I had Guillain Barre Syndrome, an autoimmune disorder where the immune system, while fighting an illness, also attacks the peripheral nervous system. There are bio markers & diagnostic findings to diagnose it. I had plasmapheresis & it worked, because of science, not a hunch.

Illnesses that can involve post-exertional malaise (PEM) include ME/CFS, Long COVID, post-SARS-CoV-1, Epstein-Barr virus/mono, post-Lyme disease, post-GBS, fibromyalgia, POTS & other forms of dysautonomia, multiple sclerosis, Lupus, & cancer.

Hey @stevenspohn, you’re not asking for a check, so I’ll ask for you. @mcuban check this out. Keep up the good work Steven. You should check it out too @BillAckman, @StevenACohen2 @NikeUnleash, @gatesfoundation @mackenziescott @MikeBloomberg @FidelityChrtbl @DAFGivingSummit

Jack - you don’t understand this paper, how any of the government research process works, or the history of what @MEActNet & @PlzSolveCFS have done. 1st, RECOVER is a government project to research Long Covid. Not MECFS, or AIDS, or MS, etc. It is a LC study. The 2 cohorts are infected & not infected. That’s it. They do not categorize MECFS in the surveys or biological testing. They ask about level of fatigue, exertion issues, quality of life, & dozens of other health assessments. 2nd, this paper says 4.5% of RECOVER participants fit the incidence rate and prevalence of post-COVID-19 ME/CFS based on the 2015 Institute of Medicine ME/CFS clinical diagnostic criteria. Again, this is a metric of the authors, not RECOVER. Finally, it’s better to say people feel MECFS orgs did their best to embed themselves into RECOVER and direct the type of work RECOVER would do. That happened from the start, as well as - •At the Senate HELP hearing, the speakers were all tied to MECFS orgs. •Same with the first RECOVER TLC Conference. •Two of the three patient representatives of the now defunct Long Covid advisory board were from ME Action and Solve ME. •At the beginning of all of this @PlzSolveCFS acquired the Solve Long Covid domains, didn’t put any LC info there, they just redirected traffic to Solve ME’s site. •ME org leaders, like ME Action CEO Emily Taylor, are active representatives in RECOVER. It’s much more convoluted than you understand & we all wish it was different.

The expression said, I just tasted something with my nose.

Every member of Congress and the Administration should be sure their eligible family members go fight in Iran.

If you are a researcher and feel the need to serially mock & ridicule patients, you need your own therapy. What a fucking joke.

Y’all crack me up. Letting your BFF American researcher ridicule & punch down on patients is a fucking joke.

I wasn’t ready for this. ☠️ 😭 Low T Pete will never live this down.

Healthy, adult professionals who spend their days trolling social media crack me up.

RT @caslernoel: Y’all acting like you’ve never seen an octogenarian drug addict whose never read a book & gets talking points from Putin af…

A man goes in for a colonoscopy and he happened to leave his phone recorder running because he wanted to record postop instructions from the doctor. What he captured was the anesthesiologist talking to him while he was under telling him that she wanted to punch him in his face to knock some sense into him and that he was a wuss . She also talks about falsifying his medical report. It’s really getting scary the number of unhinged doctors that are doing medical procedures on helpless vulnerable patients. The patient did not report her to authorities however he did sue her for malpractice in 2015. He was awarded $500,000 for malpractice and defamation.. I think he should’ve pursued criminal charges against her as she was way out of line, and was more than likely a danger to many other patients. Dr. Tiffany Ingham left her practice a year after the settlement while only receiving a reprimand from her medical board . I really like certain professions should require psychological evaluation before allowed contact with the public. Just my opinion.

Yesterday, my daughter, Kyra, passed away peacefully after a 9 month and 11 day fight against one of the cruelest diseases I’ve ever seen up close. She was diagnosed with Brain Cancer, specifically Glioblastoma. I have felt all of your concern and love for these months and wasn’t ready to be anymore specific than I was. Kyra was a 28-year-old young woman who loved deeply and who is impossible to describe in 280 characters. While her life got stolen from her, she handled these months with courage, poise, and resolve. And all I want is for no family to feel what we feel today. For no young person to suffer the way she did. In lieu of flowers, if you are moved to make a memorial gift, please consider “The Kyra Fund” (fundraise.gbmresearch.org/th…) This fund will be used solely to research treatments for Glioblastomas.

The girl in your freshman social studies class who raised her hand to ask why there’s no white history month is running half the major news outlets.

Let's Find A Kinder Way To Blame Long Covid Patients

Bryce Mitchell reacts to Sean Strickland being banned from the UFC White House event: "I'm not surprised at all. We ought to be able to criticize our own nation, let alone a foreign nation. [Israel] is the only nation you're not allowed to criticize. Something's gonna change, because evil empires don't last forever." (via @mmamania)

Long Covid Estimate Revised Up After Researchers Include People With Long Covid