Our new night-active neighbor and my insomnia are deffo not compatible. Not even pills help. I can't believe our bad luck. One shitty neighbor getting replaced by even shittier ones. Or at this point, I believe this must be a curse.

How to un-curse ourselves?! Not even kidding, how does one do that!?

#LongCOVID #Insomnia #SleepDeprivation

Von @OttoKolbl (X und Bluesky) und mir eine Projektbeschreibung für die ME+-Datenbank. Ziel: eine Plattform für den Austausch zwischen Betroffenen u Infos/Stats/Daten für Journalist:innen u Forscher:innen. Gerne Feedback!

#MECFS #LongCovid #POTS #FQAD #MCAS #SFN #CCI #EDS

docs.google.com/document/d/1Tc…

Die ME+-Datenbank

Die ME+-Datenbank Otto Kölbl, Christina Koch Die hier beschriebene Datenbank ist erst im Projektstadium. Für uns ist wichtig, dass wir so viel Feedback wie möglich erhalten.

^{Google Docs}

"The current health and economic burden of long COVID may already exceed that of other chronic diseases and will continue to grow each year as more and more COVID-19 cases occur."

#Covid #LongCovid

academic.oup.com/jid/article-a…

It's Disability Pride Month, but honestly—I'm angry.

I use the elevator due to Long Covid, and I still get comments like "Just one floor? Take the stairs." Mostly from older, white, male coworkers outside my team. My direct colleagues get it. Others? Not so much.

Invisible disabilities are real. I'm tired of justifying my needs.

If you've faced this or have tips on handling it, please share.

@longcovid
@chronicillness
@spoonies
@disability

#DisabilityPride #InvisibleDisability #LongCovid

When I started The Disabled Ginger I sent it to my friends and family … as most of us do.

I was proud that I was finally standing up for disability rights. That I was taking my pain and putting it on the page in an effort to help others. That I had found something that lit a spark inside me.

Unfortunately, many of my friends didn’t feel the same way.

My disabilities are invisible, and I had become very good at hiding them. Apparently that’s what people expected of me, as they didn’t like this “new” version of Kelly.

Almost none of my friends subscribed. What’s worse, many stopped talking to me. Or would only reply in brief texts.

It’s almost been a year since I launched, and my circle is noticeably smaller. Many people I thought I was close with haven’t reached out for nearly 6 months.

When you find your purpose and your passion, it’s an incredible feeling. Hopefully people support you.

Not everyone will. And that’s ok.

It’s painful seeing so many relationships fade away. It hurts knowing they don’t see the value in me now that I’m “officially” disabled.

As painful as it is, it’s also a perfect example of why I became an advocate. Ableism is a huge problem. Being disabled can be incredibly lonely. I wanted to give a voice to those who haven’t yet found theirs.

In the process I’ve met incredible people from all over the world who inspire me to keep going. Who give me a reason to write every day. Who remind me of the compassion, love and goodness that’s still out there.

Thank you to each and every one of you. I couldn’t do this alone.

My latest looks at the reasons we hide, and what would happen if we all decided to stop hiding and show the world the realities of chronic illness:

disabledginger.com/p/why-are-c…

#chronicillness #longcovid #mecfs #ableism #disability #disabilityrights #eugenics

Why Are Chronically Ill People Forced to Hide Their Pain?

And what would happen if we stopped hiding and showed the world the depths of our suffering?

^{Broadwaybabyto (The Disabled Ginger)}

If you think mask bans are “no big deal” because there’s medical exemptions, please consider the following:

😷 Police are not doctors
😷 Many disabilities are invisible
😷 Disabled people don’t live in a bubble. I need my friends and caregivers to mask to protect me
😷 Everyone should have the right to protect their health, you shouldn’t have to already be sick to be permitted to mask
😷 Criminalizing masks sends a message that maskers are “bad”. It emboldens anti-maskers and increases odds of aggression

The reality is that mask bans are discriminatory, ableist and eugenicist. They push disabled people out of public spaces. They put marginalized and POC at increased risk of police profiling.

There’s no official policy for a medical exemption either, it’s at police discretion.

