Fantastic news! Long Covid research grants restored due to the efforts of advocates all over the country.

Never let anyone silence you or convince you that your voice doesn’t matter.

We all have power, and even those of us who are disabled can make a difference in our own way.

Speak up, demand accountability and work together. Change is possible!

https://thesicktimes.org/2025/03/28/update-recover-long-covid-pathobiology-grants-restored/

#uspoli #longcovid #nhs #hhs #covidisairborne #covidisnotover #chronicillness #disability

#MultipleSclerosis #chronicillness #chronicdisease

Long Covid will cost the economy trillions of dollars. The economic devastation of a mass disabling event can not be overstated.

Yet more funding has been cut, including to a project that was nearing completion.

The reason? Its a “waste of time”

The only reason to believe this is because you don’t care about Covid, you certainly don’t care about Long Covid and you’re preparing to leave the chronically ill behind.

https://cen.acs.org/policy/research-funding/NIH-cancels-RECOVER-grants-long/103/web/2025/03

#longcovid #chronicillness #uspoli #disability #covidisnotover #covidisairborne

Hey #RFKJr, you say you want to study #ChronicIllness. Well, I have one! It was caused by #COVID19, and now you want to close the office that studies #LongCovid? Forgive the technical terminology, Mr. Secretary, but rot in hell. https://fed.brid.gy/r/https://bsky.app/profile/did:plc:flwgfsh2mhpoqwjwwt2mesjv/post/3ll6ah6wczk2s

I love this yoga teacher for focusing on making yoga routines that are accessible to people with chronic illness and/or disability. Monetta Wilson is starting a 2-week bed yoga wellness challenge on April 1.

Check it out:

https://monettawilson.com/bedyoga

#yoga #disability #wellness #exercise #ChronicIllness

This is why respirators need to be mandatory in hospitals.

Babies, people with certain disabilities & some health conditions need others to mask to protect them.

This hospital shouldn’t be “scrambling”. Make masks mandatory & protect patients and staff.

Clean & ventilate the air too!

#measles #airborne #keepmasksinhealthcare #wearamask #texas #uspoli #covidisairborne #covidisnotover #chronicillness

I was an athlete for years. I did fitness competitions, trail running, mountain running, obstacle course races, interprovincial bicycling, hiking, and martial arts. I was a professional dancer, an aerialist, a model, and a LARPer. These days, I spend the vast majority of my time sitting down. I go to the gym a couple of times a week and try to go for walks every day, but if I exert too much or think too hard for too long, I'm exhausted.

This is not the normal feeling of being tired after a grueling workout. It's not a mind over matter thing. It's the kind of fatigue you feel when you're sick or dealing with a nasty injury. #LongCovidAwarenessDay #LongCovid #PostExertionalMalaise #ChronicIllness

Because of long COVID, my dad will never walk on the beach again. He can no longer play accordion or guitar because of long COVID.

Because of long COVID, I am no longer a martial artist, dancer, distance runner, or athlete. I no longer feel energetic. I no longer have proper restful sleep. I have aged rapidly. #LongCovidAwarenessDay #LongCovid #ChronicIllness

It’s International Long Covid Awareness Day, and my latest article looks at the reasons why people believe they don’t know anyone with Long Covid.

We desperately need increased visibility into this debilitating chronic illness so that we can raise awareness and fund treatments, mitigations and cures.

Anyone can get Long Covid. It’s not limited to ‘only the vulnerable’ or those who had a severe initial infection.

This disease does not discriminate. Even people with asymptomatic initial infections have found themselves disabled by Long Covid.

It’s time we start processing the trauma of the pandemic and stop living in denial.

We are in the middle of a mass disabling event, and the longer it takes us to admit that, the more people will be harmed.

Let’s spread the word that the only way to avoid Long Covid is to avoid getting Covid in the first place.

Wear a mask. Stay home when sick. Clean and ventilate the air.

When we all agree to care about the air we share, we can begin to bring about real change.

https://www.disabledginger.com/p/i-dont-know-anyone-with-long-covid

#longcovid #longcovidawarenessday #covidisairborne #covidisnotover #sarscov2 #chronicillness #wearamask

Inhaltswarnung: Looking to buy TRAINER epi-pens Zum Öffnen/Schließen klicken

I wrote a guest article for Healthy Debate that looks at why we need mandatory masks in healthcare, why surgical masks aren’t enough, and how the mounting threats to public health are putting lives at risk.

