Imagine dying from a disease BECAUSE it "doesn't exist" and "doesn't kill." Only with #MECFS. Shameful!

The #MECFS community lost another Blue Rose Angel this past weekend. Sammy was from Australia...may she rest in peace. 💙🙏💙 This has GOT to stop!! #GreatestMEdicalScandal #FundMECFS #CureMECFS

ME/CFS is not fatal. And yet people keep dying of it. Including young people. We see them happen regularly. What does it say about the medical profession that people keep dying of a disease that is not fatal? And that almost none of them cares?

Sammy said and then left :( Is there going to be a #SammyInquest? How many inquests do we need before we start caring for #MECFS patients?? #LongCovidKids #LongCovid NIH NINDS

I’m beginning to think we need active fundraising to educate gastroenterologists first. The good ones are worth bottling; but so many seem diabolical in their treatment of young women with difficult to understand illnesses.

🌵Our next support group takes place tomorrow! What: Sharing the Collective Wisdom of the Chronically Ill When: Thursday, September 5, 1 pm MT / 3 pm ET Where: Zoom, register here bit.ly/3AScHbr #MECFS #pwME #MyalgicEncephalomyelitis #LongCOVID #fibromyalgia

You must rule out PEM before endorsing HBOT for your Long Covid patient. HBOT can exacerbate PEM & has the risk of permanently worsening their health baseline. If a patient with PEM still wishes to try HBOT, they may do so, but they should be warned about the associated risks.

Neurologist Mom Ziyad Al-Aly, MD Or, in my case, 4.5 yrs ago...and counting. I find that long covid likes to throw in a new symptom every so often.

I’m currently working on creating a survey with key symptoms and patients’ reactions to medicines or supplements that target those symptoms. My goal is to identify similarities and differences in clinical responses. However, is there any issue with the legal basis for creating