If you’re stopped and questioned, you will have to prove you’re masking for the “right reasons”

I’m more than willing to admit that if I were stopped by a cop for masking, I would appear nervous, shaky, tachycardic and probably “suspicious”.

Not because I’m doing anything wrong, but because my illnesses do not respond well to stress and the police are stressful.

It’s not right to put the onus on the masker to defend their right to mask. We’re still in a global pandemic. Texas has a measles outbreak. There’s tuberculosis in Kansas. Bird flu is spreading and it’s the worst year for influenza A in over a decade.

Masks are a public health tool. They’re a disability accommodation. They should NOT be criminalized.

For more on mask bans and medical exemptions, I wrote an article on the Nassau County ban here:

disabledginger.com/p/nassau-co…

#nomaskban #uspoli #texas #northcarolina #maskban #disability #uglylaws #publichealth #ableism #eugenics #h5n1 #measles #longcovid #covidisairborne

Nassau County, NY Makes Masking Illegal - Why Medical Exemptions Aren't the Answer

Defendants of mask bans point to medical exemptions as proof that disabled people have nothing to worry about. They're wrong. A look at why bans are ableist, discriminatory and dangerous.

^{Broadwaybabyto (The Disabled Ginger)}

Tomorrow will be a dark day for many.

For disabled, marginalized, LGBTQ+ folks & women. For anyone who still cares about others

The disability community saw this coming. It’s important we listen & understand that labelling people as expendable for 5 years leads nowhere good

Since November we’ve watched hate win over and over again.

We’ve witnessed the emboldening of those who think they’re superior to others.

We’ve seen an increase in misogyny, bigotry, ableism, racism & discrimination.

Disabled people begged the Left to pay attention. We begged you to keep masking, to push for clean air, to demand accountability from government.

We implored you to realize that our lives are not less important than your ability to go out for brunch.

Unfortunately, the vast majority of people on both sides of the aisle decided that mitigating COVID was “too hard.”

They accepted repeat infections as inevitable so they wouldn’t have to adapt their lives in any way.

They threw away people like me.

We let hate win. And now we’re going to see the consequences of that decision.

Disabled people weren’t surprised in November, we’ve been living in what feels like an alternate reality for years.

But I suspect others are about to feel our pain.

If you’re feeling scared or angry right now, know that you’re not alone. There’s a community standing with you.

I don’t know exactly what comes next, but I do know we have to keep up the fight.

disabledginger.com/p/how-did-w…

#disability #COVIDisAirborne #covidisnotover #uspol #ableism #eugenics #trump #pandemic #longcovid

How Did We Get Here and What Comes Next?

Disabled people have been warning others for nearly 5 years that eugenicist Covid policies would lead to a rise of fascist, racist, bigoted, misogynistic hatred. It's here now. So what’s next?

^{Broadwaybabyto (The Disabled Ginger)}

Great new art from design magazine / publisher Uppercase, in conjunction with World Health Network -- also check out Uppercase's incredible policy on Covid-safe interviews, meetings and conferences: uppercasemag.notion.site/COVID…

#LongCovid

Before you tell a disabled person that they need to “just make the healthcare worker mask”… please understand the imbalance of power that exists in hospital settings.

We can’t “just make them” do anything. If they refuse -our options are to take the risk or go without care.

There’s little recourse when a HCW refuses to mask - there’s almost NO recourse that exists in the moment.

You can file a complaint after the fact - but if the care you require is urgent or an emergency - that won’t help you

Imagine you’re taken to the emergency room with an urgent (or life threatening) issue. The doctor comes in and refuses to wear a mask.

Do you walk out? Throw a fit? These are not good options

Even if you manage to keep your composure and strongly advocate for them to reconsider - the longer you argue the more potential virus you’re being exposed to.

The more you “annoy” the staff - the greater the odds of retaliation or reduction in care.

This isn’t like telling a friend or a colleague to mask. The dynamic is completely different.

HCWs have the ability to help you or harm you. You want them on your side.

