Katherine Senzee

3 (known) #Care4Complex deaths in 3 days, including 21 year old severe LC victim Samuel - this one is haunting me after reading his Reddit post. I wish there was a way to know and track which treatments every single person who does MAID or dies from complex/post viral illness has been allowed to try before dying, their effectiveness, and what the most predominant life ending symptoms were. (Could someone start tracking this? @JackHadfield14 @SalvMattera @PutrinoLab @royalhansen @manruipa @VirusesImmunity) Did they have GI and autonomic failure? Did they have hypocortisolism/hypopituitarism? Was it the insufferable sensory overload and crushing, toxic feeling PEM permacrash? Was it feeling unbearably on fire from MCAS and (usually undiagnosed) SFN? Severe nutritional deficiencies like thiamine, B12, iron, zinc, electrolytes? Undiagnosed autoimmune diseases like #NeuroSjogrens or some rarer neuroimmune disease like autoimmune encephalitis or PANDAS? I can go on. The problem is most are never tested for any of this, nevermind allowed to try any of the treatments for these conditions - conditions which once unentwined from the larger disease constellation labels, have actual treatment options that are already available today. Imagine if IVIG or Plex or daratumumab or Vyvgart, or something as simple as physiological hydrocortisone replacement or thiamine could measurably improve symptoms and even reverse disease progression - we know in many people there is an autoimmune component. Why not allow those who are at that point, who are ready to go through with MAID, at least try these if they want to? Better yet, let people try them long before they get to that point, so they aren’t as irreparably sick and can tolerate major interventions better. Many currently don’t have access to the more specialised testing, or to any palliative measures like nutritional support or IV saline. But why not allow people to try whatever is reasonable and accessible to them?! Saying it’s “too risky” to try IVIG or hydrocortisone or IV saline in someone who is going to die otherwise is ridiculous, and frankly a cop out on behalf of the medical establishment. Doctors and entire healthcare systems clinging to “evidence based medicine” so hard in an area where there has been inadequate research for years, are effectively condemning people to death who may actually have been treatable and don’t know it. Just because they were slapped with a label that implies someone is “untreatable”. They can’t even define what ME is right now because over the last five years it’s atomised into a constellation of more specific conditions - many of which are treatable, but nobody can access the treatments due to lack of access to expertise! When will our lives be valued, our suffering be valid enough to be given a chance? Especially those most severe - suffering so badly and dying while we wait for the medical establishment to catch up? Allow us compassionate use, off label n=1 trials, do research on us if we’re willing! Nobody should be dying never having even had what should be basic workups or treatment trials for these life altering and deadly diseases.

Please if anyone out there can help me access treatment - chronic GI infections (w/possible persistent EBV/CMV/Covid/vaccine injury), test proven autoimmune SFN / #Dysautonomia / #NeuroSjogrens / #MOGAD, nutritional deficiencies and malabsorption, severe osteoporosis, hypopituitarism/hypocorticalism, etc above, nearly bedbound now and going downhill every week. Cannot get any care locally. I am not okay. I need treatment urgently. We may be able to travel for a Hail Mary. No doctors in Vancouver will help me, I am approved for MAID, I don’t think I can last much longer going downhill like this, I can feel my body shutting down. Canadian citizen (west coast), husband also Belgian citizen, could travel to US max 6 months, Europe max 3 months without residence. Please help. cc/ @PutrinoLab @dysclinic @NeurologistMom @MichaelPelusoMD @OpenmedfCanada @polybioRF @microbeminded2 @VirusesImmunity

If almost all of the most severe Metabolic and Neurological #Sjogrens patients have negative SSA (and often even lip biopsy), but positive “Early Sjogren’s” antibodies and clinical criteria, how can we ever get proper care? So many severe Sjogren’s patients are seriously ill and under diagnosed, totally untreated, even dying and doing #MAID. When is the @ACRheum, @SjogrensOrg, @SjogrensCa and other global orgs going to finally update the diagnostic criteria and advocate for this medical neglect of “seronegative” patients to end? You must know the classification criteria continue to be inappropriately strictly applied in practice. Patients told they are just anxious or have fibromyalgia, while losing their lives. WE CANNOT WAIT ANY LONGER, PEOPLE (mostly women!) ARE DYING FROM THIS SEVERE, PROGRESSIVE, SYSTEMIC ILLNESS. HEAR US and HELP US NOW. #NeuroSjogrens #Care4Complex

I was just watching this adorable video about a rescue dog with medical needs, who just loved life and needed a bit of help to get another chance. And all I could think (aside from how cute she was) is, I LOVE LIFE TOO, I just need some help to get another chance! Although it sure was easier before my medical injuries, on days when my symptoms are bearable it’s still true. I never wanted to die a day in my life before I was seriously medically harmed and left to suffer like this. I applied for #MAID out of sheer desperation to escape the relentless suffering and medical abuse. Not because I wanted my life to end. I fought so hard to recover since then, and am still being shut out of care. So why isn’t there a human rescue, for medically neglected humans at risk of euthenasia, just like dogs? I am her, she is me. Don’t I deserve a chance too? #SaveAriane #Care4ComplexCanada #Care4ComplexBC #Care4Complex #BCPoli #CdnHealth #CdnPoli

