and they continue to ignore Long COVID despite its impact on society. There are still zero approved cures for it, myalgic encephalomyelitis (ME), or other related chronic diseases; patient-led advocacy and activism are as important as ever. Advocates emphasize that a broad range of strategies — going beyond efforts aimed at national governments — is needed to secure better care and outcomes for patients.

Federal policy changes can have big impacts, but are often slow, and may not affect other systems and structures that chronically ill patients rely on, such as healthcare provision or access to personal protective equipment like masks and hand sanitizer. Strategies like state and local advocacy, provider education, mutual aid, and direct action can sometimes produce change more quickly and can strengthen broader care structures, all while building community.

There was always something. If my fatigue was less severe one day, I would get a migraine instead. If I had a pots flare up, i wouldn't be thinking as much about my ibs.

No doctor or medication really helped me that much or gave me any answers.

The major changes in my illness (eg the beginning, and the times it got significantly worse) all occurred during stressful or painful periods of my life.

The numbers in my blood results rarely aligned with how I felt in my body. eg, as a teenager I had severe iron deficiency. After taking iron supplements for months, I felt no different. Still tired, weak and headachy. But my dr told me my iron levels were back to normal. I remember asking her, 'what's wrong with me, then, if my iron is fine? I feel the same as when it was dangerously low' and she just gave me some bullshit answer. The same thing happened with a b12 deficiency, and my inflammation markers at the peak of my illness.

I was terrified of long covid and me/cfs before I got it. Most people I knew had never heard of it, but I knew what I had as soon as it started.

I got POTS after a year of dating someone who had severe POTS.

I have a significant trauma history (not required for neuroplastic symptoms)

I'm a people pleaser (used to be, anyway) and a perfectionist

I was never allowed to rest as a child, and that translated into an adulthood where I rarely allowed myself to rest without feeling really guilty about it.

Coolist on youtube... luxury hotels...travel vlogs.... c0vid brain damage.....no focus.... team Canada constantly cheating... also norway.... also usa....

wtf----neut-rinos are weird unexplained phenomena

Cytherea prnstar send info to Instagram followers - I was blocked ? by the sailor girl and her mom lol.... GIFs funny truth/s cute pets - people let their parrots fly free cute videos - wtf eagle ate your bird wtf really bad luck. few years old print screens , image dump,