Yesterday, during a conversation with my dentist friend she told me that one of her patients developed encephalitis after a routine dental procedure last month It was the first such case she had seen in her 30 years of practice I told her that our immune systems are not what they used to be anymore⬇️

"Why does every appointment eventually turn into questioning the only people who truly understand my illness, have sacrificed everything for me, & whom I feel incredibly lucky to have as my parents?” -

Today my daughter turned 18. I wrote this article with a sense of relief, while still carrying all the trauma on my back. "When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat" open.substack.com/pub/neurolog...

1/ "Many chronically ill patients no longer fear only their disease. They fear the healthcare system itself after years of dismissal, disbelief, humiliation, & abandonment" - @neurologistmom.bsky.social 🙏 open.substack.com/pub/neurolog...

I read @neurologistmom.bsky.social substack post this morning in my email and it made me feel so seen. The cPTSD involved in seeking treatment is unacceptable.

Raise your hand if you have Iatrogenic PTSD. 🙋‍♀️ I now have to take Xanax to go to any medical appointment, or my blood pressure shoots up to stroke range and the doctors freak out. My BP is otherwise normal, but I take two BP meds due to this issue.

“Iatrogenic PTSD: When Healthcare Becomes the Source of Trauma” This is the term I suggest for describing what many chronic complex disease patients develop after repeated dismissal, invalidation, and gaslighting by healthcare professionals. open.substack.com/pub/neurolog...

Happy Mother’s Day to all mothers, especially those whose children are severely ill and who witness their child’s suffering 24/7, pulling them back from the brink of death countless times while living constantly on the edge…

Immune complexes containing viral material may be driving Long COVID? This new study shows phagocytic clearance triggers cytokines and endothelial dysfunction viral remnants → immune complexes → phagocytic activation → inflammation → vascular damage www.biorxiv.org/content/10.6...

Post-Vaccination/Post-Infection Syndrome (PV/PIS) is not “just symptoms.” Proteomics shows: • ↑ serum amyloid A1/A2 • ↑ coagulation factors X, XI • ↑ attractin • ↓ immune regulatory proteins Persistent immune dysregulation + coagulopathy Partially overlaps with LC but not the same disease biology

No virus in the brain. Still brain dysfunction. Patient serum alone can induce neural changes. Circulating signals could be sufficient to drive Long COVID symptoms. 🔗 biorxiv.org/content/10.648…

Severe Long COVID is not “delayed recovery.” Based on 13,511 patients with longitudinal data, baseline severity strongly predicts trajectory: • mild → stays mild • moderate → may improve • severe → remains severe 🔗 arxiv.org/abs/2603.18115

COVID-19 and Parkinson’s disease may share overlapping molecular pathways. This new study identifies shared genes and immune pathways linking the two. Not proof of causation, but a signal pointing toward neurodegeneration related pathways. journals.asm.org/doi/10.1128/...

Sleep disturbances in Long COVID are underdiscussed. “Sleep disturbance may contribute to chronic inflammation in Long COVID by compromising certain inflammatory resolution pathways.” pubmed.ncbi.nlm.nih.gov/41650882/

Chronic sleep dysfunction in Long COVID may represent an overlooked risk factor for Alzheimer’s disease. A study links impaired glymphatic function, the brain’s waste clearance system, to amyloid and tau accumulation. Sleep drives this clearance Less clearance →higher AD⬇️

No neuronal damage. No neuroinflammation. That’s the conclusion of this Long COVID paper. But it still points to brain-mediated symptoms via immune signaling. No damage ≠ no brain involvement. Likely a compartment issue. 🔗 www.nature.com/articles/s41...

Neurological Long COVID did NOT show a shared CNS autoantibody signature. CSF and serum reactivities were sparse, heterogeneous, largely PATIENT-SPECIFIC. Important negative finding. Long COVID biology is more diverse than a single humoral pattern. www.medrxiv.org/content/10.6...

New study shows that functional MRI in patients with Long COVID and ME shows reduced activity in brain regions associated with cognition, which may contribute to cognitive difficulties such as ✔️ MEMORY PROBLEMS ✔️ DIFFICULTY CONCENTRATING ✔️ SLOWER THINKING

"Advocates[...]warned against “mildwashing,” or the tendency to focus primarily on less severe cases" Very important and good article about the harmful exclusion of the most severely affected from scientific trials & undertakings. @neurologistmom.bsky.social #ethics #mecfs #longcovid #mcas #pots

People with the most severe #LongCOVID symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. They are not beyond the reach of science; they are where real progress begins. Read more from @neurologistmom.bsky.social: bit.ly/49TMXdz

2/ When we made this 🇨🇦 Canadian short film about #LongCOVID, we were keenly aware that Justin's story was just the tip of the Long COVID iceberg - Justin's Long Covid Story: youtu.be/p8HPBmtHzEg?...

We urgently need to include severe Long COVID patients in research. They are already invisible to many, and sadly to research as well. Excluding them may cost us understanding the disease; they hold the answers to Long COVID. I wrote for @thesicktimes.org thesicktimes.org/2026/01/13/s...

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