Marcia: life with severe ME is like screaming into the void Marcia is a person living with ME, amongst a range of other disabilities - here, she writes for the Canary about her life

My op-ed is out! www.thecanary.co/opinion/2025...
If you could share the op-ed everywhere you can that would be amazing!
#MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disability #immunedeficiency #Christmasmagic #Christmas #christmasmiracle #philanthropy #Canada #Canadian #longcovid
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New podcast episode, " The Fine Art Of Distraction " open.spotify.com/show/0oNLwzI...
#MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disability #immunedeficiency #Christmasmagic #Christmas #christmasmiracle #philanthropy #Canada #Canadian #Vancouver #genderbias #medicalbias

#longcovid
#sarscov2
#immunedeficiency
#lymphocytedisregulation

Medical supplies for home subcutaneous infusions of HyQvia IgG. Includes needles, syringe, giving set, and pump.

Infusion stand with HyQvia vial and pump at start of Infusion.

Today is a small milestone in my health management. Last home infusion with the support of a nurse. From now on, I fly solo every 3 weeks.

#cvid #cvidlife #cvidawareness #commonvariableimmunedeficiency #immune #immunedeficiency #immunoglobulintherapy #ig #scig #igg #hyqvia

My VTuber model was designed to embody my real life medical disability and experiences in a creative anime form. My favorite thing about my Rye VTuber model is undoubtedly my lifesaving bat pet, named... TikTok video by RYE_or_DIE

Lore drop highlighting my beloved, lifesaving plasma bat 🦇 named Plasma Spudnik! Check it out if you want to learn more about Rye, the plasma vampire’s background/lore! 🍞💜

www.tiktok.com/t/ZP8Bys5PY/

#promosky #immunedeficiency #cvid #vtuber #lore

open.substack.com/pub/thinkhor...

#PublicHealth #Healthcare #Decolonize #HIV #AIDS #CVID #ChronicIllness #ImmuneDeficiency #SouthAfrica #Health #Medicine #Patient #Diagnosis #Leftist #Politics #RareDisease #Disability #SocialJustice #ThinkHorsesNotZebras #PrimaryImmuneDeficiency

Come check out my 12 hour charity stream starting tonight at 6pm est. Hopefully my computer will have enough power to survive the entire stream. #ImmuneDeficiency #charitystream

A new post

open.substack.com/pub/thinkhor...

#PublicHealth #Healthcare #Decolonize #HIV #AIDS #CVID #ChronicIllness #ImmuneDeficiency #SouthAfrica #Health #Medicine #Patient #Diagnosis #Leftist #Politics #RareDisease #Disability #SocialJustice #ThinkHorsesNotZebras #PrimaryImmuneDeficiency

Automaton(tik) Automaton(tik) by Rory Du Plessis reconstructs the lives of 19-20th century asylum patients from sparse medical records, in order to re-humanise and dignify them. The patients were both individuals and in community. For example, the scholars Frederick and Gerhardus. Or the low-key trade unionists Timothy and James. Maybe they would have been my kind of people. Automaton(tik) reminds me of work I did for the pandemic response team until 2022. Ensuring accurate death statistics meant we combed through the lives and medical journeys of many individual patients. For example: - Female; - Born 2001; - Phillipi East, Delft or Hanover Park. I don’t quite remember. Or maybe I do but won’t say; - Antenatal Clinic visits in 2017 and 2020; - Chronic dispensing of TLD and fluoxetine; - Last viral load < 50; - Suppressed and adherent; - A young mother doing her best. No ICD10 code for that. Maybe Z65.9 other psychosocial?; - 2021 hospital admission with J18.9 pneumonia unspecified organism; - NHLS PCR positive for that virus; - Death I46.9 cardiac arrest; - No other cause specified; - A four year old and a one year old left behind. Who will care for them?; - Two different folder numbers with the same name, same address, same dates, same story. Told twice. Collapsed into one line for the report. Our only job is to record her as one death, not two, for the NICD. I bore witness alone in my kitchen. No time or permission to tell her story. She is protected by POPIA. Maybe even I saw too much. I did tell my pet rodents.

Pandemic memory reading automaton(tik) by @roryduplessis.bsky.social

#PublicHealth #Healthcare #Decolonize #HIV #CVID #ChronicIllness #Autoimmune #ImmuneDeficiency #SouthAfrica #Health #Medicine #Patient #Leftist #Politics #RareDisease #Disability #SocialJustice #Zebra #ThinkHorsesNotZebras

📅 Don’t miss it. Be there. Be legendary.