Apparently the BC Healthcare system wasn’t even done with us for the week. I just saw on the #MillionsMissingBC IG that they’ve reposted an email from Ric Arseneau who runs one of the two main MECFS clinics in Vancouver (the other one he founded and left to run his own clinic), stating that the province pulled group medical visit support and they’re shutting down their very popular group visits program in a couple months, stranding THOUSANDS of patients who depend on them for care and prescriptions. I’m not a patient and frankly no fan of his, but this is so incredibly irresponsible and is going to cause so much harm to their patients. I don’t understand why this would be done with no alternative care options in place for all these patients. What is wrong with the @bcndp, @Dave_Eby, and @Josie_Osborne??? They are driving what’s left of the BC medical system into the ground, and totally abandoning even larger swaths of complex illness patients. This is just incomprehensible. From Millions Missing BC just an hour ago: “Nearly 6000 patients in BC are about to lose access to critical care and prescriptions. If our family doctors won't prescribe the medications our specialists have been prescribing, or if we don't have a family doctor, we will lose access to the lifesaving medications that often keep us barely functional but have introduced some level of stability into our lives. The NDP campaigned on increasing access to healthcare and not making any cuts - this horrific betrayal leaves thousands without care. Stay tuned. It's time to get loud.” #Care4ComplexBC #BCHealthcareCrisis #bcpoli #MECFS #LongCovid #cdnhealth

So, what is up with the huge discrepancies with how Track 2 #MAID assessments are being carried out? I’ve now heard from multiple people that their assessors stepped in to advocate for them to access care they desperately needed but weren’t getting. But in my case being assessed in Vancouver, I was just told “yep you’re approved, call us when you want to go through with it, no we don’t do that [advocate for patients to get care that would allow them to keep living]”. How is it acceptable or even legal that whether you get a chance to keep living depends on which individual assessor you get, or possibly what city you live in? How is it legal that I am being denied medical care or even palliative care, while being approved? It goes directly against the MAID laws, and is a human rights breach. I JUST WANT MEDICAL CARE. We shouldn’t have to blow up our lives and move while I’m this sick. We pay taxes. I have the right to have medical care. I don’t understand why nobody will help me. #bcpoli

This is actually gross to see. I’ve had to go to Washington numerous times the last year and a half for healthcare that I’ve been refused here in Vancouver, due to being a “complex” illness patient who the local system seriously discriminates against. Even basic care is refused to me here. And let me tell you, our kind neighbours south of the border do NOT appreciate us poaching their medical professionals to make up for our - your - failures. And who would want to work here anyway, when the standard of care, price of living, and quality of life are so poor. The care in Washington is a thousand times better than it is in BC, it makes us look like a joke. People here don’t even realise how bad things are. The BC medical system and its subpar “professionals” here have nearly killed me multiple times, and left me severely ill from medical injuries and malpractice, and approved for MAID, while refused even palliative care. The American doctors helped me when nobody here would, and all the local doctors do is mock me for having seen these world class experts south of the border. They won’t even read their recommendations for treatments that could give me some shred of my life back. I still can’t get medical care after trying for YEARS, due to the serious discrimination after having been nearly killed by the doctors and hospitals in Vancouver, despite working so hard to recover from what they did to me. I am still very sick and need medical care! After making this my home for almost 30 years, my husband and I are being forced to blow up our lives and flee to another province to try and get me proper medical care, leaving my senior citizen mom, our community, and the entire life we built. And I’m not alone, thousands of complex and rare disease patients in BC have no qualify of life or hope of ever getting real care because the medical system in BC is a dinosaur. There is no modern care and there is no compassion for people with more complex medical needs. I voted NDP for 20 years and you have FAILED us. You and your party and the medical system here are an embarrassment, I don’t know why anyone would want to work in it. You and all the healthcare leadership are a bunch of sociopaths who don’t care if sick and disabled people - even kids - die from INTENTIONAL medical neglect. Seeing this robotic speech from the minister of health @Josie_Osborne yesterday about kicking a disabled kid off lifesaving treatment just proved it. cheknews.ca/heartless-family… BC is not a safe place to live, and not even a good neighbour. You should all be deeply ashamed of yourselves and resign. #Care4ComplexBC #BCHealthcareCrisis #bcpoli

My 27 year old friend in Ontario did #MAID this morning. Nobody came to save her. She wanted to live, but couldn’t get the care she needed. She was medically neglected + abused into giving up, by this system that only sees us as a nuisance. RIP sweet girl. 💔#Care4ComplexCanada

There NEEDS to be some kind of safe houses/care homes for severe #Care4Complex patients whose families are abusive (or who don’t have family). And I’m not talking about institutionalised hospital settings that only make us sicker. Nobody this sick should be abused like this.

This post + entire comment thread are GOLD. #MedTwitter please read this. The hours + money wasted going around in these circles as complex patients lose YEARS of our lives having our very real medical issues dismissed… I’m grateful some doctors and researchers are speaking out.