We often talk about being at "some percent" of previous function in #LongCovid #MECFS Lets get a dataset together: % Physical % Cognitive % Social/Interactive % ADLs - basic activities of daily living I would be: 10/5/15/25 100% would be previous health RemissionBiome MECFS/LongCovid Self-Experiment

Jake has chiari, CCI, and possibly other #MEspine issues. It's heartbreaking to think of them being homeless, without any support. 💔😭 I don't want them to get worse. Please help, if you're able. 🙏 gofund.me/f922448e #MECFS #pwME #LongCovid #NEISvoid #EDS #hEDS #CCI

This is something I've tried explaining to people again and again over the years. So I finally wrote about it: Why #MECFS is nothing like everyday tiredness #ChronicIllness Emerge Australia #MEAction Network #MillionsMissing #pwME #LongCovid abc.net.au/news/2023-09-0…

What are your favorite writings on the spiritual & mythological aspects of severe illness/disability & mortality? Poetry or short form essays preferred, can't read for any length of time but hungering to connect with writings in these topics. #chronicillness #neisvoid #writers

A town has no shoe shops so a new shoe shop opens up. Whenever the townspeople complain of hurty feet, they get sent to the shoe shop. The problem is that the shoe shop is run by people who are not shoe experts. They have no clue about making good shoes 🧵

I had a scan through submissions to the Australian #DisabilityRoyalCommission looking for #pwME #MECFS Unsurprisingly, the narratives are around misunderstanding, disbelief, difficulty in getting funded supports (& fear of losing them), and abuse. Here are some excerpts 🧵

Dear ME community, this thread is from a dear friend who needs our help. Does anybody know what to do? It’s a post from Nele and I’m posting this for her because she’s not able to respond right now. Please RT if you can 💙 #MedTwitter #pwME 👇🏼

In loving memory of Céline Corsius. #pwme #myalgicE #severeME #millionsmissing

Today is a reminder of how far behind we are in providing treatments that work for ME. People with ME may be faced with the choice of little effective medical assistance to live but very effective medical assistance to die. The fact this is a decision at all should be shameful.

I am planning to try LDA. Those of you who’ve tried it: at what dose? How did you titrate up? How severe were you when you tried? What effects did you see, positive and negative?

The degree to which #MECFS patients are engaged with the intricate science of their disease is, in large part, a direct result of institutional and medical neglect and a trauma response.

Where can I read about hyperadrenergic #POTS and norepinephrine? I'm looking for things to show my doctor. So not just a list of types of POTS but more information on what happens in the body. I'm stuck in an even higher constant adrenaline rush after another med gone wrong.

President Biden This is probably the best insight and update I’ve read on #LongCovid in a number of months — I think what is absolutely clear is that the political dynamics of our situation are not going to change until we make it so. nejm.org/doi/full/10.10…

To operate effectively through a crisis: Focus sharply on the *one thing* you can do next. Paralysis comes when people sit in emotion & overwhelm. "One thing" mindset begins motion - with a simple, clear foot forward. Do one thing...recenter, do another & keep going.

Yet another person with Myalgic Encephalomyelitis (ME) left this earth. I’ve lost track of how many that is now. The posts appear every week or two. This person died by suicide. That person is setting a date for euthanasia. #MECFS

Australian POTS Foundation is “pleased” Andrew Lloyd will be presenting at their conference in March. But not pleased with the patient outcry at this gross lapse in judgement. facebook.com/share/p/8fH4vg…