1/ Powerful remarks by Dr. Maureen Hanson (Maureen Hanson) on the “Next Steps for ME/CFS Research” panel at the April 2019 NIH meeting “Accelerating Research on ME/CFS”. 🧵 Read the full remarks: solvecfs.org/day-2-of-the-n… #MECFS #pwME cc #LongCOVID

‘Underlying health conditions’ is the new ‘but what was she wearing?’

“The people on that plane were representative of the melting pot — old, young, gay, straight, male, female. From all races. Mothers, fathers, grandfathers, grandmothers, husbands, wives. Mothers to be.” At the end, we are in the same world.

If it's free, you're the product.

Wow. That 6 year old knows more about #Medicine than every single one of my Doctors over 15 years. All of whom misdiagnosed me bc they ran the wrong tests so concluded I was either #Psychosomatic or Deconditioned #NEISVoid #autoimmune #pwME #RareDisease #MedTwitter #EDS #POTS

If that child in the school bus ran for office, I’d vote for him/her

#ChronicIllness Problem #876: To be or not to tested To Be: Get closer to underlying cause/ prove severity/ get treatment BUT test results likely ‘normal’, giving more ammo to be dismissed = Suffer more To Not: Can’t take more Medical PTSD The eternal dilemma #NEISVoid

Saw a previously healthy 10-year-old boy who is now disabled from #LongCovid ... I don't typically see kids, but made an exception because #LongCovidKids have nowhere to go, like adult patients. I am worried that we will be seeing more #LongCovidKids as school starts. 😭😷💉

#MEAWARENESSHOUR #MECFS #LONGCOVID #chronicillness oh the futility of seeking help? You take your tiny energy and PUSH yourself to go to a doctor and don't get help (and may get treated badly) and have to DRAG yourself home worse than you were #PWME 33yrs and still waiting !

When #Healthy, I had bouts of situational #Depression. #Exercise & focusing on positive helped. That doesn’t work w/ #Suicidal ideation & #MEcfs Victimised by medical neglect,who saves us when #Psychiatrists, supposedly the strongest #MentalHealth advocates, are the abusers?

Heartbroken! Just found injured baby #squirrel in our backyard. Barely alive, think it fell out of tree. Local #wildliferrescue hospital closed until tomorrow. Any advice or resources? Don’t want to touch it but want to help possibly keep it alive until tomorrow. #veterinary

This line of thinking is in line with my paper on #POTS as a CNS disorder. link.springer.com/article/10.100…

🚨I wrote about “brain fog”—one of the most common & disabling symptoms of long COVID (and many other pre-pandemic conditions), and one of the most misunderstood. Here’s what brain fog actually is, and what it’s like to live with it. 1/ theatlantic.com/health/archive…

We're putting together a regular publication of patient-generated research hypotheses, published for researchers to pursue! If you have a hypothesis & are a patient with #LongCovid, ME/CFS or a related condition, submit here by Oct 31: forms.gle/8QYfY9nCtSdJQM… Please RT! 1/

Important new #POTS research from Karolinska Inst. funded by Dysautonomia International has found biomarkers associated with a hypercoagulable & proinflammatory state, enhanced cardiac contractility & hypertrophy, skeletal muscle deficits, cartilage protein deficits & more. 1/🧵

I’m pro vaccine but #Pfizer booster made my #POTS & #MEcfs 10x worse. Was terrifying. I’m lucky to have a Dr help me back to baseline but it took 8 months & still have lingering issues. #Covid can do same, so lesser of 2 evils, but acknowledging risk important for future research

🛑I wrote about what “fatigue” really means for people with long COVID and ME/CFS, and why this profoundly debilitating symptom is so often misunderstood and trivialized. (This piece also covers PEM.) 1/ theatlantic.com/health/archive…

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell. A massive and shocking story in this week’s column. theguardian.com/commentisfree/…