NYT - A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves

A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves
Zeynep Tufekci

https://archive.md/Y2Qdz

 

Breathe in, breathe out...

 

The medical establishment had not yet noticed, it still has not yet noticed, but it hadn't yet noticed it, too. In fact, it has literally rejected, belittled and mocked. And still does. Stubborn as they are.

But this article, man. It was pitiful on day 1, when this is how it all began, and nothing's changed, only it got more and more pathetic with time. It's pretty much literally how the very name and concept came about: medicine was MIA, so the patients did the work to get them started. Except they fumbled it completely. They're still MIA. At best. Working with the enemy at worst.

Not sure if Zeynep noticed that this is what we have been doing with ME/CFS for decades. And failed miserably, because although sometimes you have to hand people the first steps before they begin to work, here it's just not realistic. The problem is simply too hard, one of the hardest problems medicine has ever faced. The lack of mention in the article suggests: no.

 

It’s good she is bringing attention to Patient Led and the role of the larger patient community in moving the long COVID field forward.

However, it’s not that patients just thought up this “great” idea to start solving the disease. It’s more of a necessary back up plan that the patient community had to enact because the institutions and people who should be helping failed and are still failing to do so. That wasn’t really emphasized enough here.

 

ugh

 

Very good article that highlights the value of PLRC. I didn't know (or didn't remember) that they funded the study on PEM and muscles, which I think was a novel and important one. I'm very grateful for them because the big institutions still simply don't know how to help us.