Cerebromicrovascular mechanisms contributing to #longCOVID: implications for neurocognitive health

https://link.springer.com/article/10.1007/s11357-024-01487-4

> This review investigates key pathophysiological mechanisms contributing to cerebrovascular dysfunction in long COVID and their impacts on brain health. We discuss how endothelial tropism of #SARSCoV2 and direct vascular infection trigger endothelial dysfunction, impaired neurovascular coupling, and blood–brain barrier disruption, resulting in compromised cerebral perfusion. Furthermore, the infection appears to induce mitochondrial dysfunction, enhancing oxidative stress and inflammation within cerebral endothelial cells. Autoantibody formation following infection also potentially exacerbates neurovascular injury, contributing to chronic vascular inflammation and ongoing blood–brain barrier compromise. These factors collectively contribute to the emergence of white matter hyperintensities, promote amyloid pathology, and may accelerate neurodegenerative processes, including Alzheimer’s disease.

#PASC #SARS2

I will never understand why more people aren’t angry and radicalized by the events of the last five years.

The anti mask, anti-vaxx crowd are angry… but they’re also terribly misinformed and on the wrong side of history.

Those of us with disabilities are livid … but we aren’t heard. We’re treated as even more invisible now than we were five years ago. An unwelcome reminder of Covid and the frail nature of the human condition.

But what about everyone else? The anti mask crowd may be the loudest, but they’re far from the majority.

Why aren’t the rest of you angry? Why are so many people content to accept and normalize mass death and disability?

An article came out in PBS today that puts the total COVID deaths at over 20 million.

20 million people. Those are fathers, mothers, spouses, grandparents, siblings and children. Each number represents a loved one to someone else.

Where’s the outcry?

400 million are dealing with Long Covid. That’s an obscene amount of people whose lives are forever changed. Who may never again know what it’s like to be healthy or exist in a body that isn’t rife with suffering.

Where’s the rage?

We know how to prevent covid. We’ve known for years. Yet rather than adapting our lifestyle and being humble in the face of a novel virus - we’ve given it the reins.

We’ve conceded defeat before we even put up a fight. Accepted repeat infections as inevitable. Shrugged our shoulders as we report more and more deaths. Aggressively minimized and disappeared those with Long Covid.

This should make you angry. It doesn’t need to be this way.

What would success look like? What would fighting back entail?

🫶Mandatory masking in all healthcare facilities (with respirators)

🫶Free tests and vaccines for everyone

🫶Better funding of anti virals and other treatments

🫶Clean air in all public spaces with transparent data visible to the public

🫶Clean air on school busses and anywhere that children congregate

🫶Paid time off for everyone who’s sick

🫶Free respirators in public places AND freely available to anyone who can’t afford precautions

🫶A robust public health campaign about how to properly wear a respirator

🫶A brutally honest public health campaign about the dangers of COVID. We have to stop treating it like a respiratory virus and make the public aware that it’s a multi system vascular virus with immune damaging capabilities

Doing even a few of those things would make a huge difference. Doing all of them would end the pandemic.

Get angry. Get loud. Demand better. Demand transparency.

Say that 20 million dead is not “mild”. That 900 dying every week in the U.S. is not “over”. That 400 million disabled will NOT be ignored.

#covidisairborne #covidisnotover #sarscov2 #longcovid #pandemic #cleanair #wearamask #disability #ableism #eugenics

https://www.wsws.org/en/articles/2024/12/31/zgyj-d31.html is *really* good for cautious & curious types. Lots of links like https://www.nature.com/articles/s41556-023-01096-x and explanation of how covid-induced DNA breaks lead to chromosonal instability and rapid cancer evolution

#COVID #COVID19 #CovidIsNotOver #SARSCoV2 #cancer #journalism #publicHealth

"What we have done is take something that should never have established itself in human communities in the first place and have built a public health consensus around the concept of repeated mass infection.

