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Today is #severeMEday. In April, my sister Meredith was a software engineer, living a normal life, & thriving. This is her before she became ill with #LongCovid, and this is her now. She’s 32. As her sister, it feels like my heart has been ripped out of my chest. 1/

Any treatments for #SIBO that have helped you? Resources we should look at? Looking for information to supplement Meredith’s specialist’s recommendation. #longcovid #mecfs #mcas #leakygut

Physics Girl Livestream, Saturday, July 6th 2024. This Saturday we will be live-streaming a day in Dianna’s life, showing what it’s like for her suffering from #MECFS and #LongCovid The Livestream will be viewable on the PhysicsGirl channel on Youtube from 6:45A.M. (PT. Pacific Time) to 6:00P.M. (PT). It will be co-hosted by Ian Hecox and Simone Giertz, and will include pre-recorded expert interviews and in depth discussions of what Dianna is going through. Dianna will not be talking during the Livestream, she will be in bed, mostly awake, but resting all day - as she does everyday. Viewers can learn from the interviews and discussions, hear Kyle, Simone and Ian answer your questions, and of course see Dianna. All funds will be going to the Open Medicine Foundation (OMF), a non-profit research organization dedicated to finding effective treatments for ME/CFS. (omf.ngo) Pre-recorded interviews from experts — - Linda Tannenbaum, founder and CEO of the Open Medicine Foundation. Interviewed by Derek Muller from Veritasium. - Dr. David Kaufman, an ME/CFS specialist. Interviewed by Vanessa Hill from BrainCraft. - Dr. Raven Baxter, a science communicator. Interviewed by Kyle Kitzmiller. - Dr. David Putrino, director of Rehabilitation Innovation for Mt. Sinai Health Systems. Interviewed by Kyle Kitzmiller. #MECFS #longcovid

I haven't posted in a while. It's so hard to see a loved one suffer like this. But Meredith is optimistic and so am I. I'm staying at her house again, helping in any way I can. It's now been a year since she became ill.

The deluge of folks now developing #LongCovid on 2nd, 3rd, 4th+ infection (with no issues on prior infections) — should stop everyone in their tracks to think: “Wait a second — What is the plan for this situation?” There is none — & nobody who developed LC, thought they would.

Fortune: “On par with cancer and heart disease’: Experts, patients warn Congress about the burden of long COVID as the government blows through $1.15 billion without finding a cure” ‘a strong argument to be made for the government to provide the funding’ fortune.com/2024/01/24/exp…

Meredith told me several months ago when she started to have extremely scary symptoms, “I have hope. I don't need permission or a sign. It comes from inside me.” This is a brutal and cruel illness, but I aim to be as brave and strong as my sister.

How it started ➡️ How its going How ironic that fighting for us would destroy me like this. We are quite literally in the fight for our lives + the toll of the path forward is brutal. We need carry each other, focus our energies on the government, and demand clinical trials now.

@MamaSitaa__ This absolutely breaks my heart. I hope you feel better soon. Sending you thoughts of healing, and lots of strength.

I'm incredibly unwell. I'm completely bedbound rn. I haven't eaten more than popsicles in two days. My 14yo is forced to take care of me and my 8yo. I cannot even participate in advocacy atm. I beg you, keep my name out of your mouth and do not bring drama to me. I cannot. 💔

The Long Covid crisis must be declared a national emergency. That is what is required to mobilize an appropriate response with the funding and urgency needed to save lives. This is as serious as the AIDS crisis only this time we made sure all the kids would be living with it too

🚨Really critical community action taking place next week👇 NIH funding for #LongCovid research has run out — & no plans for NIH/Congress to ask for more. We’re going to flood the phones on 11/14 to make our reps aware & call for atleast $1B a year in research funding🧵

Please dig in and help us find some advocacy that can specifically fight right now to get Ariane her proven IVIG treatment - the doctor has cut her off and she will die without it. She is in Canada. #MECFS #LongCovid community

@rubyslippahs Thank you, don’t make me cry! ❤️

I’ve flown across the country again to stay at Meredith’s house to help as much as I can. The last time I was here it was two months. This trip is short in comparison. I wish she was doing better. I miss talking with my big sister about fun things.

@rubyslippahs We struggle every day, Meredith had a couple good days last week but now is going backwards 😞 but we are doing the absolute best we can. Trying to remain optimistic!

@rubyslippahs This made me smile - I really needed that! ❤️

Great article in Nature: Long COVID research risks losing momentum – we need a moonshot “Investing US$1 billion every year for the next ten years into long COVID research could improve the lives of millions and save trillions in economic costs.” nature.com/articles/d4158…

@oliviaahliv Hi Olivia, I used to work in grant writing and have a couple ideas. Message me and I’ll be happy to share

Meredith has had to wear an eye mask all day for months now because of extreme light sensitivity, but today she was able to take her eye mask off for a couple minutes, with a very small amount of light coming in the windows, from the blackout blinds being lifted ever so slightly. We are celebrating today. This, however shocking it may be, is meaningful progress. But at the same time I am devastated that this is her life right now. She is still bedridden. She was healthy, living a beautifully full life, just several months ago. This is the reality of #LongCovid and #MECFS

This discussion is so needed although I strongly feel that to raise awareness to the masses we shouldn’t add another acronym to the mix; there are so many already. We need something the average, able-bodied person will understand immediately. There is a suggestion here of an awake coma, someone said functional paralysis, someone said catatonic - describing the body’s state while the mind is wide awake. These are on the right track and we desperately need better language to describe this illness. Fatigue does NOT do justice to sufferers like my sister. We need the words to use as tools in a platform for change

The problem with the term ‘fatigue’ in Long Covid, and the hunt for a solution 🧵 Any term used to describe tiredness or lack of energy in healthy people falls spectacularly short of accurately capturing the crushing nature of the symptom in LC. 1/8

This is my 3rd weely reminder that @nihceal wasted a $1billiion in #LongCovid research money, has no results, and refuses to provide public documents and answer questions of @statnews. AND, @NIH did not ask congress for more research $! @SenSanders @RandPaul @timkaine