#XenobladeChronicles2 #VTuber #CharityStream #TwitchStreamer #RPGCommunity #ImmuneDeficiency #Fundraiser #JRPGFans #NoponTime #StreamWithHeart #BlueSkyGaming #BlueSkyStreamer #BlueSkyVTuber #SupportCreators #BskyGaming #BskyVTuber

Popular Vtuber Ironmouse @ironmouse.vshojo.com leaving VShojo, alleging they withheld hundreds of thousands from her favorite charity! #ironmouse #vshojo #vtuber #indievtuber #immunedeficiency

How to fumble the loss of one of your best talents over greed.

I wish mousy the best in her new found indie life. I know she’s going to be greater than ever.

Please support her and the immune deficiency foundation

#immunedeficiency #ironmouse #charity #support

🧬 Born With Zero Immunity

Subscribe to read more on www.pouringpotions.com

#SCID #SevereCombinedImmunodeficiency #BubbleBoy #NoImmunity #GeneticDisorder #RareDisease #PediatricHealth #BoneMarrowTransplant #GeneTherapy #ImmuneDeficiency #MedicalAwareness #ChildHealthMatters

Male who is #Latino, I am certain #SenatorPadilla had to Hold His Temper... We kept our son in the #CSUFChildren'sCenter until he was 6yo before starting Kindergarten. We knew he'd have #Dyslexia bc my Hub had All 3 types; & Hub's Dad had all symptoms. Our son was born w/an #ImmuneDeficiency so he

#Cdawgva is doing a cyclethon for the #Immunedeficiencyfoundation. I recommend you go check the stream out. The donations go towards helping people with #Immunedeficiency. You can #DonatePlasma instead of money (In some places they can even pay you for doing it) :D #charity #donate #plasma

Scientists Say NIH Officials Told Them To Scrub mRNA References on Grants - KFF Health News Two senior scientists say National Institutes of Health officials advised them to remove references to mRNA vaccines in grant applications, and they fear the Trump administration will abandon a promis...

I live with common variable immune deficiency. Traditional vaccines don’t work on people like me. We have no IgG, IgA, IgM, etc. to create antibodies.
mRNA vaccines use T-cells. It works on us. It could save all of our lives. But Republicans don’t care if we die.
#immunedeficiency #mRNA #vaccines

A shut down fills me with dread for gov workers. But this CR is a threat to what keeps my medical treatment coming. Gotta say NO and #ShutItDown #Disabled #ImmuneDeficiency #ImmineCompromised #ProtectSSA #ProtectMedicare #ProtectMedicare

Why Are People Wearing Masks in 2025? A Mental Health Professional’s Perspective

Because we f’ing have to if we don’t want to die.
#immunedeficiency #immunocompromised #cvid #stillcoviding

I promise you, my mask is not virtue signaling. #LongCovid #ImmuneDeficiency

Common variable immune deficiency (CVID) | Immune Deficiency Foundation Common variable immune deficiency (CVID), previously known as adult-onset hypogammaglobulinemia, is one of the most frequently diagnosed primary immunodeficiencies. It is characterized by low levels o...

Today is Rare Disease Day. I am one of millions of people living with a rare disease. Find out more about my condition #cvid
#dis #rarediseaseday #disability #chronicallyill #chronicallyawesome #immunedeficiency #illness @immunedeficiency.bsky.social

#rarediseases #immunedeficiency #primaryimmunodeficiency #chronicillness #womenshealth #defiant #cancersurvivor #womensmarch

Investigating SARS-CoV-2 and Its Link to Immune Deficiency Syndromes 🔬🧫

#COVID19 #SARSCoV2 #ImmuneDeficiency #Genomics #ResearchInsights

So why was that so difficult to offer in the first place?

I am SO tired of reasonable accommodation for #ImmuneDeficiency being treated as an option, not an obligation. #Disability #ChronicIllness #ADA

Walk for PI - Coast to Coast {{MetaTags.description}}

For the 8th year in a row, I'm doing Walk for PI for the Immune Deficiency Foundation. The Foundation is a lifeline for both new and established patients, as well as medical professionals learning about PI. #CVID #ImmuneDeficiency
give.primaryimmune.org/fundraiser/5...

Our 24 clinic here in ōtautahi #Christchurch has to message out that the wait is 6 hrs or longer every three days. And sometimes can’t take more patients. #covid #immunedeficiency

Seeing as that flu lurgy thing is writing people off.

Here are some things that can help your immunity.

As always it’s the simple low hanging fruits that have a big impact.

#immune #immunity #immunesupport #immunesystem #immunehealth #immunesystemsupport #immunedeficiency #immunefunction

Jack_Shippo - Twitch Immune Deficiency Foundation Charity Stream Marathon! (1st Time Playing!) - Day 3 (Day 5 - Unlocks at $1,000 Goal) | !donate !plasma !idf

www.twitch.tv/jack_shippo

My friend is streaming to raise money for Charity to support the Immune Deficiency Foundation, please help share and donate!!
#charity #idf #immunedeficiency #savelives