So, yes, this is what failure looks like."

from https://www.wsws.org/en/articles/2024/12/31/zgyj-d31.html

thinking about https://zeroes.ca/@datum/113734065186945325

#COVID #COVID19 #CovidIsNotOver #SARSCoV2 #journalism #publicHealth

Today in “Samuel Pepys’ Diary reimagined”:

“Not even in doctors’ surgeries and hospitals masks are mandatory anymore. Meanwhile, patients keep dying of hospital-acquired illnesses, including pneumonia and other airborne infections.”

https://babumenos.com/SPDR/#a2024-12-28

#MaskUp #WearAMask #COVIDisAirborne #COVID19 #SARSCoV2 #HAI

If you spent the holiday traveling, socializing etc with zero covid mitigations… You probably don’t have food poisoning. Or jet lag. Or allergies.

Covid is surging. RSV is too.

For the sake of everyone else - please stay home. If you can’t - wear a respirator.

Some of us spent our holidays alone. Isolated because no one will take precautions

Many of us have necessary hospital appointments and/or in person needs in the New Year

We don’t deserve to be infected because you took risks & then deluded yourself into believing you were “fine”.

Wear the mask.

#covidisairborne #covidisnotover #longcovid #sarscov2 #ableism #disability #wearamask

Today I heard the most disconnected justification for not masking

Someone told me their dad refused to mask because he wanted to “live his life fully”. He caught covid & died

This person genuinely seemed to believe that her Dad lived more fully than people who mask…because he died living the way HE wanted

Given they’re likely experiencing grief - I pushed back as gently as possible. I explained that you can do almost all activities while wearing a respirator - but you can’t live life if you’re dead.

There was zero recognition of the point I was trying to make. They stood their ground.

I don’t know how we reach people like that. They’re so entrenched in their beliefs that even losing a close family member wont shake their denial.

Because it’s an airborne virus - his choice likely harmed others.

Thats the reason I keep advocating. Your “freedom” to risk your health stops when it puts the lives of others at risk.

Perhaps you’re genuinely ok losing your life just to avoid wearing a mask - but don’t presume to make that decision for other people.

Masking is kindness. It saves lives.

#covidisairborne #CovidIsNotOver #sarscov2 #longcovid #wearamask #maskswork

"SARS-CoV-2 infection of salivary glands compromises the production of a secreted antifungal peptide with potential implications for development of oral candidiasis.

... Collectively, our findings provide mechanistic insights underscoring the oral cavities’ diverse susceptibilities to SARS-CoV-2 infection, prompting a reassessment of oral opportunistic infection risks and their potential long-term impacts on oral health."

https://journals.plos.org/plospathogens/article?id=10.1371%2Fjournal.ppat.1012375

#SARSCoV2 #FungalInfection #PublicHealth #CovidIsNotOver

Women and an unusually healthy cohort at greater risk of long-Covid, HSE study suggests

"#LongCovid is more common in ­Ireland among women and people who reported doing regular exercise before their illness, according to a new report."

https://m.independent.ie/irish-news/women-and-an-unusually-healthy-cohort-at-greater-risk-of-long-covid-hse-study-suggests/a1050583513.html

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC @covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
#auscovid19

New US research:

Neuroimaging markers of cognitive fatigue in individuals with post-acute sequelae of SARS-CoV-2 infection

https://www.sciencedirect.com/science/article/abs/pii/S0278262624001313

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

1/

Vaccination prior to SARS-CoV-2 infection does not affect the neurologic manifestations of long COVID

https://academic.oup.com/braincomms/advance-article/doi/10.1093/braincomms/fcae448/7920652

#CovidBrain #NeuroPASC @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver #auscovid19 @auscovid19

1/

UPDATED: Interior Health est.'d #COVID19 cases, wastewater #SARSCoV2 load.

According to #BCCDC ww. data: on average, from 11/29 - 12/5, there would've been 144 cases/day in Interior Health (⬆️ 101, 11/22 - 11/28).

https://anarchodelphis.tumblr.com/BCWastewater 4/5

UPDATED: Island Health est.'d #COVID19 cases, wastewater #SARSCoV2 load.