A note in your chart indicating you’re anxious, difficult, non compliant etc can follow you around and impact all your care going forward. Getting charts corrected and notes removed is a time consuming and difficult process

As a result many patients don’t push the issue. They delay medical care as long as possible and then just cross their fingers they will get a compassionate HCW when they do finally go.

These delays can also cause harm - and shouldn’t be necessary.

Hospitals have never been terribly safe places. They’re where the strongest and most resistant bugs thrive. They’re also where the sickest and most vulnerable people are.

At least before Covid it felt like hospitals were TRYING to prevent infection.

These days it’s as though any amount of infection control is seen as weak. People are actually bragging about how many times they’ve had Covid or about the risks they’re taking with their health. Staff aren’t masking even around babies, cancer & transplant patients

We have to change course. Our healthcare systems could barely handle the amount of chronic illness they were facing before Covid - they certainly can’t handle the constant influx of disabled patients and staff that Covid is causing.

This is why we need mandatory masks in healthcare settings. The responsibility to keep themselves and others safe should NOT fall on the vulnerable patient.

Many are unable to advocate for themselves - and others are unable to mask.

Mandatory masking protects everyone

Lastly - the solution to this problem should not be “don’t go to the hospital”. It’s not right to make ANY patient feel like they’re wrong for seeking care. Like they’ve somehow “failed” if they end up with Covid.

Until you’re facing a life threatening emergency or serious health challenges - you can’t possibly know what you would do.

Is it scary to go to the hospital right now? Of course. Is it also necessary? Absolutely.

Patients should never be blamed for needing care or for being unable to get HCWs to mask. The system is failing us - we aren’t failing each other.

If you need the hospital - you have all my love & support. It’s impossibly hard - and I will keep fighting to make it better.

As long as hospitals refuse to do what’s right to prevent COVID (hello clean air & mandatory masking)… the onus is unfairly on the PATIENT to avoid COVID.

My guide offers tips to reduce your risk of hospital acquired COVID (and other HAIs)

disabledginger.com/p/how-to-st…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

How to Stay Covid Safe When in Hospital

A guide to navigating the risk of hospital acquired Covid - as well as how to manage overall risk of nosocomial infections and hospital derived complications.

^{Broadwaybabyto (The Disabled Ginger)}

Ugly laws will be enforced in Louisville. Medical masks will be allowed at “police discretion”.

Police chief says: “We do have to look at behavior of person, what they're doing at time, those kinds of things."

I have a disability that makes me LOOK nervous. I “appear” like I could be doing something wrong. As a result these bans terrify me.

Disabled people have been begging others to mask for years because we were afraid of this exact outcome.

Failure to normalize masking means those of us who NEED to wear them are seen as outliers. Deviants. Possibly criminals. There’s a target on our back.

Medical exemptions are not the answer - they leave too many people behind.

Everyone should have the right to protect themselves from a deadly & disabling virus. Whether already disabled or not.

Banning masks and then saying that the police will determine who is “legit” in wearing one based on their overall behaviour? Its terrifying.

This is exactly HOW profiling occurs. These bans will disproportionately impact marginalized individuals and people of colour.

They could also impact someone with a condition like mine. I’m immune compromised and high risk for Covid complications - so I ALWAYS wear a fitted respirator when I’m outside my home.

I also have dysautonomia - a literal malfunctioning of my autonomic nervous system.

If I’m upright - I “look” nervous. I’m sweaty, shaky, twitchy and sometimes wobbling. I’ve been accused of being drunk in public on MANY occasions.

It’s not my fault - Dysautonomia means I can’t regulate my blood pressure, heart rate, sweating & even pupil dilation.

The things that cops are trained to look for and consider “suspicious” are all symptoms of my disease.

In the past - the worst thing I had to worry about was being accused of public drunkenness. Even THAT was scary for me.

Mask bans mean I could be arrested and charged with a crime. Just for trying to keep myself & others safe.

I tell this story to encourage others to speak up against mask bans. To mask up in solidarity and help us normalize them so they will be harder to ban.

To encourage people to stop assuming if you have a “legitimate medical reason” you won’t have to worry. We DO worry.

We need less judgement, assumptions and gaslighting and more allies. These laws are dangerous. They will lead to more death, disability AND division.

