Hey! Are you in the USA, near-ish to Virginia? Do you (or someone you know) have any of:

• hypersomnia
• complex sleep disturbances
• postural orthostatic tachycardia syndrome, or POTS?

Trials are open for treatments for these symptoms!

Those interested in participating in the trials can contact the clinic for screening to see if they are eligible. The team can be reached via email at covidtrialsuva@uvahealth.org, or by phone at 434-243-4008 or toll-free at 855-882-5334.

and they seem like good folks:

“We see patients coming in who are frustrated because they look fairly normal, but they cannot fully function and are not being believed,” she said. “So, for those people, I want to say this is truly a disease and you are not imagining anything.”

#COVID19 #COVID #LongCOVID #PwLC #LC #PEM #PostExertionalMalaise #spoonie #spoonies

(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

Kleiner Hinweis an alle, die bei der #Künstlersozialkasse versichert sind: Bedingt durch technische Probleme seitens der #KSK sind viele Künstler*innen zum 31.12.24 bei ihrer Krankenversicherung abgemeldet worden.
Brief meiner #Krankenkasse hierzu trudelte jetzt (!) erst ein. Checkt mal nach.

Voll gute Sache, wenn eins chronisch krank ist und gerade Rezepte für weitere lebensnotwendige Medikamente benötigt, um über das Wochenende zu kommen. Aussagen wie "Ja, nächste Woche sollen die neuen Daten von der #KSK kommen.. vielleicht..." helfen mir nicht, weil dann bin ich tot.
Mein Tag bestand also bisher aus: Schock. Herumtelefonieren. Verzweiflung. Panik. Und vor allem mit der Situation allein gelassen werden, weil KSK und AOK gerade "Da ist die andere Partei für zuständig, wir können NIX machen."-Ping-Pong mit mir spielen.

Wer lebenslang abhängig von Medikamenten ist, wird vielleicht ermessen können, was hier gerade abgeht.

Quelle: https://www.kuenstlersozialkasse.de/nachrichten/detail/uebermittlung-fehlerhafter-abmeldungen-an-die-krankenkassen

#chronischKrank #Spoonie

Update: Es gab einen sehr verständnisvollen Rückruf seitens der #KSK. Es gab eine technisch bedinge Stornierung bestimmter Accounts. Diese Stornierung wurde aber wohl schon wieder storniert. Was bei den Kassen eingegangen sein sollte.
Die engagierte Person hat jetzt meine Krankenkasse kontaktiert, um den Versicherungsstatus direkt zu klären. Ergebnis: "Oh, die Karte ist aktiv. Versicherung besteht. Whoopsie! Wieso? War was?"
Telefonate vor 1 Stunde mit der Krankenkasse: "Sie sind nicht versichert! Wir können auch keine Versicherungsbestätigung für ihre Ärztin ausstellen. Klären sie das mit der KSK. WIR können händisch nix machen!!"

Ich gehe jetzt.. existieren. Atmen. Hoffen, dass ich morgen meine Rezepte bekomme. Hoffe, dass anderen dieser Schock erspart bleibt. (Krankenkassenbrief ging am 28.2. raus. Wappnet euch eventuell.) Spoons für heute alle.

(Nebeninfo: Meine Arztpraxis hat heute geschlossen. Deswegen konnte ich da nicht um ein Privatrezept betteln, das ich - Vorschlag der Kasse - auslege und dann einreiche. Daumen drücken.)

Update (6.3.25): Arztpraxis konnte heute früh die Rezepte auf die Karte schicken, sind via Apo-App auch schon eingelöst. (Puh! Watt n Krimi. Danke an alle, die mental Händchen gehalten haben.)

Eben dann noch ein überraschender Anruf der Krankenkasse, eine der Damen, mit denen ich gestern telefonierte wollte mir persönlich die gute Nachricht mitteilen:
Die Daten der #KSK wurden plötzlich heute Nacht schon eingespielt, nicht erst nächste Woche. Fast (!) alle Datensätze funktionieren jetzt wieder. Versicherung für mich und mein Kind besteht durchgehend, Versicherungskarte funktioniert. 🙏

(Ich hoffe sehr, dass dieser Thread anderen Betroffenen hilfreich sein kann.)

