ArianeK ๐Ÿ’œ #Care4Complex (she/her) (@arianek) 's Twitter Profile
ArianeK ๐Ÿ’œ #Care4Complex (she/her)

@arianek

Co-founder @Textillia! โœ‚๏ธ๐Ÿ’• โ€ข SFU Geog โ€ข Public health/urban planning/web nerd โ€ข #NeuroSjogrens โ€ข #Dysautonomia #Care4ComplexCanada โ™ฟ๏ธ๐ŸŒˆ๐Ÿ‡ฆ๐Ÿ‡ฒ๐Ÿฆ†๐Ÿถ๐Ÿ“š๐Ÿ––๐Ÿ’Œ๐ŸŒฟ

ID: 762991171

linkhttps://www.facebook.com/groups/care4complexcanada/ calendar_today17-08-2012 04:31:39

55,55K Tweet

3,3K Followers

2,2K Following

Naomi Harvey PhD #WearAMask (@naomi_d_harvey) 's Twitter Profile Photo

Harriet Carroll: Long Covid Scientific Consultancy I realised this a while ago. Our format of medicine doesnโ€™t work on prevention, itโ€™s based on waiting until people are severely ill, and only treating them then. People donโ€™t go from healthy to unhealthy overnight for most things, thereโ€™s a years long tail where theyโ€™re not right

Julie Sullivan (@curelongcovid) 's Twitter Profile Photo

๐ŸงตLast week, Dr. Lael Yonker's study using larazotide to treat gut permeability was published. This study was conducted on children with MISC from COVID-19. The study showed that the Larazotide helped clear lingering spike protein from the blood more quickly, eased gut symptoms

ArianeK ๐Ÿ’œ #Care4Complex (she/her) (@arianek) 's Twitter Profile Photo

Is there any point in me sending emails to local rheumatologists or neurologists to plead for help? My experience is that they NEVER break ranks with their colleagues, no matter how egregious their mistakes. And itโ€™s a โ€œsmallโ€ city, they all know each other, and would rather let

Stefanie Shea (@lilacmess) 's Twitter Profile Photo

It's so aggravating when people say "be the squeaky wheel". Husband and I have been making countless phone calls/sending messages for weeks. We always have to. I'm very ill, just trying to hang on, but it's always on the patient to try to keep everything in motion #PriorAuthHell

ArianeK ๐Ÿ’œ #Care4Complex (she/her) (@arianek) 's Twitter Profile Photo

Awesome. Another way for doctors to discriminate against severely ill complex patients. โ€œIVIG addictionโ€ my ass. Iโ€™ve got another new somatoform condition to invent out of thin air: โ€œReddit psychosis medical discrimination syndrome.โ€ How do you like the sound of that, you

Christine ๐ŸŒป Guenter (@christineguent8) 's Twitter Profile Photo

Itโ€™s just one BC ER Closure after another this long weekend. Where are our elected officials or are they on a permanent holiday? #BCHealthcareCrisis

Itโ€™s just one BC ER Closure after another this long weekend. Where are our elected officials or are they on a permanent holiday? #BCHealthcareCrisis
Ian is 1453 days w/o a covid incident and counting (@ianwrob) 's Twitter Profile Photo

Canadians have been told that getting regularly infected with SARS-CoV-2 is beneficial to their immune system because it is Kindโ„ข and Mildโ„ข and hybrid immunity is the best kind of immunity. It isn't, of course, but that's what Her Kindnessโ„ข says (or did, before disappearing).

Peter (@pstranges716) 's Twitter Profile Photo

The public transport ride share driver who picked me up a few minutes ago was wearing a N95. He told me he stopped masking because he hated being the only person doing it. Then he got C19 2X and has been masking ever since. Public health has failed us politically and ethically.

Kelly (@broadwaybabyto) 's Twitter Profile Photo

โ€œIf itโ€™s really that bad just go to the ERโ€ is not the helpful comment you think it is. Yes it is that bad. But if we went to the ER every time our symptoms flared, we would literally live there. Thatโ€™s chronic illness. We have to learn to tolerate the intolerable.

Leslie Kasza (@kasza_leslie) 's Twitter Profile Photo

For those who think "just a cold, any cold" viruses are no big thing, please read this thread. Maybe, just maybe, viral infections should be taken a little more seriously. Big thanks to the thoughtful, brilliant and humble Conor Browne

ArianeK ๐Ÿ’œ #Care4Complex (she/her) (@arianek) 's Twitter Profile Photo

Leslie Kasza Conor Browne Thatโ€™s how my whole illness started too. A severe GI infection on a family trip to Calgary when I was 7. I was never the same again. Every bad respiratory and GI infection just made things worse and worse until I turned 30 and it morphed into this autoimmune monstrosity. No

Neuro Sjogrens (@neurosjogrens) 's Twitter Profile Photo

Got POTS? Tired of trying to drink your way to a normal body fluid volume? It would be great if researchers would learn how to patch the leaks in your bucket. Ddavp/desmopressin/fludrocortisone can help some ppl somewhat, but not all. #PatchTheLeaks #Dysautonomia

Got POTS? Tired of trying to drink your way to a normal body fluid volume?  It would be great if researchers would learn how to patch the leaks in your bucket.  Ddavp/desmopressin/fludrocortisone can help some ppl somewhat, but not all.  #PatchTheLeaks
#Dysautonomia
ArianeK ๐Ÿ’œ #Care4Complex (she/her) (@arianek) 's Twitter Profile Photo

Do you ever just sit back and marvel at how so few of the people in power actually seem to understand wtf is going on, or how to improve things? ๐Ÿ™ƒ