A reminder of what the global research output on #MECFS looks like, when compared to other diseases 😳 In the US at least, each of these other diseases now has a lower burden (measured in DALYs) than ME/CFS - and yet ME is barely off the floor. #MECFS #LongCovid

The ME delivery plan is just embarrassing. This is what happens when people with no vested interest are in charge of driving change. No urgency and no real care.

As a doctor with ME/cfs, this is probably the worst disease that exists. That is all. Reddit post on #MECFS reddit.com/r/mecfs/commen…

I’ve said this on many occasions: talking about ME, Long COVID and disability feels very much on par with homophobia of yore. It’s deeply stigmatised. RIP.

Today is #SevereMEAwarenessDay The before and afters of life. I was soo cool once upon a time. God I miss being awesome and doing amazing things. Fuck ME/CFS and Long COVID.

Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist… See photo below:

“At least it’s not cancer.” People say that to us like it somehow comforts us or makes things easier. Yes most of the time chronic illness won’t kill us. But slowly losing pieces of yourself to a disease that never kills but never lets you live is its own kind of death.

No matter what happens in my remaining years, I will never ever understand why severe ME was dealt with in the way that it was. I will never ever understand why this was dismissed.

Jeremy Jeffs Powerful work. It’s greatly appreciated. We need more of this. People must understand; there are worse fates than death. I’ve lived a big life, with all its ups and downs. I’ve seen cancer kill. I’ve seen abuse and suffering. I’ve seen disease. And I’ve spent six years studying

Decades of research and medical neglect means that ME, and now Long COVID, still have zero FDA-approved treatments 💊❌ Zero. By contrast, other major diseases (now with lower total disease burdens) have dozens. Hard to recover without treatment... #MECFS #LongCovid #IACI

Erkenntnis des Tages: in meinen 15 Jahren Berufsleben als Sozialarbeiter habe ich nicht erlebt, dass meine Klient*innen von Behörden und anderen Institutionen so scheiße behandelt und allein gelassen wurden, wie ich jetzt mit Long-COVID und ME/cfs. Es ist zum Heulen.

“I wish you never find out how much you can live without” A comment I saw on a Reddit post of a mild ME/CFS patient asking severe patients how they can live without socialising or a job.

Please read this! Here is a doctor apologizing to Long COVID and ME/CFS patients for how they've been dismissed by the medical profession. He didn't truly understand until he got Long COVID: "I gaslit myself, pushed myself, gave myself the wrong advice "

Diewertje died yesterday, at 32, by euthanasia as a result of severe ME. Another one of us lost to this horrific disease in general indifference, including the indifference of many of our researchers and doctors who refuse to study and treat severe cases

Do regular people know that people commit suicide due to severe ME? Do doctors know?

Coming soon we have a series on our first PEM findings. Below: one patient's ACE levels before and after PEM Despite being for many patients the single symptom that prevents them from returning to life, PEM is not well understood. Our goal is to add much needed resolution

PEM series preview BH2 + BH4 decreased after PEM in our patient These cofactors are crucial for neurotransmitter synthesis and blood vessel dilation Depletion suggests oxidative stress overwhelms the system, possibly contributing to vascular, cognitive, and immune dysfunction