Personal opinion and an observation of mine: if a drug already has the property of crossing the blood–brain barrier (like most neurological medicines), it probably means it would harm the severe LC patients the most. NOT A MEDICAL ADVICE

A new study sheds light on why people with ME/CFS feel worse after activity. “Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in ME/CFS, where the body seems stuck in “high alert” mode.” Lucinda Bateman, M.D.

My angel, with all the pain you carry, I admire your resilience, your wisdom, and your faith in me and your dad♥️ Even in agony, you stood yesterday for a minute before nearly fainting, just to feel normality. You are my hero. I’ll do all I can to help find a cure. I promise.

Everyone ignores this huge problem striking families with LC kids, already devastated. If these extremely vulnerable children were taken from their parents “by mistake,” they’d lose the essential care they need to survive. Even the hint of this is terrifying. This is inhumane.

Finding this letter in my mailbox gives me hope. I’ve served on three NIH RECOVER-TLC committees and I’m ready to do more, but please keep listening to us. Don’t include only parents of mild LC children. We, as parents of very severe ones, live in hell and need your support

Big🙏 to @neurologistmom.bsky.social for the ALT text Left img: "PLEASE Long COVID Researchers “Please don’t make judgement calls about what is relevant. If we say it’s relevant to our LC, then it is, and you should want to hear more.” Please listen to your patients. Please hear your patients..."

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

I believe legal representation has already been secured.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

My Long COVID fam, please help Isla’s mom was arrested, accused of causing her ME/CFS daughter’s death She has another 15yo daughter with ME who needs her. They live in UK. She is an incredible mom. I am crying Any UK lawyer to take the case pro bono. Any journalist to cover this. Please help🙏🏻

I found this very informative as a result of my LDN experience survey on LC patients. So far, there are 129 participants. Among those who benefited from LDN, the most improved symptoms are: 1. Pain (35.7%) 2. Fatigue (34.1%) 3. Brain fog (34.1%)

I'm so proud of my husband @taltocd.bsky.social for working so hard to help other families like ours get access to support through complex medical journeys. It's a hard road and patients and their caregivers deserve better.

My dear Long COVID fam and big PAIS family, you know there’s no one we can rely on but each other. We must stick together and fight for what we deserve. Here’s the interim results thread from my LDN survey. Please share the survey from the quoted tweet so I can update 🙏🏻❤️

I created a survey on LDN use in Long COVID. If you’ve tried it, please fill it out. I’ll share anonymized results later. My daughter’s experience wasn’t good, but I still filled it out, we need to learn from all cases. Please share to reach more people🙏🏻 docs.google.com/forms/d/e/1F...

Our vulnerability is indescribable. We’re at the point of hugging and thanking our executioners just because they’re being nice while placing the rope around our neck, and we really mean it. This is how open we are to being exploited.

We have a great family physician now. I’m a physician, and my husband is too. But why do I still get insane anxiety as my daughter’s appointment gets closer? PTSD from medical gaslighting is real. It isolates you and makes you stop seeking care when you need it the most.

I never expected the treatment studies to move this fast after the RECOVER-TLC agent review, especially for kids. But here we are! I’ve just been invited to join the protocol working group for a specific agent targeting both pediatric and adult populations. Win is a win!

Dr. Hopper’s daughter said, “What happens to children who don’t have a doctor mom fighting for them?” My daughter says, “I know they are dying. The children at my level of sickness...”😔 Check this article from @batemanhornecenter.bsky.social batemanhornecenter.org/the-youngest...

Why is there so much overexcitement and enthusiasm about humanity expanding into space and other planets as if we’ve already mastered taking care of the one we actually live on?

I’m co-authoring a children’s book series related to my profession, dementia. I want to donate all of my share to an LC research group I believe in. It won’t be much, but at least it’s something. Do you know the proper way to donate book profits?

Here we go again! “Possibility of Parkinson’s triggered by SARS-CoV-2.” I love seeing studies confirm my observations, but the clinical side is still missing. Neurologists should ask a few more questions and start designing proper studies. sciencedirect.com/science/articl…

The Economic Times: ''My son battling Long COVID…': RFK Jr.'s shocking revelation amid fresh COVID surge' 'Chairman Cassidy sought assurances that NIH would continue to study Long Covid. Kennedy responded that his own son is struggling with Long Covid' m.economictimes.com/news/interna...

My dear fellow moms whose children are suffering, I know the best Mother’s Day for us is the day we do not see them in pain. Happy Mother’s Day to all of you with tears on your face today. To those in charge, please do something urgently for our children. 🙏🏻

We are being heard on contrast reactions. @putrinolab.bsky.social was very kind, as always, and reassured me that he will look into it. Although this is just a survey, he plans to discuss it with his colleague who does imaging in LC patients🙏🏻

After 72 hours with no sleep, then 5–6 hours of really poor-quality sleep, we’re back to 24 hours awake again. Waiting for the sleep fairies. As if it doesn’t do enough, the disease wants you to stay awake as long as possible just to torture you a little more. #LongCovidTeens

I am honored to be asked for permission to use my quote in the 2024 annual report of the RECOVER-TLC program. I meant every word with all my being — I’m not going to stop! “I’m not going to stop now. I will keep trying to find a way to help my daughter and others suffering from similar conditions.”