According to #BCCDC ww. data: on average, from 11/29 - 12/5, there would've been 57 cases/day in Island Health (⬇️ 76, 11/22 - 11/28).

https://anarchodelphis.tumblr.com/BCWastewater 3/5

UPDATED: Metro #Vancouver est.'d #COVID19 cases, wastewater #SARSCoV2 load.

According to #BCCDC ww. data: on average, from 11/28 - 12/4, there would've been 118 & 288 cases/day in the Van. Coastal & Fraser HAs (⬇️ 217 & ⬇️ 381, 11/21 - 11/27).

https://anarchodelphis.tumblr.com/BCWastewater 2/5

🧵UPDATED: #BritishColumbia est.'d #COVID19 cases, the same per 100,000 pop. by health authority.

According to #BCCDC wastewater #SARSCoV2 data: on average, from 11/28 - 12/4, there would've only been 632 cases/day in #BC (⬇️ 819, 11/21 - 11/27).

https://anarchodelphis.tumblr.com/BCWastewater 1/5

Dear @wesstreeting, as you'll be aware, the @UKHSA national surveillance programmes collect data on HCAI, including:
Bacteraemia
Clostridioides difficile infection
Escherichia coli
and MRSA.
⚠️But, not for #SARSCoV2 virus (COVID-19)?
Why? @covidinquiryuk
https://petition.parliament.uk/petitions/701396

If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.

They’re common comorbids and can have a devastating impact on quality of life.

New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?

These can all be caused by POTS, MCAS or a combination of both.

Mega thread of resources and guides below:

I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”

I shielded as soon as I was able (and haven’t been unable to stop).

I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.

Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.

We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.

Patients have to wait longer to see a doctor - and get shockingly little time with them.

Basically - we are truly on our own.

As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.

I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.

My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.

You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.

I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.

With that - the guides! (One per post below)

🧵

#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic

My latest article is about the shooting of CEO Brian Thompson and how NYC Mayor Adams seems poised to use it as an excuse to bring in a ban on masks (which he’s wanted to do for awhile).

Mask bans are discriminatory, ableist and put lives at risk.

We are still IN an airborne pandemic. Everyone - whether disabled or not - should have the legal right to protect themselves from infection.

People need masks for all kinds of reasons. Pollution, wildfire smoke, allergies AND Covid. No one should be forced to risk their health because a necessary medical device has been criminalized for absolutely no reason.

Make no mistake - these bans won’t stop crime. Studies have shown that sunglasses obscure identity more effectively.

The only reason to ban masks is to pander to those on the right still angry about mask mandates - and to make it easier for the government to surveil its citizens.

Ironically those who screamed the loudest about freedom and bodily autonomy during mask mandates are eerily quiet about mask bans - despite the fact that they represent escalating fascism and government overreach.

We really are on our own.

Please - mask up. Do it in solidarity with disabled people who NEED masks in order to safely access public spaces. Do it to support the Covid aware people who just want to avoid infection. Do it to send a message to the government that you don’t believe anyone is expendable. Do it to protect our right to mask in the future.

It’s not too late - but we must get loud, work fast and wear our masks.

https://www.disabledginger.com/p/nyc-mayor-wants-to-ban-masks-in-the

#maskbans #nomaskbans #noNYmaskban #covidisairborne #covidisnotover #sarscov2 #wearamask #respirator #brianthompson #luigimangione #ableism #discrimination #disabilityrights #disabilityjustice #maskup

Cancer risk? Scientists now concerned that #SARSCoV2 virus targets / interacts with 96 cancer genes— thereby “potential impact on pathways relevant to cancer affecting cell proliferation… favouring DNA degradation, preventing repair of damaging events”.

https://www.biorxiv.org/content/10.1101/2022.04.04.487020v1

UPDATED: #BC #SARSCoV2 variants.

