Thread by @ASlavitt

COVID Update September 7: The best way to overview what’s going on w people w long term #COVIDー19 symptoms is to let people with #LongCovid speak for themselves.

And I gave a few things to say too. 1/

As with many viruses, some people experience symptoms long after their initial diagnosis. Known as #longhaulers, it can be rough going as symptoms can impact the nervous system, heart, lungs, gut, smell/taste, kidney, brain, immune system, energy.

Mental & physical symptoms.2/

Today I gave my account over to amplifying people’s stories.

And to my surprise that offended some people. 3/

Lots of experiences, ages, symptoms. 4/

The #LongCovid and #longhaulers hashtags provide lots more. 5/

There’s accounts like @long_covid too. 6/

If you’re one of these people, we are early in the process so the mystery is frustrating as you seek out answers. Since I am so fortunate not to be, listening is the most important thing I can do. 7/

Virologists like @angie_rasmussen study what happens to the host response (us) from the virus.

Much more is unknown than known. 8/

https://twitter.com/lemonadamedia/status/1303083129251528706

There are good pieces being written about what is known. 9/

bostonglobe.com/2020/08/31/nat…

10/

nature.com/articles/d4158…

Unfortunately there are cases of kids & highly athletic people impacted. 11/

undark.org/2020/09/02/kid…

The symptoms can be physical, mental or both. Either can be structural. There are also symptoms of depression & anxiety.
12/
nytimes.com/2020/09/07/hea…

As well as fatigue. Chronic or post exertion or periodic. And many concurrent people physical symptoms. 13/

guce.huffingtonpost.co.uk/consent?apidSe…

That creates another frustration. Well, opportunity for others. To be the COVID police. Many report people don’t believe their symptoms.

Plenty of people who need to question other people’s symptoms.

Some responses were so bad I won’t replicate them. 14/

People who judge other people’s pain from the school:

“Your heart surgery is no big deal. But my paper cut is a tragedy.”
15/

No I did not take a blood test from every person whose tweet I amplified today. Why? Because I believe them all.

Also: they are suffering.

And also: it’s none of my business. 16/

I realize that there are people who think every comment being made that makes COVID-19 bad is a political shot against the president.

In everything I’ve read, I haven’t seen one person suffering make a political point. They want to get better. And they want to be seen & heard.17

They also say: you’re moving the goalposts when you talk about long term symptoms.

Simmer down. Let’s review. It is decent to wear a mask & not breathe on people.

Whether it’s 2 week flu, 2 month long COVID, a chronic issue from COVID, or their life. Doesn’t matter. 18/

And if some people who have symptoms turn out to be not COVID, how are they to know?

If this bothers you, may I suggest you find a different hobby? I’m happy to provide a suggestion. 19/

I get it. You resent the “attention-seeking behavior” of sick people. Of course you do. It takes attention away from you. 20/

For people who aren’t feeling well, join an online group of people who will listen to you. And ignore people who won’t.

We all hate uncertainty & shut doors when we’re sick.

Some people have a lot going on & can’t right now. People show fear in different ways. 21/

Most importantly, many do get better. There are studies underway and being begun. There is a bill in Congress for an @NIH center in the US. And the UK is steps ahead. 22/

There’s a lot more we don’t know than we do. But if seems like at least 10% of people have symptoms that last at least a few months, possibly higher. 23/

Thanks to @angie_rasmussen & @Craig_A_Spencer for sharing what we know & don’t. Listen.

https://twitter.com/lemonadamedia/status/1303001357599862784

Our history of stigmatizing HIV, mental health, chronic fatigue syndrome, Lyme’s should end here.

Haven’t we got enough to do? 24/

Why don’t we just listen & make things better. /end