Go Go Environment

Many folks are following the #KeystoneSymposia on Long COVID, ME/CFS & other IACIs. Unfortunately conference organizers are limiting access to most presentations/data. This email arrived last night. Sounds like the CEO is open to constructive feedback & shares his email address👀

There is not a single congressional district in the U.S. where more than 15% of voters support cuts to Medicaid.

Wisconsin: not for sale

Wisconsinites: if you’re in line, stay in line!

👀 You have got to be kidding me. theatlantic.com/politics/archi…

@hubermanlab @NIH ME/CFS and Long COVID, hands down

@hubermanlab @NIH No question, ME/CFS

@hubermanlab @NIH Long covid and ME/CFS

@CocoGauff @mitchellreports Amazing! In similar random story, I too met President Carter at a urinal in a bathroom in Georgia. He and President Clinton walked into an empty bathroom I was in at a hotel in Atlanta and proceeded to occupy the urinal on either side of me. Still one of my most surreal moments.

very random but I met Mr. Carter when I was a kid. We were on a road trip and stopped in the middle of nowhere Georgia at a Mcdonald’s to get some food. And randomly he was there using the urinal next to my dad lol💀. We kept seeing people suited up and armed but just assumed it was because we were in the middle of nowhere Georgia and if you’re from the south you know how they get down out there but turns out they were just secret service agents. Eating our food with my mom and my dad walks out the bathroom with the former President like they were long time friends🤣 He was extremely nice to us and a memory I will never forget. RIP❤️

When trying to get healthcare and dealing with the healthcare system when you have complex chronic illnesses you invariably get numerous claims denied. I was very excited to read today about this new free service to help. Has anyone tried it yet? businessinsider.com/free-health-in…

Today marks... 10 yrs sick with #MECFS 9.5 yrs housebound 7 yrs bedbound I was diagnosed after just 6 months but was told Graded Exercise would cure me. Following this advice dramatically worsened my condition and left me housebound.

💔

@DisabledDoctor Coyuchi. It is $$$ but high quality and has a lot of related bedding items in addition to some clothes. Nearly all 100% organic GOTS certified cotton. You might want to do a post asking for tips on what people use to wash their clothes in the first time to get any chemicals off.

Does anyone have recommendations for soft and comfy clothing brands that make clothes out out of natural materials (cotton, hemp, bamboo, wool, linen, silk, etc.)? Emphasis on the soft part as I have extra sensitive skin.

@cstroeckw Very sorry to hear Christoph. Will a doctor not prescribe one for you in Austria? If that won’t work, could you arrange for someone traveling to the US to pick one up here and bring it to you. I know they are prescription devices but in the US it is a quite easy to get script.

For 6 years, I’ve tried to obtain an ASV machine to address frequent nighttime semi-suffocation (mostly a central issue), but it’s been impossible. Over the past year, since I can no longer communicate, my caregivers have taken over and they are shocked. I am so done with this.

@Hannaheavery @MEAssociation Brilliant letter Hannah. 👏 I hope they respond and take action and ask for his resignation. This kind of article is what you’d expect in the 1990s not the 2020s.

I have emailed this complaint to @MEAssociation detailing why I find the article their chairman wrote so appalling. I agree with what seems to be the majority of #pwME that an apology and retraction isn’t enough and that Neil Riley should resign.

Too many (patients &) doctors fail to understand a critical point about PEM: the threshold for triggering it varies across severity. It’s flabbergasting how some think triggering PEM with ‘a run’ is ‘real & dangerous’ and ‘lifting your arm’ can’t be. Please explain!

@cstroeckw Thanks for raising awareness about this. I would just add that for most folks the physical or mental excersion threshold that triggers PEM also can vary day to day for the same person. So on a good day someone could maybe shower or do a short walk but another day it crashed them.

@cstroeckw Will DM you.

@gogoenvironment Christoph had a full spine mri in 2017. Who are the Doctors in Europe and the USA you would trust? There seems to be a bit of a cultish thing around the topic. Thank you!

Patients with #MECFS, does your PEM start with a nerve tingling or weird pulling sensation in the neck and cervical spine that then radiates further down your spine into your arms and legs? Thank you!

@cstroeckw I should also mention these evaluations are remote so Christoph would just need to fill out paperwork with his symptoms and get an MRI in Vienna and then do the consultation from home via Zoom or a similar telemedicine platform.

@cstroeckw I’m not a doctor but I would strongly encourage Christoph to look into being evaluated for tethered cord by one of the few neurosurgeons that specialize in it in Europe. There are at least 2 in Barcelona and 1 in Italy. Feel free to DM me and I’d be glad to share their names.