If you’re a healthcare worker, mask up.

Show us you take your oath to “do no harm” seriously

https://healthydebate.ca/2025/03/topic/wear-mask-plea-health-care-workers/

#covidisairborne #covidisnotover #longcovid #pandemic #publichealth #wearamask #n95 #measles #h5n1 #keepmasksinhealthcare #chronicillness #disability

(US) Telehealth Update

Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
https://massmecfs.org/newsletters/919-2025-03-march-newsletter

@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@longcovid #LongCovid #MEcfs
@mecfs

Here's the latest News in Brief (March 3 - 9), a weekly summary of ME/CFS and Long Covid news from the Science for ME forum:

https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-592734

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

Pandemics change people. We aren’t used to dealing with the mass death, disability & uncertainty that comes with them.

Unfortunately due to technology & misinformation, society is choosing NOT to process its collective trauma.

Most people are firmly in denial about COVID, and many are grasping on to conspiracy theories and harmful rhetoric in order to return to their 2019 version of “normal”.

That denial is changing us. Refusing to deal with trauma has consequences.

We’re becoming more detached, reckless and apathetic.

There’s still time to change. It starts with acknowledging that the threat has not passed and we all need to do our part to protect our health & the health of those around us.

We have to begin to adapt so that we can heal.

#pandemic #publichealth #trauma #chronicillness #longcovid #COVIDisAirborne #covidisnotover

Prior to Covid it was normal to mask in the NICU. People understood that premature babies are as vulnerable as they come and need to protected.

Now? Gowns & gloves but no masking.

The damage caused by anti mask rhetoric will be felt for years (possibly decades) to come.

Mask mandates belong in healthcare. We should be providing free respirators at the door & cleaning and ventilating the air.

If you’re a healthcare worker who doesn’t think you need to mask, please read my plea on behalf of vulnerable patients:

https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers

We know masks in healthcare stop the spread of airborne disease. We know they reduce the risk of hospital acquired COVID (which has a 10% mortality rate).

We know respirators work even better.

So why aren’t we masking? Why are patients having to bear the brunt of infection control?

https://www.disabledginger.com/p/we-need-mandatory-masking-in-healthcare

#covidisairborne #covidisnotover #longcovid #chronicillness #ableism #eugenics #keepmasksinhealthcare #disability

There’s measles outbreaks in multiple States now, and every time a new cluster is announced there’s an exposure at an ER

Why? Because that’s where the sick people go

It’s one of the reasons disabled people often say they won’t go to the ER unless literally dying.

They’re not safe places for us:

https://www.disabledginger.com/p/i-wont-go-to-the-er-unless-im-literally

#disability #chronicillness #disabilityrights #ableism #eugenics #healthcare #measles #COVIDisAirborne #keepmasksinhealthcare

There’s so much going on in the world that we can’t control.

The Covid pandemic gave way to rising fascism, just like the pandemics that have come before.

People are scared. Many lost loved ones. Society changed overnight. The loss of control that many felt allowed bad actors to rise up and capitalize on people’s fear.

No matter what our governments say or do, Covid isn’t over. It’s still killing and disabling people.

What’s worse, the pro infection crowd has become so loud and emboldened that vaccine uptake is down, masks are vilified and we’re seeing a resurgence of diseases like measles and tuberculosis.

Despite all the infectious disease threats out there, we still don’t have mandatory masks in healthcare.

The one place people absolutely can’t avoid, the place they should have a reasonable expectation of safety, has become one of the least safe public spaces.

Patients are being infected trying to access basic healthcare, because staff refuse to mask. Refuse to test. Refuse to isolate.

It’s eugenics, and we need people to realize it before it’s too late.

We need mandatory masks in healthcare. We must protect patients AND staff. We must protect even the ones who refuse to protect themselves.

https://www.disabledginger.com/p/we-need-mandatory-masking-in-healthcare

#uspoli #pandemic #publichealth #fascism #masks #n95 #chronicillness #disability #ableism #eugenics #covidisairborne #covidisnotover

from birdsite

My GI doc had ONE SLOT in 2024 -- ONE -- for my cancer screening & w/my genetic mutation, if you don't get annual screens, you are dead. Full stop. Please help! $60/~$2000

https://paypal.com/paypalme/karriehiggins
https://helphopelive.org/campaign/15968/
V: KARRIE-HIGGINS-2
Cashapp: $CatLadyHiggins

#ChronicIllness #Disability #MutualAid #Cancer

Patients have been bearing the brunt of infection control in hospitals, having to go to great lengths to protect themselves and their loved ones.

