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#chronicillness

35 posts25 participants2 posts today
Public
Broadwaybabyto

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.

disabledginger.com/p/i-dont-kn

The Disabled Ginger · I Don't Know Anyone With Long CovidBy Broadwaybabyto
#longcovid#longcovidawarenessday#covidisairborne
Continued thread
Public
ahimsa

More quotes:

"Check out other organizations that fight for Long COVID day in and day out including:

Black Long COVID Experience, COVID-19 Longhaulers Advocacy Project, Long COVID Families and Patient-led Research Collaborative, among others!

Share information, check out these groups, donate today!

Long COVID research care and treatments matter for everyone."

@longcovid

3/3

#LongCovid#MEcfs#Awareness
Continued thread
Public *
ahimsa

#MEAction has been fighting to protect the Long COVID Advisory Committee at HHS, which was recently dismantled.

In this video, five patient-advocates read an open letter to Health and Human Services Secretary Robert F. Kennedy Jr.

youtube.com/watch?v=hQn3kqyAT6

@longcovid

2/3

YouTube#MEAction Volunteers Read Letter To HHS Secretary RFK JR regarding Long Covid Committee & MoreBy The ME Action Network
#LongCovid#MEcfs#Awareness
Public *
Broadwaybabyto

Today marks the five year anniversary of Covid being declared a pandemic. Some things I want people to remember:

The threat is not gone. People are still dying and becoming disabled every single day

COVID is airborne. It’s always been airborne. Droplet transmission was pushed incorrectly & then doubled down on for economic reasons. If governments admit it’s airborne, they have to spend money upgrading air quality and providing respirators etc.

The only way to avoid Long Covid is to not get Covid.

A well fitted respirator like an N95 offers excellent personal protection

Mask mandates belong in healthcare

If you’re not masking for your patient, you’re abdicating your responsibility to do no harm

It costs nothing to open a window and it will improve ventilation and reduce odds of viral spread. Air purifiers work well too

COVID is a social justice issue. Masks, tests, air filters, paid time off… these things all cost money. The disease disproportionately impacts those who are most vulnerable and multiple marginalized

Repeat infections don’t make you stronger. They don’t give you immunity. They actually harm your brain, heart and immune system. They’re also NOT inevitable

Kids are harmed by COVID too. They need the adults to protect them. We need clean in schools and on school buses

We went “back to normal” for capitalism. It wasn’t because it was safe. It wasn’t because there was a cure. Governments and those in power Are willing to sacrifice us to keep end stage capitalism afloat a little longer

Repeat infections are NOT inevitable. We can still curb the spread. We don’t have to accept constant sickness and disability as our new normal.

May we be in a much better place five years from now than we are today.

If you know someone suffering from Long Covid, reach out to them. Ask them how you can support them. Remind them they’ve not been forgotten. Wear a mask for them. They are counting on you.

#covidisairborne#covidisnotover#sarscov2
Public
Broadwaybabyto

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

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