Thread by @jenbrea

Honestly? Many researchers mainly tap into their own self-sourced ideas. Very few really do the “field work” required to formulate the most interesting and relevant questions. The idea of researching patients without actually listening to patients is bonkers to me.

https://twitter.com/kathrynsbach/status/1433088594747527169

In reference to:

https://twitter.com/edyong209/status/1433044687946932224?s=20

This is a large part of why the research is so slow. Yes, funding is an issue, but in the #MECFS community, major possible contributors to illness go discussed for 10, 20 years but no researcher touches them. I’m thinking of mold exposure and MCAS as big ones.

I know several people living out of cars, tents, etc. because they cannot tolerate buildings and yet nowhere on any researcher’s top twenty list is a question that remotely touches, “why does that happen?”

I see almost no one trying to understand the underlying connections between #MECFS #POTS #MCAS #EDS #fibro etc. It’s mostly, “Here I am in my corner. What? There’s another condition with 80-95% symptom overlap? Can’t hear you. That’s someone else’s problem.”

There are major, structural problems in the way research is done that have nothing to do with funding, and we’re going to repeat them all with #longCOVID

Also, there are a lot of patients on Twitter that are more widely read than most researchers. Most researchers read within their *scientific field* (not all papers about a given diagnosis) and it is rare that I find people who are familiar with research in adjacent diseases.

So if there question has already been asked in an adjacent disease, or if they have identical findings, they may not even know this…

I recently had a research suggestion and brought it up with a researcher, citing findings of another researcher in the same collaborative, and that researcher had no idea he what I was talking about until I REMINDED HIM of his colleague’s findings.

I want to be clear: this is not every researcher. There are many excellent researchers studying this diagnosis and very nearly all of them (I’m leaving the BPS folks out of this!) care immensely for this community. But blind faith/hope is getting us nowhere.

We need a radically different level of patient leadership. I don’t know what that looks like but as ever, the HIV/AIDS activist community provides many excellent and important models, as does @patientled

Rant continued, here😂

https://twitter.com/jenbrea/status/1433462473089191937?s=20