Thread by @jenbrea

Dear medical profession: please get your act together on this. It’s been a few hundred years. You’ve had more than enough time.

@AmerMedicalAssn needs to speak out against this behavior, for the sake of #LongCovid patients and for ALL patients.

Thanks.

nbcnews.com/news/us-news/t…

Those of us who became ill with #MECFS after other outbreaks or as sporadic cases knew #LongCovid was coming. There is no reason @CDCgov @NIH @AmerMedicalAssn or @NICEComms should not have also been—from day one—well aware, but for the profound, long-standing disinterest.

https://twitter.com/jenbrea/status/1238988538844033024

In 2016, I gave a @TEDTalks about what happened when my symptoms were dismissed as “just anxiety.”

@AmerMedicalAssn I called for doctors to be curious. To embrace a *different* set of values than the ones that currently guide the practice of medicine.

ted.com/talks/jennifer…

I said: “Even once the true cause of my disease is discovered, if we don't change our institutions and our culture, we will do this again to another disease.”

I thought I was talking about some future generation, not #LongCovid patients four years later.

When I see what doctors are doing to #LongCovid patients, I can no longer believe that #MECFS just “fell between the cracks,” that my community is an aberration. This is the medical system working exactly as it was designed.

This is the culture speaking loudly and clearly about what it stands for. Medicine is OK rejecting responsibility for the patients it cannot help. Medicine is OK to do it in a way that particularly screws over women.

Medicine is OK with failing to observe, with distorting reality, with obscuring whole categories of patients (i.e., new natural phenomena) in order to do this. Medicine is OK obstructing science in the process.

That’s the only conclusion I can draw from watching the same outcome happen over again and over again without any objection, any sign that doctors are cognizant of the harm they routinely cause. @AmerMedicalAssn the burden of leadership on this should not fall to sick patients.

It’s not a “few bad apples.” This is the modal experience of patients like us. If you don’t fit into some ridiculous ddx algorithm doctors cannot observe what is happening right in front of them.

I’m tired of watching people die and lives be ruined by this.

Enough.

If you’re just tuning in and are asking “What is #LongCovid?” read this beautiful, compassionate piece by @edyong209 theatlantic.com/health/archive…

For insight into some of the early scientific endeavors and @NIH plans, see this piece by @brianvastag and @rndNumGen washingtonpost.com/health/could-c…