NOTE: only 39 samples for most recent week; variant shares may be off

Of those:
XEC.*: 18% (⬇️ 32.1% of 187; ⬆️ 26.4% of 220)
KP.3.1.1.* (incl. MC.1): 59% (〰️ 59.4%; ⬇️ 62.7%)
MC.1: 10.3% (⬆️ 8%; ⬇️ 9.6%)

https://anarchodelphis.tumblr.com/BCVariants #COVID19

----------

Of the samples collected in B.C. on these weeks, the prevalence of significant variants/lineages are as follows:

- 11/17 - 11/23 - (≤50 samples; 4% threshold)
• XEC.*: 18%
• JN.1.11.1.* †: 71.8%
→ KP.3.* (only KP.3.1.1, MC.1): 59%
→ KP.3.1.1.* (incl. MC.1): 59%
→ MC.1: 10.3%

† 1 KP.3.3.2 sample counted as JN.1.11.1.*

- 11/10 - 11/16 -
• XEC.*: 32.1%
• JN.1.11.1.*: 67.4%
→ KP.3.* (only KP.3.1.1, ".3.3.2, MC.1 counted) §: 61.5%
→ KP.3.1.1.* (incl. MC.1): 59.4%
→ MC.1: 8%

§ 2 KP.3 samples & 1 KP.3.3.1 sample counted as JN.1.*

X.X.* in text = X.X & descendants.

X.X.* in graph = all descendants of X.X, except for ones that have their own segment of the week’s bar. Please see "Notes on Usage" section.

I can’t believe this needs to be said - but masks don’t kill people. Guns do.

I find it extremely concerning that the media reports about Luigi Mangione say he had a gun, ammo and “box of masks” in his backpack. As though they’re the same.

Masks are a personal protective tool. They can’t harm anyone else.

The U.S. has a terrible problem with gun violence. Yet whenever a mass shooting occurs and someone suggests banning guns - they scream about their right to carry & “freedom” to protect themselves.

How far we’ve fallen that people are more concerned with banning masks than guns.

Masks bans won’t stop crimes. All they will do is fuel hateful anti-mask rhetoric and make public spaces even less safe for disabled and high risk individuals.

If the “freedom” to protect oneself is truly of paramount importance - the right to wear a mask needs to be preserved.

If you’ve stopped masking - please mask back up. We need you now more than ever. Send a loud and clear message that masking should not be considered a crime - and that you refuse to contribute to the spread of a dangerous virus.

#nomaskbans #noNYmaskbans #covidisairborne #covidisnotover #luigimangione #brianthompson #ericadams #ableism #discrimination #disability #disabilityjustice #sarscov2

Ongoing #Evolution of #MERS-CoV, #Saudi Arabia, 2023–2024

Source: Emerging Infectious Diseases Journal, https://wwwnc.cdc.gov/eid/article/31/1/24-1030_article

Abstract
Middle East respiratory syndrome coronavirus (MERS-CoV) circulates in dromedary camels in the Arabian Peninsula and occasionally causes spillover infections in humans. MERS-CoV diversity is poorly understood because of the lack of sampling during the COVID-19 pandemic. We collected 558 swab samples from dromedary camels in Saudi Arabia during November 2023–January 2024. We found 39% were positive for MERS-CoV RNA by reverse transcription PCR. We sequenced 42 MERS-CoVs and 7 human 229E-related coronaviruses from camel swab samples by using high-throughput sequencing. Sequences from both viruses formed monophyletic clades apical to recently available genomes. MERS-CoV sequences were most similar to B5 lineage sequences and harbored unique genetic features, including novel amino acid polymorphisms in the spike protein. Further characterization will be required to understand their effects. MERS-CoV spillover into humans poses considerable public health concerns. Our findings indicate surveillance and phenotypic studies are needed to identify and monitor MERS-CoV pandemic potential.

____

#abstract #betacoronavirus #camels #coronavirus #covid #COVID19 #health #merbecovirus #mersCov #research #sarsCov2 #SAUDIARABIA #vaccine

Never underestimate the power of wearing a mask.

