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Prof Gemma Carey, PhD MMedSci Profile picture
Prof Gemma Carey, PhD MMedSci
@gemcarey
Public admin, social policy, public health. Lots of NDIS @UNSW + non aca-author. Vax injured - formerly very severe MECFS. Views are my own
Jul 11 • 19 tweets • 3 min read
After a day of meetings with LC and disability researchers and community, I can't help but reflecting on how we have seen patient centred arguments emerge across so many fields and what this means for LC /1 The LC community share so much knowledge in online groups. They know what treatments seem to help/that some can hurt/what supplements and vitamins help them etc.

There is so much knowledge in those groups, often a great deal more than people get from their doctors /2
Jun 10 • 8 tweets • 2 min read
A wee thread on AIDS/LC parallels. Enjoy!

ncbi.nlm.nih.gov/pmc/articles/P… ncbi.nlm.nih.gov/pmc/articles/P…
Jun 2 • 7 tweets • 2 min read
I'm just going to write this so it's done and said.

My mother was diagnosed with stage 4 breast cancer - liver, bone, breast all at diagnosis. I moved in with her for a year and looked after her with my dad. It was heart breaking - I wrote a book about it. I lost her at 33 In all the time I cared for her I only saw her truly suffering once - in the hours before she died. And we had the pal care team, and we kept her sedated and comfortable. She lived a fairly normal life for the year she was dying.

I have been a severe MECFS/LC/VI patient
Jul 27, 2023 • 7 tweets • 2 min read
That thread went a bit viral.
General info here:

COVID reactivates latent viruses, vax injury too.

INFa, the part of your immune system that fights viruses, gets stuck on.

INF-gamma that fights pathogens becomes suppressed. Pathogens begin to accumulate, largely behind biofilm The body can’t see them to fight them, and is too suppressed.

Many are fungal infections. They use your minerals. This creates malnutrition. The body increasingly dysregulates as it fights too many battles without the nutrients to function properly.
Jul 26, 2023 • 6 tweets • 2 min read
Okay this is gross, but I feel like it's important for people to understand.
I was dying from a systemic candida infection and secondary malnutriton.
You could not see a single sign of infection on my body.

Then, we turned my immune system back on: Image it's time to talk about why steroids are dangerous in LC/VI. It's time to talk about the inadequate nature of serum testing (mine were pretty fine).
Feb 20, 2023 • 42 tweets • 7 min read
Alright I’m going to live tweet the fungus protocol…

You could never accuse this of not doing *something*. I feel like I have the flu … mixed with something else, a certain grossness like nausea but something else Today the world smells sick. The inside of my nose smells sick. Everything everywhere smells sick.
I do not have a resting bpm if 120