Thread by @keikoinboston

1. If you’ve enjoyed/found my threads useful and have some disposable income would you consider donating to OMF? They fund research that will help those of us with #MECFS #LongCOVID #PTLDS & #fibromyalgia.

https://twitter.com/openmedf/status/1530981235778113538

2. My life has basically been on hold for over a decade since I first developed ME/CFS. It took me until 2020 to get a diagnosis. Delayed diagnoses like mine are common because there are currently no labs that doctors can order to definitively diagnose ME/CFS.

3. Diagnosis is by process of elimination where doctors run tests for other possible diseases and rule them out to narrow it down to ME/CFS.

4. Even if you’ve been diagnosed with ME/CFS, there are currently no FDA-approved treatments, just a hodge podge of meds that some doctors & patients are experimenting with off label (meaning they’re approved to treat other things, but not ME/CFS) + nutraceuticals.

5. “Treatment” for ME/CFS just aims to help with symptom management. Doctors can’t prescribe anything to treat the root cause since we still don’t know what that is and there is no cure. 😢

6. Some people recover fully, some may recover and relapse in the future, and others like me are sick for decades.

It’s very much not a great way to live but we’re all limited in how much healthier we can get because ME/CFS research has been underfunded for decades.

7. Anyway, here are some fun threads I’ve written in the past.

This one is about the origins of Japanese curry 🍛 and chicken tikka masala.

https://twitter.com/keikoinboston/status/1117614072076357632

8. This thread is about a video of a xylophone in a forest in Japan that went viral without attribution. It’s a 2011 TV ad for Docomo’s Touch Wood SH-08C phone.

https://twitter.com/keikoinboston/status/1340866763337179137