THIS. We need as many people as possible to understand the reality of this illness. If we don’t get more people on board, we risk just shouting into the void.

This is my 2nd weekly notice that the NIH wasted $1billion & has produced no biomarkers and treatments. They have a list of symptoms...for $1billion. And congress refuses to fund #LongCovid now. We were robbed.

I struggle to convey to friends and family just how horrific this illness is. How can they even fathom it? How do I say in normal conversation, my sister is in such profound pain, all day every day?

3 summers ago I got my first pair of rollerblades. Was able to use them for only a couple months before getting sick. This year I told my mom I want a wheelchair for Christmas. #LongCovid

Meredith is on so many medications now and every single day I hope they will help her. I worry all the time. Everything makes me think of her and her suffering.

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 STAT. AND, NIH did not ask congress for more research $! Sen. Bernie Sanders Rand Paul Tim Kaine

Meredith has gained enough energy to eat the skins on baked potatoes. This is an improvement because it’s been mainly soups & smoothies for a long time.

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…

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.

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

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.

🚨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🧵

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

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.

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.

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…

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.

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.

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

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