Thread by @__Granuaile__

SO much continued infighting in the community.

Same old narratives purposefully pushed to drive division.

#LongCovid patients speaking about their experiences, need for treatments & funding being hijacked by others.

I'm so over all of this.
1/5

I have #LongCovid caused by a Sars-cov-2 infection early 2020.

I want research & treatments focusing on Sars-cov-2 as THAT is what has led to the vast damage to my body.

2/5

Wanting research & treatments to focus on the ONE thing that initially caused/continues to cause damage to me does NOT mean that I'm "against" those with other conditions.

It's not wrong of me to want Sars-cov-2 specific research!
3/5

+57 months of Long Covid.

I have organ damage, cardiovascular, pulmonary & brain damage. Had strokes & have 4 inoperable brain aneurysms.
I've been told by docs i could have another stroke at any time or aneurysm rupture & nothing can be done to save me.
4/5

The urgency for treatments hits MUCH different when you have actually had teams of doctors sit you down & tell you your odds of dying at any moment.
50-70%

I'm not just being dramatic when I say without treatments to stop cardiovascular damage & inflammation I'll die.
5/19

I have continued clotting.
Still a stroke risk.
Stage 3 hypertension, hyper-POTS.

Just had to quadruple one of my bp meds recently bc my bp wasn't staying regulated.
Lots more svt on my implanted heart monitor too.

No cardiovascular conditions prior to Covid btw.
6/19

The delay has already caused irreversible damage thus far.

I've been severely disabled by Sars-cov-2 & Long Covid.

I will never "recover".

My only hope is for treatments to stop further damage & delay my death just a few more years.
7/19

Wanting Sars-cov-2 specific research doesn't mean I am in any way "against" those who have other conditions or that I don't want research & treatments for other conditions as well.

What weird fucking narratives.
Just stop all this nonsense.
8/19

Do these narratives spill over to those with conditions other than those with Long Covid?

Do people accuse folks with cancer with being "against" them for wanting cancer research & treatments?

No, bc that'd be wrong.
9/19

My saying I want research & treatments for Long Covid & funding alloted for such things to go to these things does NOT mean I don't want research & treatments for those suffering other conditions!
10/19

I want everyone in the community to get proper funding, research & treatments for their conditions!

What I don't want is to see resources taken from one group that will directly lead to greater suffering & deaths of another.
11/19

You have "x" condition?
Ok, get specific funding, research & treatments for THAT.

Leave Long Covid folks alone.
Take your division, hate & accusations elsewhere.
Stop taking funding from other disabled folks.
It's gross & wrong.
12/19

You want to hijack LC research for YOUR condition to ease your symptoms of "xyz".

I want research to stop my blood clotting, brain damage & neurological deficits.
I'm literally fighting off death every day.

We are NOT the same.
13/19

Honest questions-
Do you have a high chance of dying if you do not receive effective treatments soon for your condition?

Are you continuing to suffer permanent irreversible organ, brain, lung, neurological, cardiovascular, bone & muscular damage due to your condition?
14/19

I'm waaay past the point of JUST seeking treatments for these debilitating symptoms.

Fuck my symptoms.

I'm fighting like hell not to become more severely physically or cognitively disabled or die.

15/19

Though I dislike comparisons in advocacy, they're important to show need for urgency for treatments.

I'm not "belittling" your experience/condition by speaking about the severity of mine while advocating for myself, Long Covid & the need for research & treatments.

16/19

I've seen lots of belittling of suffering of LC folks & comparisons of sx, length of suffering etc as to why other conditions are "more deserving" of attention & funding
& offered as excuses as why it's "ok" to make money grabs for IACC.

Fuck all the way off.
17/19

How many of you have had a doctor tell you that without treatment soon that you will die?

My story isn't unique.
There are many in the LC community who have had these conversations with their hc providers.
18/19

Enough assumptions & bullshit.
I want Sars-cov-2 specific research bc my body has been destroyed by Sars-cov-2 & #LongCovid.
I'm not "new" to pain, suffering, chronic illness, disability nor advocacy. I'm not "against" anyone bc I'm focusing on LC advocacy.
19/19

There are folks literally reposting this thread in an attempt to call for MORE division, personal attacks against me & infighting from folks in the ME community.
Jfc.

Stop.

Fucking stop.

Instant blocks.

LEAVE ME THE FUCK ALONE.