The results of the online survey I conducted on adverse reactions to CT/MRI contrast in people with Long COVID are quite surprising. I created a presentation with graphics to summarize the findings. I can only share it with scientists in the field who may be able to help get it published🙏🏻

I’ve received 20 reports so far, and what I’ve read is unbelievable! These serious reactions should’ve been in the drug info long ago. Yet there’s not a single case report about this dangerous sleep deprivation. Here we are, creating our own data, open to scientists.

#pwLC #pwME #NEISVoid please response and reshare

This is a serious issue. Celine @healingfromlc.bsky.social is already severely ill with COVID-related complications. She had a dangerous reaction to the CT contrast and hasn’t slept in 2 weeks. She needs urgent attention! @ministerVWS Please share to help reach someone who can help her.

The reality for Long COVID patients: begging for medications that cost tens of thousands, only to end up more medically harmed. Sadly, this will remain our reality until the root causes are found and properly treated. More research is urgent—we’re slowly dy**g!

“Effectiveness of Paxlovid in Protecting Against Long COVID” @NIH RECOVER Initiative Webinar Tuesday, April 8, 2025 at 12:00 PM ET Registration link below ⬇️ rtiorg.zoom.us/webinar/regi...

“The truth is we never really helped HIV until we discovered the HIV virus. That was important and that we found very quickly… 12–13 different antivirals. And then we found out what combinations worked…” —Nancy Klimas, Director of the Institute for Neuro-Immune Medicine

“Mom, when I black out for a few seconds because of POTS, all my pain disappears. But as soon as I regain consciousness, the excruciating pain comes back in full force. That’s why I want to be sedated until they find a cure” From my daughter yesterday #longcovidkids

That one magical day when my daughter made me the birthday princess… #LongCovidKids #LongCovidAwarenessDay

Yeah, my kid has ADHD, anxiety, OCD, and Tourette's he's come to me any times heartbroken, asking why, and why can't we help him, when he will be better, when it will be done. We're trying. I'm trying, I promise. I'm trying so hard. Neither of you are alone.

Every day, my daughter asks me, “What did you do today to help ease my suffering? You promised me you’d find a way and I’d get better.” Yes, I promised her and I’m doing everything within my limits but I feel so alone😔

“Menstruation Science: Unlocking the Secrets of the Hormone-Immunity Nexus” There’s still so much we don’t know about the relationship between menstruation and Long COVID. Don’t miss this event! You can register online for free.

I put together all the videos from some of the top scientists in Long COVID research for #LCHopeVideos2025 on Long COVID Awareness Day. We appreciate all of them around the world for the hard work they have been doing for us. youtu.be/QsP_o13xYdA?...

I received a very kind reply from Dr. Akiko Iwasaki about the #LC2025HopeVideos request. Though she couldn’t make a video, she assured us they’re working hard to find biomarkers for Long COVID therapy. It’s a relief to have such a dedicated team focused on the biomarkers we desperately need. 🙏🏻

Thank you for putting these videos together, @neurologistmom.bsky.social ! I found @immunofever.bsky.social’s to be very soothing. Can’t wait to watch the rest tomorrow.

Michal Tal @immunofever.bsky.social has a message for us! Here’s the latest Long COVID research update from the MIT Tal Research Group. Thanks for this incredible presentation and for supporting the #LC2025HopeVideos campaign—you’re always there when I need help. 🙏🏻 youtu.be/BjBXlS6myqw?...

“Long COVID is not psychogenic, not psychiatric, not somatization, not FND, not caused by fear, not from your tears, not because you’re weak and yes you really are that sick” Svetlana Blitshteyn has a message for us. Well said, my dear friend! 👏🏻👏🏻👏🏻 #longcovidawarenessday2025 youtu.be/SxEkqT31TFs?...

“While progress is painfully slow, the growing number of scientists and clinicians engaged in Long COVID and related conditions offers real hope for lasting change in care and treatment.” Lucinda Bateman @batemanhornecenter.bsky.social has a message for us! #LongCovidAwarenessDay

“We need to start by educating physicians to prevent patients from being dismissed and to ensure they can access safe, effective medications that could at least help alleviate their symptoms.” I am proud of what I said. I said more, but they cut some parts anyway. :) #LongCovidAwarenessDay

“My aim for 2025 is to write up clinical guidelines that are simple and easy to follow, allowing patients suffering from Long COVID to get effective relief from severe and disabling gastrointestinal symptoms...” Rebecca Ryan has a message for us #LC2025hopevideos #LongCovid youtu.be/zR3L8jznE-I?...