Many of us have difficulty convincing HCWs of our illnesses - what hope do we have with police?

Please - if you CAN mask - now is the time. You don’t have to wait for a mandate or permission. You can choose to say “enough is enough” & be part of the solution. Break chains of transmission. Protect the vulnerable. Don’t allow government to decide who is & isn’t expendable.

We all have power and agency and can choose to do the right thing. We don’t have to sit idly by and accept repeated covid infections & exclusion of disabled people from public life.

Let’s work together and stop these bans before it’s too late.

wdrb.com/news/louisville-polic…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #UglyLaws

I called EMS once and police showed up before paramedics (paramedics were busy).

The first thing they said? “You don’t look sick.”

They waited for paramedics who took me to hospital - but that initial response stuck with me.

It’s why mask bans are dangerous. Police aren’t trained to make medical decisions. They shouldn’t be the ones deciding who can and can’t legally wear a mask.

Many illnesses are invisible - you wouldn’t KNOW we’re disabled to look at us.

Most of us have experienced gaslighting from friends, family and even doctors - people are quick to judge and decide you’re “not that sick.”

So are we really expected to risk criminal charges by wearing a respirator & just HOPE police will believe we truly “need it”?

Not to mention that medical exemptions leave behind anyone who wants to mask to protect and preserve their health - as well as caregivers and family of disabled people.

We rely on them to keep us safe - we NEED them masking in public.

I sincerely hope more people join the fight against mask bans soon - because if we don’t fight against them - more cities and states will pass them and more people will suffer.

A good respirator is excellent protection against covid & other illnesses.

We shouldn’t be further excluding disabled and high risk people from public - but that’s exactly what these ugly laws do.

Call your elected officials - tell them medical masks can not and should not be banned.

Don’t embrace escalating fascism and eugenics just because you don’t think it will impact you.

Don’t celebrate it because you hold a grudge about mask mandates.

It won’t stop with disabled people. Help us now & your future self will thank you.

My full article on mask bans, medical exemptions and how we’re witnessing (and even welcoming) escalating eugenics and fascism: disabledginger.com/p/we-are-wi…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms #UglyLaws

🔗 Understanding Cumulative Risk -- The health implications of repeated COVID infections longshadowofcovid.substack.com…

@pandemicene

#LongCovid #CovidIsNotOver

@aquasscum
@DenisCOVIDinfoguy

Wie wäre es, wenn ihr hier auf Mastodon #LongCovid und #corona etwas ernster nehmen würdet!

Einmal pro Woche ein Tröt zum Abwassermonitoring wäre schön! Welche Varianten breiten sich gerade aus?

Eure Sprachlosigkeit erzeugt den verheerend falschen Eindruck, Corona sei kein Problem mehr...

Wie viele Infizierte entwickeln nochmal Long Covid? Wer hat ein erhöhtes Risiko Long Covid zu entwickeln?

Schweigen von euch. 🤨😷😬

Had a mild #COVID19 infection?
Doesn’t mean it’s mild.

#SARS-Cov-2 can behave like HIV or Polio. It can cause internal damage long after apparent recovery.

Mild initial infection does not = mild disease.

Multiple studies show this. #LongCovid
nbcnews.com/health/health-news…

Disability Rights New York has filed a class action lawsuit against Nassau County seeking an injunction to stop the enforcement of mask bans.

This is exactly the kind of action we need to see happen against discriminatory & ableist mask bans.

Law enforcement should not be the arbiter of who is “sick enough” to legally wear a mask. Many disabilities are invisible - and police are NOT doctors.

For more on the Nassau County mask ban and why it’s discriminatory - as well as why everyone (disabled or not) should be allowed to wear a mask - read my article here: disabledginger.com/p/nassau-co…

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

med-mastodon.com/@luckytran/11…

Nassau County, NY Makes Masking Illegal - Why Medical Exemptions Aren't the Answer

Defendants of mask bans point to medical exemptions as proof that disabled people have nothing to worry about. They're wrong. A look at why bans are ableist, discriminatory and dangerous.

