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Emma Doty

@emmadoty.bsky.social

32 followers 43 following 20 posts

Student interested in ME/CFS, long Covid, etc.

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Emma Doty @emmadoty.bsky.social · 14h

www.spiked-online.com/2002/05/23/w...
Obviously aged like milk now that first responders have been dying for the last 24 years

World Trade Centre syndrome

We are healthier than ever - but fear is making us ill.

www.spiked-online.com

Emma Doty @emmadoty.bsky.social · 15h

Fellow Americans who may be reading this: If you’ve never heard of Simon Wessely, he wrote an article in 2002 arguing that illnesses caused by exposures on 9/11 are just psychosomatic.

Emma Doty @emmadoty.bsky.social · 15h

If you say:

EBV causes MS
HPV causes cervical cancer
RSV in infancy is linked to asthma
Some people develop Type 1 diabetes after an infection

it’s not controversial. But as soon as you say the words “long Covid,” you get buried in people telling you it’s just hysteria. Why is that?

Emma Doty @emmadoty.bsky.social · Aug 8

It’s a good day to donate to nonprofits that fund ME research because governments don’t.

OMF Home - Open Medicine Foundation

ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.

Emma Doty @emmadoty.bsky.social · Aug 8

Today, August 8, is #SevereMEDay. August 8 was chosen because it’s the birthday of Sophia Mirza, who died of ME in 2005. Today, read the story of the neglect she suffered from medical professionals who dismissed her disease. www.sophiaandme.org.uk/sophia%20&%2...

SOPHIA & M.E. HER STORY

www.sophiaandme.org.uk

Emma Doty @emmadoty.bsky.social · May 30

I’ve long believed we should have a National Covid Memorial alongside our national war memorials for this very reason.

Emma Doty @emmadoty.bsky.social · May 9

For their #MayMomentum campaign. The Open Medicine Foundation is a leader in #MECFS and #longCovid research and I am happy to dedicate this donation to them. Join the effort at www.omf.ngo/donate
Let’s make change, with change! 🪙 🪙 🪙

OMF Home - Open Medicine Foundation

ME/CFS & Long COVID are life-altering illnesses. Together, we can move research further, faster.

Emma Doty @emmadoty.bsky.social · May 9

I’m not on here often but I’d like to share about the 8th Semiannual Coinstar Day. Twice a year (5/9 and 11/9) I take all the coins I’ve accrued in the last 6 months to a Coinstar and convert them into cash to donate to charity. Today’s haul (including bills) came to $73 for @openmedf.bsky.social

Receipt showing $76.70 donation ($73 after processing) to the Open Medicine Foundation

Emma Doty @emmadoty.bsky.social · Nov 28

But can you control your microwave with your mind yet?

Emma Doty @emmadoty.bsky.social · Nov 28

Yep, that’s a thing. Stress to the body such as Covid can send growing hairs into the resting state (telogen) which then causes them to fall out.

Emma Doty @emmadoty.bsky.social · Nov 28

7 Tesla brainstem studies have been interesting. I too hope that’s a path they go further down.

Emma Doty @emmadoty.bsky.social · Nov 27

or was intentionally BSing. I certainly wasn’t able to jump at the time. Because I had a long Covid diagnosis and there are no treatments for long Covid and there’s a misconception that it always gets better with time, my doctors didn’t investigate too far beyond the LC label and instead /7

Emma Doty @emmadoty.bsky.social · Nov 27

and I use it when my breathing gets a fraction as bad as it was constantly in October 2022. Looking back, I don’t know how I even stayed out of the ER day to day when it was that bad.
I don’t know if the young man in that TikTok actually had long Covid and benefited from jumping in waves /6

Emma Doty @emmadoty.bsky.social · Nov 27

(I had had a visible lump in my neck since about 2019, which neither I nor anyone else had thought twice about.) Within days of the thyroidectomy, my asthma almost disappeared. I never use maintenance inhalers anymore and rarely use my rescue inhaler— /5

Emma Doty @emmadoty.bsky.social · Nov 27

and I was only having more trouble walking because the cold was affecting my muscles.
Over the next several months, the turning point being an ER visit when my oxygen fell to 77 during a particularly bad attack, I was put on several inhalers and eventually diagnosed with thyroid cancer /4

Emma Doty @emmadoty.bsky.social · Nov 27

I found a video of a young man jumping in waves saying cold water immersion helped his long Covid. So I made a cold bath (which I never do, as a hot bath enjoyer) and immersed myself in it for as long as I could tolerate. The next day, the breathing was no better /3

Emma Doty @emmadoty.bsky.social · Nov 27

Sometimes my breathing got so bad it was hard to walk. My doctors didn’t know what it was or what to do. I’d read most every online forum. In a moment of desperation, having exhausted all my resources, I went to TikTok and searched “long Covid” to find tips. Any tips. /2

Emma Doty @emmadoty.bsky.social · Nov 27

Of all the things that scare me about the new administration, long Covid research is among the least of them exactly for these reasons. Since PLRC got a $5M donation from an individual rich guy, I’m optimistic about that path. Because even rich people aren’t immune to long Covid.

Emma Doty @emmadoty.bsky.social · Nov 26

Here is more detailed information about pacing. It’s difficult because PEM is usually delayed by 12-48 hours so someone with the disease can feel fine during an exertion and not know how damaging it was until later. Thanks for being interested. meassociation.org.uk/wp-content/u...

meassociation.org.uk

Emma Doty @emmadoty.bsky.social · Nov 26

Pacing is limiting activity (and this can include very basic physical and mental activity) to avoid triggering post-exertional malaise, a worsening of illness caused by even basic activity. As opposed to forcing patients to exercise which makes the illness worse if it comes with PEM.

Reposted by Emma Doty

Kelly @broadwaybabyto.bsky.social · Nov 23

Anytime I advocate for better covid mitigations - people assume I want to lock them in their homes forever.

In reality we could drastically limit covid transmission with the following:

- Masks in healthcare
- Clean air in public spaces
- Free vaccines, tests & respirators
- Paid time off

Reposted by Emma Doty

AMooney @amymooney.bsky.social · Nov 25

#ME is Wikipedia’s main page feature today. en.wikipedia.org/wiki/Main_Page

Wikipedia, the free encyclopedia

en.wikipedia.org

Reposted by Emma Doty

Boo-trino Lab @putrinolab.bsky.social · Nov 20

was incomplete and maybe your perception of the patient experience needs to be updated. The IACC community is embattled and struggling. They need clinicians who are allies and understand their struggle. If you can’t be that, sit down and 🤐
Hope this helps to clarify. 🙏🏻 /end

Reposted by Emma Doty

Boo-trino Lab @putrinolab.bsky.social · Nov 20

provider, getting angry at the patient, ignoring the patient, etc. Or you could choose to do the work: partnering with the person in your care, reading more, listening and actively problem solving, referring to a clinician who is more experienced. All of the former are easy, 9/