Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

https://www.jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots

Medical Costs & Housing

https://www.gofundme.com/f/9apnu9-medical-treatment

"In March of 2020 I was attacked on my way home from work.
The man grabbed me, shook me, coughed in my face & laughed ‘You’re sick now’
I thought it was a cruel joke. I was wrong.
I had contracted Covid & I never recovered.

I have been diagnosed with ME/CFS, POTS & MCAS.
I am mostly bed bound & barely able to manage the most basic of tasks.
I have no financial support from from family or government & no supplemental insurance.
I have been unable to work since, after over 2 years my savings have been wiped out & my hope of a spontaneous recovery has dwindled.
I’ve lost my business & my autonomy."

#Covid #LongCovid #MutualAid #Disability #MECFS #POTS #MCAS #CFS

I got the #flu in 1992. I ended up with postural orthostatic tachycardia syndrome, or #POTS. I've never fully recovered.

But sure, it's just the flu. No need to vaccinate anyone against THAT.

Inhaltswarnung: Supplements Zum Öffnen/Schließen klicken

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

Inhaltswarnung: ph, a little long, question please Zum Öffnen/Schließen klicken

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

I’ve been struggling to find the right medication for my #ADHD for the better part of 3 years. I’m either way too sensitive, my #POTS makes it impossible to try a med, or the side effects are not tolerable.

I did settle on one med that kind of helps my #ADHD and now (mild) ME/CFS - Modafinil. It’s 50/50 that it works on any particular day.

Now that I need steroids more regularly for my #RheumatoidArthritis, it’s caused a conflict with that treatment for my ADHD.

So what have I done? Gone back to my old vice… simple caffeine. Never a lot, always small doses, but it is working!! I’ll take it.

I find it super important to share these parts of my life as a #disabled and #neurodivergent individual because it helps normalize the complexities of our daily lived experiences. It’s part of the reason I’m back in University studying to become a Psychologist.

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

You had me at the opening line:

"Are you horizontal right now?" 🛌

This. I keep trying to explain to people that sitting in a chair is not resting. The energy spent while sitting upright is less than that spent standing (which is why I use a seat in the shower). But sitting upright still burns way too much energy to be considered a form of rest.

Gravity sucks.

#PwME #POTS #Dysautonomia #MEcfs

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

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

Sweden:
"Despite broad criticism, the National Board of Health and Welfare will not update its knowledge support on post-infectious conditions."

Google English translation:
https://fof-se.translate.goog/artikel/socialstyrelsen-underkanner-whos-kunskapsunderlag-om-postcovid/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from Science for ME update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS

“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

Doc: prescribes #POTS med. Take at night.

Me: *wakes up at 3 am* *wakes up again at 6 am* (repeat twice)

Doc: Let's switch it to morning.

Me: *hard crash at 2:30 in the afternoon* (repeat twice)

Pharm: It's a sedating med, we should switch it to nighttime.

Me: *kill me now*

Just *fuck* autonomic issues.