We've added another 60+ signatures to our World Patient Safety Day letter. 🙌 Past or present HCPs, there's still time to sign – the deadline is today! Thank you all for your incredible support and for sharing. Link below. #ThereForME

📧 Quick reminder that the best way to stay updated on the #ThereForMe campaign is by subscribing here: thereforme.uk Huge thanks to the LC/ME community for all the support this past week!

It’s interesting that the emojis show the earth from three angles 🌎 🌍 🌏 but not the fourth. Though 🔵 is a fair approximation of what it would look like. People underestimate the Pacific.

📷Big news for US-based TBFighters!! 📷 The End TB Now Act passed the Senate, it needs YOUR help to pass the House. Click here to help: tbfighters.org/templates/end-… #EndTB

Having the jaw issues on top of everything else is killing me. I had an appliance installed yesterday to try and reverse what's going wrong with it. The appliance is very different from what my dentist described and she left out lots of info. I don't know if I should trust her.

I simply don't have the energy. I also don't have the emotional capacity to deal with something being done to my body that I did not agree too. Also the appliance has a lot of dietary restrictions which is not helpful on top of the dietary restrictions I already have.

So good to see parts of the medical profession get around to what millions of amateurs have known for 4 years. We may even see some tiny bit of progress on it somewhere between the next two ice ages.

This totally wrecking my mood has reminded me how little I'm always hanging on by. And apart from having severe ME I am incredibly lucky and privileged in pretty much every single way.

Por crisis de no salud, exceso de chamba y entrega de informe, tengo en stand by: - Responder privados en todas las redes - 2⁰ ciclo de 'Usted Está Aquí' - Antología disca 3 - 'No libro' Postales - Algunos #PoesíaEnPijama Retomo en noviembre, ténganme paciencia disca. 🦾♥️

Great video: Implementing Pacing to Prevent PEM, thanks to Chimére L. Sweeney Todd Davenport #MEAction Network youtube.com/watch?v=tcXnbR…

Alright final update and takeaway. Best person to call is 911 for immediate gas measurement/imminent safety risk. Next best person is poison control who explained to me the difference between natural gas and co! And symptoms etc.

David Esteban has enough patients for his #LongCOVID microbiome study, but needs more controls (people who have had COVID-19 in the past & have fully recovered.) If anyone wants to participate, knows anyone who might be interested, etc., please email them &/or share!

#GreatestMEdicalScandal deserves your coverage. #JohnVsJonVsME

Maya Tribbitt Taylor Kay Phillips Johnathan Appel Charles Wilson Neelam Bohra Chrissy Shackelford Marian Wang Matt Passet Chris McDaniel liz Wynn Van Dusen Jeremy Anthony Miale Laura L. Griffin Kelsea Bauman-Murphy Kyle Ploof Kaye Foley Anita Hassan Joanna Rothkopf Check out JohnVsJon.com to learn more about #GreatestMEdicalScandal and how you can win another ME prize #JohnVsJonVsME!!!

A reminder that people are still dying of COVID. Many high risk people still can’t access the world after four and a half years without fear of becoming more disabled. I think a lot of this has to do with visibility. Just because you can’t see COVID doesn’t mean it’s gone.

I’ve meant to share this. This was a great experience — I love interviewing people + engaging this way. Thanks, Mike! I talked to some GIANTS in the #LongCovid and #MECFS industry. Thank you, #MEAction Network for trusting me w/this opportunity.

Update: it hurts when they stick a needle in your neck 😭 Left side of SGB in the books. We added pulsed radio frequency because the doc said that “sometimes” that makes the effects last longer. Here’s hoping it doesn’t wear off in a few days because feeling chill is nice.

I have made a new Gofundme for this month. I really need urgent heIp!! I only have about a week left to meet this go@l to avoid being hom3less with ME/CFS for the 4th time. Really stressed this time😭 gofund.me/50c50d56

#GreatestMEdicalScandal