Sounds about right. Do they blame cancer patients for their advancing cancer if treatment is unsuccessful?

Hey thank you x
I am very grateful.
I am so sorry you’re severe.

Thank you - good advice, but she’s got a tube.
And two other stomas, and a central line for fluids.
Her gut is in such stasis and dysfunction that tube feeding isn’t working. It’s not uncommon in severe dysautonomia.

I don’t need sympathy, I need change.”

My daughter has been brutalised by a system which she trusted to heal her.

Still we have to fight. For nutrition, fluids. To keep a child alive.

Sarah’s bravery means others like me can start to lift our heads above the parapet.

#longcovidkids
#ME
#pwME

#MEmomentOfSilence

Pass it on! 💙

Gastro Team of (the major hospital we were at) are STILL saying this in brain gut connection. They openly conceded they did not know what many of these tests meant.

They are refusing to support TPN, and it seems discussing this with other doctors in TPN clinics to ensure she doesn’t get TPN.

An oesophageal manometry that shows no peristalsis and inappropriate sphincter response….. I could go on. She’s got 3x stomas to keep her alive, tube fed (but not going well) a central line for daily fluids…can’t eat or drink.

My daughter needs TPN ongoing.

She has x 3 colon transit studies that demonstrate very abnormal bowels. An anal manometry that demonstrates sphincter does not work.

Transit studies that show her small bowel transit is rapid. A gut alimetry that shows neuromuscular damage.

A cute white mouse perches on the side of a plastic bowl on a metal table in a research lab. The mouse has pink ears, nose, feet, and a long tail.. The text reads, "The Sick Times. Long COVID research updates. A drug for celiac disease was found to be safe and effective in treating a post-COVID syndrome in children. Researchers found that SARS-CoV-2 and influenza can awaken metastatic breast cancer cells in lungs. An upcoming at-home clinical trial program for Long COVID."

A drug originally developed for celiac disease was found to be safe and effective in treating a post-COVID syndrome in children, according to a new paper published in Science Translational Medicine. The small trial of 12 participants tested larazotide to treat multisystem inflammatory syndrome in children (MIS-C), finding that it reduced gastrointestinal symptoms and cleared spike protein. “We are now running a clinical trial to test whether larazotide may also be a useful therapy to treat patients with Long COVID,” author Lael Yonker said in a press release. Read more about the trial in our earlier coverage.

“Dormant cancer cells are like the embers left in an abandoned campfire, and respiratory viruses are like a strong wind that reignites the flames,” said one of the authors of a new study in Nature, in a press release. Using large epidemiological data sets and a mouse model, researchers found that SARS-CoV-2 and influenza can awaken metastatic breast cancer cells in lungs. The authors stated that oral JAK1 and 2 inhibitors may help reduce risk of this specific cancer progression, but that they need to be further studied.

An upcoming at-home clinical trial program for Long COVID, run by Scripps Research, is seeking participants. Long COVID Treatment Trials will run fully remote clinical trials that allow people with severe symptoms to participate, starting with one trial of a repurposed drug including 1,000 participants, according to a press release.* Learn more about the program and sign up for the trials waitlist here.

🧸 A drug for celiac disease was found safe and effective in treating a post-COVID syndrome in children

💊 Researchers found that SARS-CoV-2 and influenza can awaken metastatic breast cancer cells in lungs

🏡 An at-home clinical trial program

This week's #LongCOVID research: bit.ly/46I9xVz

for this #longcovidawarenessday I want to say thank you to my pediatric and adult patients that are making me a better doctor, and better human and a better carer.
I’ll give my best to give everything back to you to make you feel better

Because I refused contraindicated treatments like Graded exercise, and psychotherapy as primary treatment, I was accused of medical neglect. More than once.

But they could not, because she was clearly deeply, acutely, organically physically ill. But long covid didn’t cause GI issues, the consultant asserted (in May 2023).

We were never provided with reasons for this treatment, even when lawyers were involved. We were told that clinicians talked about trying to prove muchausens - by proxy or not.

Nurses gossiping about the compelling drama (and the mad parents) rolling out in the hospital meant everyone had a presumed perspective before they even entered the room. My very sick daughter was treated like a pariah and a fraud.

Despite there being no court or safety orders. Just on hospital doctors and executive say-so.

She was not permitted to leave her room. She was not allowed to talk back. We were only allowed to see her certain hours, and always in the company of hospital staff, who tapped away on their keyboard noting our conversations.

When it was clear she wasn’t and we weren’t, and I had been keeping notes and had legal training - they tried to drive her mad. She was woken in her bed every hour.

But because they didn’t understand long covid (and refused to listen to doctors who did - going so far as to threaten them away) they treated her, and us, like she was mad, or criminal, or both.

This all presented (and was badly worsened by ignorant clinicians) post a Covid infection. My delightful healthy happy child felled at 13, at the beginning of adolescence.

Testing showing severe autonomic damage; bowels that failed to move at all for (at longest) four months; vomiting everything consumed; a bladder that would not spontaneously empty despite being filled over 1 litre; a gallbladder that didn’t want to work.

Long COVID and Society – new forthcoming book Today (15 March 2025) is International Long COVID Awareness Day. This is a day to recognise the continued suffering of people living with Long COVID in a society which tends to negate or ignore the…

A new blog post for #LongCovidAwarenessDay (today) describes my forthcoming edited book ‘Long COVID and Society’

simplysociology.wordpress.com/2025/03/15/l...

Thank you. Me too. Sorry (and hopeful for better) for my poor girl and always learning.

I honestly think this is a concerted and effective approach.

Outside of my daughter, I only know one person more harmed by dismissive narrative these speakers reject (perhaps you don’t know who they are).

I also know that 99% of clinicians have no idea about long covid; I completely trust these speakers to dissuade them of a psych/GET treatment approach.

Don’t miss this important seminar, which will challenge the myth that Long COVID is a ‘functional’ condition rather than biological

www.kirby.unsw.edu.au/events/long-...

They haven’t. Most doctors don’t even know it’s a thing.

Read. Think. Don’t just react.

Hear fucking hear

Thing is Kate - who’s it aimed at?

Or are we just happy with continually shouting into echo chambers?

This.

I can’t believe people don’t get it.

Perhaps they need more engagement with the Australian Public Health System because most of them know zero about the toll of long covid and are happy to commit to any mention of it being psych; they have no idea how to treat and psych bin is easier.

Serum Spike Protein Persistence Post COVID Is Not Associated with ME/CFS Background/Objectives: According to the World Health Organization (WHO) and Centers for Disease Control and Prevention (CDC), an estimated 3–6% of people suffer from post-COVID condition or syndrome (...

MDPI: “Serum Spike Protein Persistence Post COVID Is Not Associated with ME/CFS”

“this study provides further evidence for serum spike persistence in a subset of individuals after SARS-CoV-2 but found no association with ME/CFS or symptom severity”

www.mdpi.com/2077-0383/14...