It’s an act of solidarity with disabled people.

It’s an act of resistance against governments trying to convince you the covid threat is over and that certain people are “expendable”.

It’s an act of compassion. You’re showing your unwillingness to be responsible for the death or disability of another person.

It’s self care. You’re protecting your health and the health of those around you.

We could have chosen to learn from the early period of the pandemic. We could have been excited about eradicating an entire strain of the flu - and adopted masking as a powerful public health tool.

Instead we made them political - and to this day people are willing to be repeatedly infected with Covid rather than do something different.

They cling to the narrative “we didn’t mask before Covid so why should we now?”

The answer is simple. When you know better - you do better.

We know Covid is a serious multi system virus that’s causing long term harm. We know a good respirator prevents catching or spreading it.

We need to adapt - and it’s not too late.

#covidisairborne #covidisnotover #sarscov2 #longcovid #wearamask #disability #ableism #cleanair

Lots of next gen vax news from @hildabast . No huge breakthroughs, but much progress.

For folks with bit hopes for mucosal vaccines:

"➡️ 5 mucosal vaccines are currently authorized for use, at least 1 in each of 6 countries. However, none have been authorized by a drug regulatory agency designated stringent, or listed, by WHO.
➡️ 31 mucosal vaccines have reached clinical trial, although some of the vaccines are no longer in development. The vaccines that have entered clinical trials are tracked in a table below.
➡️ In addition to the 5 authorized mucosal vaccines, 4 have reached phase 2 trials, and another 2 have reached phase 2/3 trial."

https://absolutelymaybe.plos.org/2024/12/03/a-bumper-month-for-trial-results-of-nextgen-covid-vaccines-update-23/

#SARSCoV2 #CovidIsNotOver

"The dysfunction of the cells could be a phenotype predisposing to LCS, but we believe it to be rather a complication of the acute disease. Moreover, this may be a possible explanation for the virus reactivations (EBV, HHV6),59 the frequent Streptococcal tonsillitis,60 or upper airway infections of children with LCS observed in our praxis and worldwide with the more serious influenza or RSV seasons."

https://www.nature.com/articles/s41390-024-03731-1

#CovidIsNotOver #COVID #COVID19 #SARSCoV2 #neutrophils #LongCovidKids #LongCOVID

Maybe one of the most interesting things to me, as a lay person, in https://www.nature.com/articles/s41390-024-03731-1 is as I read this a lab Dx for Long Covid in children is doable and distinguishes cleanly from convalescent children without Long Covid symptoms (Figure 4: D, K, and I).

I read this Nature paper as absolutely puting to rest claims that children aren't getting LC or that it's post-2020 trauma and so on. There's been other evidence before but I don't remember other gaps that were so clean.

h/t a half dozen zeroes.ca and other fedisci folks

#CovidIsNotOver #COVID #COVID19 #SARSCoV2 #neutrophils #LongCovidKids #LongCOVID

I mask in all indoor public spaces. This is to protect me, to protect others, & to avoid contributing to *HUGE* NHS waiting lists. I got an autoimmune disease from the flu at 21, but Covid is particularly good at leaving lasting health issues and continues to ruin health on a massive scale.

#Covid #Ffp3 #CovidIsNotOver #CovidInformed #SarsCoV2

Whenever I catch up on the UK Covid inquiry - I’m horrified by how much denial and ignorance is on display.

By the fact that they’re discussing the death and disability of millions - yet continue to refer to the pandemic in the past tense.

The only mask I’ve seen was on Cathy Finnis - a clinically vulnerable patient who testified as to how difficult it is to access safe care. No one else in the room masked to protect HER.

Perhaps the most galling example of denial is this video of Matt Hancock - where he talks about the importance of vaccination because without it healthcare workers may unintentionally infect someone in their care.