They’re unfairly judged, psychologized and mistreated for masking and/or requesting staff mask.

Covid is still here. It’s still killing and disabling people. We’re also seeing outbreaks of tuberculosis, measles and the worst flu season in over a decade.

Public health is being systematically dismantled and gagged by the Trump administration, allowing misinformation and disinformation to flourish and putting even more lives at risk.

Why don’t we have mandatory masking in healthcare? Why are we killing and disabling patients who go there for help? Who can’t ‘just stay home’?

The second article in my Masks in Healthcare series looks at patient stories, retaliation, and what we can do to make hospitals safer for everyone.

https://www.disabledginger.com/p/we-need-mandatory-masking-in-healthcare

#covidisairborne #covidisnotover #longcovid #sarscov2 #chronicillness #healthcare #keepmasksinhealthcare #wearamask #ableism #eugenics #disability

“Were they dying from Covid or were they dying from chronic disease?”

Easy. They died from Covid.

This idea that having a chronic disease somehow means that it’s ok that you died, or that you could have prevented your own death, is straight up eugenics.

I’m no less worthy of life than those without chronic illness. My chronic illnesses are not my fault. I can’t cure them with diet and exercise (believe me, I tried).

This is health supremacy and we need to call it out. When this behaviour takes root, the elimination of disabled people isn’t far behind.

We are ALL vulnerable to Covid. Placing blame on the individual and waving away millions of deaths as “oh well they had comorbids” is eroding whatever moral compass our society has left.

Mitigate the threat, and less people will die.

Clean air, better ventilation, mandatory masking in healthcare, isolating when sick, free and updated COVID tests and public health education on masks.

It’s time to save lives.

#covidisairborne #CovidIsNotOver #SARSCoV2 #longcovid #chronicillness #wearamask #disability #ableism #eugenics #fascism #rfkjr #uspoli

If you want to fight fascism? Wear a mask.

If you want to show solidarity with disabled people? Wear a mask.

If you want to protect your own health? Wear a mask.

If you recognize that no one is coming to save us? Wear a mask.

My ultimate guide to respirators looks at the early days of mask mandates, the rise of antimaskers, how to up your mask game for the ultimate personal protection and why we need to “fix our hearts or die”

https://www.disabledginger.com/p/were-witnessing-the-fall-of-public

#covidisairborne #covidisnotover #wearamask #n95 #uspoli #fascism #chronicillness #longcovid #h5n1 #publichealth #disability #ableism

It’s high time we start being honest about what’s behind a lot of the push towards “wellness”.

It’s ableism and eugenics. Its scared people who can’t face the fact that they could lose their health at any moment.

It’s people who desperately need to cling to control.

First of all I’m not at all opposed to a healthy lifestyle.

I was an avid hiker and yogi who followed a whole foods diet, did regular meditation and followed a lot of wellness influencers.

I still became chronically ill.

When the “wellness” activities didn’t cure me, that community abandoned me.

They looked at me as a failure. They believed I wasn’t “wellness-ing hard enough”.

If it were them, they would be getting better.

The root cause of this is ableism. Disability terrifies people.

The idea that there are conditions which won’t necessarily kill you but will rob you of your quality of life? Its scary.

Knowing there’s no treatments or cure? Terrifying.

But it’s not fair to blame the ones who are suffering. To scrutinize their past behaviour for signs that they brought it on themselves.

To hammer them with unsolicited advice and “tips” for things they could do if they really wanted to get better.

No one asks to be chronically ill. It just happens.

And everyone is one virus, infection, accident or stroke of bad luck away from it happening to them.

The odds that they will be the “exception” are incredibly low.

Let’s not forget that “wellness” costs money. A healthy lifestyle doesn’t come cheap

Disability is expensive. Nothing can prepare you for how devastating it is to spend every cent trying to stay ahead of your dwindling health, only to be told you’re not doing enough

Most of us can’t afford the lifestyle that wellness folks peddle. It’s big business. They’re not helping for altruistic reasons, they’re lining their pockets.

