Christina KochMar 11
Christina Koch

By Otto Kolbl and me:

Why were we so unprepared for #LongCOVID? Because long SARS was largely ignored and psychologized. Researchers failed to make the connection to #MECFS, #POTS, #SFN, etc. — despite having all the data.

German version coming soon!
https://ottokolbl.medium.com/we-ignored-long-sars-and-let-long-covid-suffer-the-same-fate-336372fe39d7

SARS’s Long Shadow: We Ignored Long SARS — And Let Long COVID Suffer the Same Fate

Christina Koch, Otto Kolbl

Medium
Mar 10 at 6:19pmTusky
Show threadDoug 🌈🇨🇦 Mar 10
@juchti probably the same reason we didn't think lupus was real.
Show threadLyndsay BarwellMar 10
@juchti not only are ME/CFS and long covid clinics not testing for co-occuring conditions like POTS and still focused on services only from OTs and physios, they are closing long covid *and* ME/CFS clinics in the UK. I know if you can resolve high heart rate, it does make a difference even if there is still fatigue. If you can screen people for symptoms and advise them early it makes a difference. But this all seems to continue to be ignored.
Show threadLyndsay BarwellMar 10
@juchti also I have recently found out there are very high rates of fatigue after sepsis, probably similar to SARS, and this is completely unacknowledged on discharge from hospital.
Show threadChristina KochMar 10
@treehugger Will reply more in detail tomorrow! Yes, I am aware of the sepsis patients with fatigue (and often they fulfill ME/CFS diagnostic criteria). It's a shame that all of this is being ignored and specialized clinics are closing (though some never made it beyond GET and CBT)
despite the fact that numbers are rising! People are desperate!
Show threadLyndsay BarwellMar 11
@juchti indeed. Without clinics, there is nothing to even improve. I was shocked to learn Manchester doesn't have one. And mecfs fits in nowhere else. I have long covid, as does my husband and now his child has deferred uni due to post sepsis syndrome! Feels like we're going backwards despite all the advocacy and promises from government.
Show threadLyndsay BarwellMar 12
@juchti I'm intrigued by, "Anatomic issues, particularly in the spine, represent a third contributing factor." I have spinal sclerotic lesions, only discovered because I had concerns about colon cancer and then they were very concerned about blood cancer (I'm fine). I have no idea how common benign sclerotic lesions are or how often they cause other symptoms like pain. I don't have back pain but I started to when I couldn't keep up my weekly physical activity that strengthens me.
Show threadLyndsay BarwellMar 12
@juchti that could all be coincidence, sore backs are common. We just don't know enough.