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…
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.
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
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
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.
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.…
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
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.
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.
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?
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.
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. 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.
2K Followers 1K FollowingBlood cancer doc. Alumni @uoaofficial (MD) @PittTweet (PhD, IM/HemOnc) @MDAndersonNews (BMT & CT). Opinions of my own not my employer’s. Rude=block.
79 Followers 552 FollowingLooking for Covid cautious community 😷🍉 Long Covid/ME/CFS. No remaining quality of life left to risk on what my government tells me is safe 🫠
2K Followers 7K FollowingNon citoyenne : ME/EM Endogirl Sopk Adenomyose Covidlong/persistente lyme 5 años calvario/pacientes en abandono calducha en alma Los 23 CampoM la 🎼🎹 ma vie
166 Followers 864 Following"For I was hungry and you gave me to eat, thirsty and you gave me to drink, a stranger and you welcomed me..."(Matthew 25: 35)
691 Followers 2K FollowingMy body hurts and I'm mad at the government. 32. minors DNI
📕: crochetcommie
📌 See pinned post 💜
🇵🇸 FREE PALESTINE 🇵🇸
She/ they
8K Followers 8K FollowingBSc, MRes Neuroscience, BMedSci, PhD Med Ed (& life) on hold due to covid caused #longcovid #pots #mcas #adenomyosis #hypothyroid Ex PT & yoga teacher 😷
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14K Followers 13K FollowingA non-profit social enterprise dedicated to
people with #LongCovid + #ME.
💙📚 Home to the #pedanticzebra book club.
🛍️ https://t.co/8JlRWqxASF
3K Followers 3K Followingfeel like a mole living in a dark ME/CFS #mecfs hole sharing thoughts ,trying to make a small difference. Lancs U.K. - #bekind also https://t.co/KxMHrvrqZ8
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10K Followers 1K Following#UnrestFilm Sundance award-winning #mecfs film, made for anyone who has ever lived with or loved someone fighting chronic illness. @jenbrea
9K Followers 261 Following28. Stay-at-home cat parent. Ex-YouTuber and book blogger. #ActuallyAutistic & severe ME. Passed away January 27, 2024 🖤
Media enquiries: [email protected]
9K Followers 285 FollowingA neurologist, M.D., mother of a 17-year-old with #Lupus #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains.
7K Followers 4K FollowingHuman rights at home & abroad ♿ Executive Director @LCCampaign. Past: President @MalalaFund, Senior Fellow @CFR_org, Fellow @Kennedy_School, @WFP & @ONECampaign
4K Followers 5K FollowingIf left to my own devices, I will build more. Running @co2trackers. No I don't want this damn unearned blue check, I want the features and the 2fa.
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Founder & CEO :@invinciblejha
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619 Followers 1K FollowingMaryland Chapter of #MEAction Network: advocacy, education & support for people with Myalgic Encephalomyelitis #MECFS & complex chronic illnesses in the DMV/MD
1K Followers 2K FollowingFormer CEO and Executive. Full time #LongCovid and #MECFS battler. Avoid Covid and slow down if you get infected. Don’t get Long Covid. Trust me!
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2K Followers 811 Following23 year old long hauler trying to piece my life back together. Former CC/T&F athlete. @miamiheat fan. #longcovid #notrecovered.
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* 31.01.94 - † 08.07.25
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