Thread by @HerbertoDhanis

I always knew there were diseases we had no cure for, but developing #LongCovid opened my eyes to a world of suffering I had no idea existed. I didn’t know what #MECFS was, and with this name, I could have never imagined such suffering.

#MEAwarenessDay

#MECFS in its very severe form is probably one of the most debilitating diseases in the world. It is particularly cruel because it considerably limits energy and “punishes” those who step out of their energy limits by worsening symptoms, sometimes permanently

Doctors and researchers who care, have compared it to late stage AIDS or kidney failure, in which the patients barely exist and typically die after ~ one month. However, patients w/ very severe #MECFS live permanently like this, and the disease has been coined “the living death”

I share below the brave video-project of a patient documenting his day-to-day life. Do to the severity of his illness @AnilvanderZee has been living mostly in isolation for 10 years. Sobering and extremely courageous report.

Finally, I never expected something like this to exist, but what I expected even less is to learn how it has been ignored by the medical/research community. How these patients have been psychologised in the worst way possible, in face of such a debilitating disease.

One field in particular, too close to mine, has actively participated in the oppression and psychologization of these patients. It’s impossible for any field to say, “in the absence of any observable structural or organic dysfunction". We don't know about so many...

potential dysfunctions (yet). That's why we have research! It's time for everyone to open their eyes to post-viral conditions like #MECFS. These patients have waited for treatments for far too long. No more psychologisation, no more dismissal.

#MillionsMissing #MEAwarenessDay

If #LongCovid brought anything good, I hope it's research, attention and hopefully-enough treatments for both these conditions!