^{Broadwaybabyto (The Disabled Ginger)}

I urge everyone to read this post from Lucky Tran about a proposed mask ban in Nassau County that would see people fined $1000 for wearing a mask. As soon as North Carolina passed their mask ban - we began seeing other cities and states follow suit.

Mask bans are wrong. Period. We are in an airborne pandemic where one of our best and only tools remains a well fitted respirator. The idea that people should have to carry around a medical exemption (which not everyone can obtain) or face fines and/or arrest is ableist and discriminatory. These bans force disabled people out of society because they don’t allow us to exist safely in public spaces - and they will increase the spread of Covid.

Call, email, post… speak out against these bans. Let lawmakers know you won’t visit any city or state that doesn’t allow people to wear a medical device for personal protection and community care.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #MaskBan #BoycottNC #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #NewYork #UglyLaws #NewJersey

med-mastodon.com/@luckytran/11…

New Leicester (UK) #MEcfs & #PostCovid study that is recruiting

Investigating the impact of ME/CFS & #LongCOVID on visual perception & sustained attention using Pupil Frequency Tagging & EEG

dougiebarrett.github.io/Lab/pa…
ME Research UK-funded

Not a biopsychosocial study

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Julia Doubleday (The Gauntlet) takes on that horrendous article on NPR:

"NPR’s decision to platform a piece about the difficulty of navigating life with a spouse who can’t dine indoors, instead of a piece about the difficulty of navigating a society that has made dining indoors unsafe for vulnerable groups, is just that- a decision, and a political one. It is part of an ongoing effort to cast those who cannot play along with the “back to normal” fantasy- those who are being harmed and killed by it- as weird, paranoid, crazy, annoying, and “the problem.”

Long COVID is a major thorn in the side of the “back to normal” approach to COVID. While some people (appear) to recover well from COVID, many others suffer long-term post-COVID health problems."

thegauntlet.news/p/disabled-pe…

#LongCOVID #AntiAbleism #CovidIsNotOver

Sharing for a friend. Please boost/repost!

Parent or teacher interested in a Covid safe school?! Centered in disability justice. One is forming in MA/RI, location TBD. Email for more info or with questions!

@disability @mcas
@chronicillness
@disabilityjustice
@education @neurodivergents

#Covid #MaskUp #LongCovid #Education #disability #justice #school #k12

"Oxygen extraction by the body’s tissues was compromised in patients who had symptoms of #exerciseIntolerance after #COVID"

"Patients are told that their symptoms are a result of deconditioning, or decline from lack of physical activity.
Our findings contradict that hypothesis."

#PostCovid #LongCovid #PEM #MECFS #corona #covid19

news.yale.edu/2023/12/19/study…

Study helps explain post-COVID exercise intolerance

Exercise intolerance is one symptom associated with long COVID. A new study helps explain its cause.

^YaleNews

SARS-CoV-2 attacks the mitochondria in cells, depleting their energy.

"researchers found that the virus blocks specific genes that use oxygen to create ATP, forcing the body to deplete finite energy reserves in the body. Without an energy source, cells throughout the body begin to starve, with the cells powering the brain and the heart suffering the most.”

news.unchealthcare.org/2023/10…

#LongCovid #Covid19

Researchers Show SARS-Cov-2 Infection Affects Energy Stores in the Body, Causing Organ Failure | Newsroom

An international research team, including Jonathan C. Schisler, PhD, in the UNC School of Medicine, has found how SARS-CoV-2 causes widespread “energy outages” throughout major organs, and how these effects contribute to debilitating long COVID sympt…

^{kpdaniel (Newsroom)}

"Study Finds There Are 4 Subtypes of Long COVID"

#LongCovid #research
Article here: prevention.com/health/a4243380…

Study here: nature.com/articles/s41591-022…

Important!

Share this article with everyone. It is outstanding

You May Be Early, but You're Not Wrong: A Covid Reading List, by
@JessicaLexicus

#Covid
#CovidIsNotOver
#LongCOVID
#MaskUp

jessicawildfire.substack.com/p…

You May Be Early, but You're Not Wrong: A Covid Reading List

Show this to your friends and family.

^{Jessica Wildfire (OK Doomer)}