They don’t even care if their recommendations are harmful (and they definitely don’t care if they aren’t helpful)

Please, don’t blame someone for their disabilities. Don’t comb through their past looking for points of “weakness” that can absolve you of facing your own fear of chronic illness

No one is perfect. We’ve all done things that aren’t “healthy”. No one deserves chronic illness

If someone in your life is blaming you, know that you can set firm boundaries to protect yourself.

You don’t have to put up with that kind of gaslighting behaviour

I know it hurts, I’ve been there many many times. But you have the right to walk away

Remind yourself it’s not about you. It’s their fear of the unknown. Their fear of disability. Their own internalized ableism.

One day when they lose their health they will be forced to confront their false beliefs, and there will be a reckoning.
Until that day comes the best we can do is protect ourselves from the toxicity of people who can’t face the reality of our conditions.

We can fight for one another. We can support one another. We can be loud, visible and unashamed.

#disability #chronicillness #longcovid #mecfs #spoonie #ableism #wellness #Maha #eugenics #fascism #disabilityrights

RFK Jr. Is Already Taking Aim at Antidepressants
https://www.motherjones.com/politics/2025/02/kennedy-rfk-antidepressants-ssri-school-shootings/

Robert F. Kennedy, Jr has been planted by Trump in the role of Secretary of the US Department of Health and Human Services.

He wants to slash scientifically-established medication, hospital treatment, financial benefits, and government programs for people with these conditions:
- Chronic illness.
- Autism.
- ADHD, and medication including Adderall and Ritalin.
- Asthma.
- Obesity.
- Multiple sclerosis.
- Psoriasis.
- Mental illness such as depression and anxiety, and SSRI medication including Prozac and Zoloft.

RFK Jr says wants people who live with chronic illness such as those listed above — who often require daily preventative medication, a professional carer/assistant, or an assistive device for their daily functioning and to maintain their quality of life and sense of dignity and autonomy — to be stripped of their treatment and put into in "Wellness Farms" for "three or four years if they need it".

This is the sort of inhumane mistreatment of people requiring medical care that happened in the USSR and still goes on today in North Korea. It should not happen in the USA.

This move by RFK Jr is going to destroy childhoods, ruin families, cause people financial ruin, and for some people it will cost them their life.

#USPol #RFKJr #Trump #ChronicIllness #ChronicDisease #Autism #ADHD #Adderall #Ritalin #Asthma #Obesity #MultipleSclerosis #Psoriasis #MentalHealth #MentalIllness #Depression #Anxiety #SSRIs #Prozac #Zoloft

I see a lot of people saying now is the time to get out of the U.S. if you can.

Please remember most disabled people can’t leave. It’s incredibly difficult to immigrate to another country when you have documented medical issues. Many are also too sick to endure a move.

We must fight for them.

#uspoli #disability #ableism #fascism #eugenics #chronicillness

“You’re so lucky you don’t have to work!”

Disability IS a full time job. Only you don’t get paid. You don’t have opportunity for advancement. You never get to earn more money.

You spend every dime trying to stay alive. You live below the poverty line. You’re judged constantly.

I wish non disabled people would imagine how it feels to have your life grind to a halt with no expectation of improvement.

When you’re healthy, you at least have the possibility of earning more money. Of getting a better job. Of inheriting. Of moving forward.

That vanishes with disability.

We’re literally not allowed to earn money. Many of us can’t get married or cohabitate without losing our benefits.

We have to beg and plead for support that can be taken away at any moment, and are barred from doing anything to better our situation.

We live in a constant state of fear.

Fear of worsening health. Fear of a medical emergency that will wipe out our baseline, savings or both. Fear of being trapped with an abusive partner or caregiver. Fear of homelessness or bankruptcy. Fear of judgement and gaslighting.

We miss out on every day things that people take for granted.

I miss grabbing a coffee with a coworker. Being able to pop to the store for groceries. Being able to drive. Feeling safe in my body.

I miss my autonomy and freedom.

Being disabled can be a difficult existence. You don’t just lose your health

In many cases it destroys relationships, finances & hope

It’s not a vacation. It’s not something to aspire to. It’s not fun.

Please be kinder in the way you speak to us & be allies in the fight for better supports.

#disability #chronicillness #ableism #eugenics #discrimination #disabilityjustice

Recently I have taken to calling resting in bed as "radical resting", because genuinely trying to look after myself and properly rest in a world that sees you resting and thinks you aren't "trying", is a radical act.