Hey spoonies in the USA if you want to WFH for a company supporting non-profits: https://mstdn.social/@abbynormative/114106850091527064

#PwLC #spoonies #spoonie

I’ve lived most of my life without a patch of land to grow stuff in. Now, I have a square of sad, pointless grass. I’ve made the leap and planted some cold resistant carrots in a grow bag & made the first wild spring salad with dandelions just come up. May my spoons hold…I have plans. #gardening while #spoonie Any green thumbs in cold climes have tips for easy wins? I’m new at this. #orkney #Scotland #compost #allotment

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

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

My niece sent me this. New profile pic? These are definitely the kind I have. I wish I had that many, TBH. (And what a deal if you buy in bulk!) #spoonie #disabled

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

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

#disabled #spoonie friends, I have a question. A friend wants me to be one of her groomsmen. I use a rollator. Any idea how to spiff it up for a wedding? I'm thinking maybe a bowtie around the front bar? I don't think I want flowers. LEDs might be too distracting? Any suggestions?

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

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

Finishing mega article about POTS & Dysautonomia & feeling I’ve forgotten something

I tackle hydration, compression, lifestyle modifications, mobility aids, pacing, importance of rest, knowing your baseline and medications.

Anything I’ve missed? What do you wish you had known?

If you missed my introduction to POTS/Dysautonomia - it covers a lot of the bases. One reader took it to their doctor and it convinced them to order tests and pursue diagnosis!

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#pots #dysautonomia #longcovid #chronicillness #spoonie #covidisairborne #disability

Legal Advice for Chronic Illness Disability Claims

https://www.youtube.com/watch?v=hcfX2q6wCVA

Screenshot from MassME e-newsletter https://massmecfs.org/newsletters/909-2024-11-november-newsletter

#chronicillness #chroniclife #Spoonielife #Spoonie #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid @chronicillness
@spoonies
@disability

This week’s article was a tough one - mainly because I’ve been in a horrific and unrelenting flare that’s prohibited me from writing about what I wanted to tackle.

I’ve had to put multiple pieces on the back burner because my brain fog and other symptoms were too severe.

My inner monologue turned very cruel - constantly berating and gaslighting myself for being unable to get the articles done.

It’s hardly a surprise - because we aren’t taught to rest. We’re taught to push. To hide our pain. To say we’re “fine” and smile no matter how much we’re suffering.

We’re taught that worth is tied to economic contribution. That we’re cogs in the wheel of capitalism and that if we aren’t contributing we have no value.

As a result we play through the pain. We ignore what our bodies need because we don’t know how to truly rest.

We are overwhelmed with the “coulda woulda shouldas”… three of the most damaging words to someone living with chronic illness.

When you’re disabled - you can’t push as hard as other people can. You need to learn radical rest.

My own war with the ‘coulda, woulda, shouldas’ looks a lot like this:

😞 You coulda had a better day today if you had just been smarter yesterday

😞 You woulda been more productive if you had just done this differently

😞 You shoulda seen this coming. You’re stupid. Why didn’t you prepare better?

😞 You coulda stopped this if you only tried harder

😞You woulda had your article published if you focused more
You SHOULDA known better. When will you learn?

My article is about how to recognize the warning signs of an impending crash, learn radical rest and most importantly - throw the “coulda woulda shouldas” away once and for all.

https://www.disabledginger.com/p/its-time-to-throw-away-the-coulda

#chronicillness #disability #disabilityrights #spoonie #pem #brainfog #radicalrest #pots #mcas #Dysautonomia
#mecfs #longcovid #rest #gaslighting

“If you’ve been fighting for Covid mitigations for the last five years - you more than likely saw this coming. It was painfully obvious when the great unmasking occurred that many people on BOTH sides of the aisle didn’t care about the “vulnerable”. Didn’t care about community or protecting their neighbours. Didn’t care about anything other than their own ability to go to brunch, travel, socialize and get ‘back to normal.’

I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”

If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.

https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes

#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 #fascism #election2024

People spend their lives running from suffering. Doing whatever they can to avoid feeling pain. The idea of “forever suffering” is terrifying to them. I think this fear is behind a lot of the disdain we see directed at disabled people.

We remind others that suffering can be permanent. That it can’t always be outrun.

We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”

This reality scares the crap out of people.

As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.

When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.

People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.

They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.

https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide


#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

People are angry that hospitals are bringing back mask mandates due to COVID outbreaks.

Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.

Masks make sense in hospitals - why oppose them?

I’ve yet to hear a decent argument against mask mandates in hospitals.

The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?

Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.

If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.

Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?

The responsibility to stay covid safe shouldn’t be left to the patient.

It’s cruel and unusual punishment.

Mandatory masks mean that patients are protected by those around them - which is how it should be.

No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.

If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.

Vulnerable patients feel unsafe. Expendable. Terrified.

Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:

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

#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 #keepmasksinhe