They’re literally infecting people in their care now. The NHS has discouraged healthcare workers from testing - and IF they do test positive they don’t have to isolate. There’s no requirement to test negative before returning to work. They can treat patients knowing they have covid - and they aren’t even required to wear a respirator.

Hospital acquired covid has a 10% fatality rate and yet many facilities are doing absolutely nothing to protect the most vulnerable among us.

Patients like me didn’t ask to be clinically vulnerable. We didn’t get a choice in being high risk. We can’t “stay home” from the hospital. We go for life saving care - only to have our lives and baselines put at risk because no one is mitigating the spread of Covid.

It would be so easy to mandate masks in healthcare. To upgrade air quality and ventilation to reduce the spread. To have regular testing and ensure those who are positive are isolated.

They just don’t want to. We’re acceptable losses. Expendable. Not worthy of protection.

After all - how many times have we heard “only the vulnerable are at risk” as a means of justifying a whole host of risky and unjustifiable behaviour?

At this point I find it hard to say that infecting patients is “unintentional”. I desperately want to give people the benefit of the doubt - but we are five years into this and we KNOW it’s airborne.

If you’re working in healthcare and choosing not to test, isolate or mask - is it unintentional when you infect a patient? Or inevitable?

These questions keep me up at night.

I feel absolutely sick knowing people like me can no longer access safe healthcare. I feel deep unyielding pain when I think of all those we’ve already lost. I feel anger and rage when I consider how easy it would be to change course - and how few people care enough to even bother to try.

We can do better. We must do better. We all share the air - we’re not safe until everyone is safe.

#ukcovidinquiry #masksinhealthcare #sarscov2 #pandemic #covidisairborne #covidisnotover #keepmasksinhealthcare #WearARespie #ableism #eugenics #disability #clinicallyvulnerable #LongCOVID #chronicillness

Enhanced immune #evasion of #SARS-CoV-2 variants #KP311 and #XEC through N-terminal domain #mutations

Source: Lancet Infectious Diseases, Correspondence, https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(24)00738-2/fulltext?rss=yes

{Excerpt}

KP.3, a subvariant of JN.1, has rapidly emerged as the dominant strain of SARS-CoV-2 in several countries, and has been designated as a Variant Under Monitoring. Previous studies indicate that the unique Q493E substitution in KP.3 Spike glycoprotein enhances its receptor ACE2-binding affinity and immune evasion, enabling it to outcompete KP.2.1–6 Notably, KP.3.1.1, which only carries one additional S31 deletion compared to KP.3, has surpassed KP.3 to become the new dominant strain globally (figure A; appendix p 4).7 Meanwhile, XEC, a recombinant variant of KS.1.1 and KP.3.3, shows strong potential to become the next dominant strain, rapidly expanding across Europe and North America. Compared with KP.3, XEC has only two additional spike mutations, F59S and T22N (appendix p 4). Both S31del and T22N introduce potential glycosylation on the N-terminal domain. Consequently, there is an imperative need to characterise the antigenicity and infectivity of KP.3.1.1 and XEC.

(…)

____

#abstract #coronavirus #covid #COVID19 #health #pandemic #research #sarsCov2

UPDATED: Metro #Vancouver est.'d #COVID19 cases, wastewater #SARSCoV2 load.

According to #BCCDC ww. data: on average, from 10/24 - 10/30, there would've only been 109 & 402 cases/day in the Van. Coastal & Fraser HAs (⬇️ 135 & ⬆️ 375, 10/17 - 10/23).

https://anarchodelphis.tumblr.com/BCWastewater 2/4

🧵UPDATED: #BritishColumbia est.'d #COVID19 cases, the same per 100,000 pop. by health authority.

According to #BCCDC wastewater #SARSCoV2 data: on average, from 10/24 - 10/30, there would've only been 812 cases/day in #BC (⬇️ 864, 10/17 - 10/23).

https://anarchodelphis.tumblr.com/BCWastewater 1/4

A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.

I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.

We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.

Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.

The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.

And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?

In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.

Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.

Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.

I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?

Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.

This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.

Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.

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