#MECFS #ChronicIllness

This week I started using a chinstrap while sleeping, making my CPAP therapy more effective. I think I’ve caught up on my sleep deprivation because I don’t feel tired 🤯🤯🤯🤯 Do normal people always feel this good???? #CPAP #ChronicIllness

How many people are currently suffering at home because they know they need the hospital but are afraid to go because of risk of COVID?

Why aren’t we controlling spread?

Hospital acquired Covid has a 10% mortality rate, yet most HCWs won’t mask

https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers

#COVIDisAirborne #covidisnotover #keepmasksinhealthcare #safehealthcare #sarscov2 #chronicillness #longcovid

New here? Struggling with Long Covid or think you might have Long Covid?

I’ve written a series of guides about two of the most common and difficult to diagnose comorbids: POTS and MCAS.

If you’re newly diagnosed or undiagnosed, if you’ve been told it’s “all in your head”… read on! 🧵

#LongCOVID #covidisairborne #covidisnotover #chronicillness #spoonie #pots #mcas #mecfs #Dysautonomia #eds #disability #ableism

A number of executive orders are going to cause direct harm to the disabled community … but please don’t miss this order which will harm non profits & advocacy orgs.

Apparently non profits can now be punished for attempting to correct misinformation - because the corrections infringe on Freedom of Speech.

These organizations need to be able to counter disinformation in order to ensure patient safety.

We are experiencing record rates of disability and punishingly long wait times for healthcare.

Not all conditions are well understood even by the medical community, so patients turn to social media and advocacy organizations for help

There’s already many harmful lies and misinformation swirling around about chronic illness, and if we put orders in place that punish those who seek to correct the information, it’s the patients who will suffer

They will be left with nowhere to turn, especially in the event that the doctor they see also repeats harmful misinformation.

They could end up enduring setbacks or permanently altering their baseline as a direct result of bad information disguised as “help”

We appear to be careening into an information blackout, where all someone will be able to access will be misinformation & disinformation.

Consider who that benefits & who it harms, and then help us fight back. Get on the phone and tell legislators you vehemently disagree

https://www.councilofnonprofits.org/files/media/documents/2025/chart-executive-orders.pdf

#uspoli #disabilityrights #disabilityadvocacy #ableism #chronicillness #executiveorder

#disabled #disability #invisibledisability #invisibledisabilities #disabilityrights #visibility #chronicillness #chronicallyill #longcovid #fibromyalgia #mentalillness #mentalhealth #mentallyill #ptsd #complexptsd #cptsd

Now more than ever people have been conditioned to see disability as a moral failing. They believe people “deserve” their chronic illness or that they could “choose” to be better if they really wanted to.

This type of just world fallacy has always existed, because it enables people to move through life assuming nothing bad will ever happen to them as long as they’re “good people”.

It’s untrue, but as we’ve seen over the last five years most people have no problem swallowing lies if it helps them sleep better at night.

The reality is disability comes for almost everyone eventually. Unless you die suddenly and young, you will likely experience disability eventually.

You will have to face the fact that you are now one of the “others” that you looked down upon.

You will realize that no amount of “trying harder” can make you better. You will mourn your previous life.

It doesn’t have to be this way. We can stop blaming people for their illnesses and start helping them.

We can choose to wear a mask to protect our health and the health of others. We can clean the air. We can stay home when sick.

We can lobby governments for better COVID policy AND better social supports for disabled people.

We can demand accountability and transparency. It’s not too late.

https://www.donotpanic.news/p/the-arctic-plague-ship-that-disabled

#chronicillness #disability #ableism #longcovid #mecfs #spoonie #COVIDisAirborne #covidisnotover #sarscov2

The California wildfires are an example of how quickly you can lose everything. People have lost homes, possessions and some have even lost their lives.

Disabled people are the canaries in the coal mine. Anything that can impact others will likely hit us faster and harder.

When you don’t have your physical health, your resilience is impaired. Surviving pandemics, wildfires and natural disasters becomes much harder.

Why aren’t we factored into emergency planning? If our needs were accounted for, everyone would be better off.

My latest article looks at how we can (and should) be saving the canaries. How deaths like those of Anthony and Justin Mitchell should never have happened.

If no one is coming to save us, we need to start discussing how we can save each other:

https://www.disabledginger.com/p/disabled-people-are-the-canaries

#wildfires #california #climatechange #eaton #altadena #palisades #disability #disabilityrights #ableism #emergencypreparedness #chronicillness

A doctor posted earlier that she saved a life because she believed her patient.

She described him as “strong”, a father, a firefighter. Someone who “wouldn’t complain for no reason.”

How can HCWs not realize this bias insinuates others DO complain for no reason?

I’m glad the man got the care he needed - as he had a life threatening issue that could have easily been blown off.

But what if it had been someone else? A disabled or marginalized women? Someone who’s homeless, has multiple complex illnesses or dealing with drug addiction?

Bias and misogyny are huge problems in medicine.

By this doctors own admission, they believed it to be serious because the patient was “not the type” to complain for nothing.

How can they not realize they’re insinuating there IS a type that complain for nothing?

The majority of people won’t go to the ER for funsies. They’re not complaining for attention - they’re suffering.

If they’re disabled? Odds are good they’ve been suffering for days trying like hell to avoid going to the ER.

But we don’t take them seriously. Why? Bias.

The tendency to dismiss, gaslight, downplay and ignore is always there.

The number of times I’ve gone to the ER and watched a male patient receive vastly quicker & more efficient care makes me physically ill.

It happens ALL the time.

The result? Patients like me don’t go to the hospital. We suffer in silence. We roll the dice with our health rather than be subjected to gaslighting and trauma.

It needs to stop because it costs lives - they’re just not talked about.

When someone with a complex chronic illness dies at home it’s unlikely anyone knows that they were debating medical care. That they would have gone in if not for the myriad of times they were ignored or abused.

Those stories never get told.

I have my own such story from when I had a hysterectomy at 24

I was discharged from hospital despite feeling “off”. I decompensated at home.

I went to the ER for help and was told I was “fine”. Asked “what do you want us to do?”

Told I was “overreacting”

Two weeks passed as I got sicker and sicker. Increasing pain, swelling and fatigue.

I couldn’t eat, walk or function. I was pale and listless and had stopped checking phone or email. I was not “fine”

Yet it took 4 trips and a man coming with me to be taken seriously

I had been bleeding into my abdomen & a large life threatening infection had developed.

Yet I wasn’t believed. I wasn’t listened to.

After 3rd ER trip yielded no results I was adamant I wasn’t going back. I wanted to die in my own bed

The man who took me in saved my life

I could have become a statistic. Bled to death at home because ER told me repeatedly that I was “fine”

They told me this without running single test. They wrote me off the moment I walked in

We must change the culture. Listen to patients. Treat them equally. Lives depend on it
Patients with life threatening medical emergencies should not have to be “strong & tough” young men to be taken seriously

I shouldn’t have needed to bring a man to the ER for them to finally run tests. Patients deserve to be listened to… ALL patients:

https://www.disabledginger.com/p/my-most-dangerous-er-experience-and

#chronicillness #disability #spoonie #ableism #bias #misogyny #discrimination
#medicaltrauma

Opinion: A Call for Unity to Fix a Broken Health Care System: A health care professional with chronic illness urges bipartisan action to address high costs, insurance barriers, and mental health gaps – Columns https://www.byteseu.com/616822/ #ChronicIllness #Health #HealthCareReform #LuigiMangione

This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.

Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.

#Disability #Wheelchairs #DynamicDisability #ChronicIllness #MEcfs

New introduction post - joined in Nov 2022 (as many did) and back now after a hiatus. I write about Covid, disability justice, ableism, eugenics, the experience of being chronically ill during a pandemic and life, loss and grief. Looking forward to connecting with people here again! #CovidIsNotOver #COVIDisAirborne #chronicillness #Ableism #DisabilityJustice #WearAMask #MaskUp #CleanAir #DisabilityRights

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)

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

If you’re looking for resources to assist someone new to Long Covid, ME/CFS, POTS or MCAS - I’ve been slowly building guides that I hope will assist patients, caregivers AND healthcare workers who are willing to read them.

I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.

People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.

If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!

Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!

https://zeroes.ca/@broadwaybabyto/113615351711064251

#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability

My mega guide to living with POTS/Dysautonomia is here!

I cover everything I learned the hard way over years of living with this condition.

Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.

Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.

It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.

Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.

My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:

https://www.disabledginger.com/p/learning-to-live-horizontally-your

#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne