Brian VastagSep 17, 2023

I have an article out today that's about how one person's determination to solve her own complex health problems led to an extraordinary effort on the part of one lab at NIH & a discovery that could lead to treatments for chronic fatigue syndrome & #LongCovid.

#news #journalism #health #MEcfs #medicine #research

https://wapo.st/3Pem0G4
(gift link)

She wrote to a scientist about her fatigue. It inspired a breakthrough.

Her dogged efforts lead to a new scientific discovery that may help many others with chronically fatiguing illnesses, including long covid.

Washington Post
Show threadBrian VastagSep 17, 2023

The patient is Amanda Twinam, a lawyer from Albany. She developed breast cancer very young & was diagnosed with Li Fraumeni Syndrome, a genetic cancer disorder.

But even after successful cancer treatment, she had debilitating fatigue, neuropathy, weakness, and felt worse after exercise. 2/

Show threadBrian VastagSep 17, 2023
She went back to school for a master's of public health. She scoured journals looking for answers. Eventually, she wrote to an NIH researcher studying the cancer syndrome she had, asking if he thought her fatigue was related to her Li Fraumeni Syndrome. 3/
Show threadBrian VastagSep 17, 2023
The researcher, Paul Hwang, thought it might. So he brought her into Bethesda...and his small lab spent five years studying her tissues. It was an extraordinary effort and it led to finding a specific problem in her mitochondria. 4/
Show threadBrian VastagSep 17, 2023
This problem was then found in the majority of a cohort of patients studied at NIH with myalgic encephalomyelitis/chronic fatigue syndrome, meaning that the discovery might be a key mechanism for lack of cellular energy in the illness. 5/
Show threadBrian VastagSep 17, 2023

I was able to sneak a little #cell #biology into the newspaper, which always brings me a little joy.

Amanda tracked me down earlier this year and after she told me her story, I told her I'd try to find a way to tell it. I'm glad I was able to find a good home for it. /end

Show threadBrian VastagSep 17, 2023
Currently the most read article at The Washington Post. 😀
Show threadBrian VastagSep 17, 2023

One more note on this: Most people with ME/CFS do not *look" sick at all (although some of us certainly do). I haven't seen this on mastodon but elsewhere I've seen comments saying she can't possibly be that ill because she looks so vibrant in these photos.

If I get 9 hours of sleep, take some Adderall, and the stars align, I can look vibrant for a little while too.

But it is a communications challenge, as photos transmit so much information.

#ChronicIllness

Show threadBrian VastagSep 19, 2023

The Independent (UK) decided to rewrite my article for me. 😂

https://www.independent.co.uk/student/student-life/health/amanda-twinam-breast-cancer-long-covid-research-b2414180.html#

Amanda Twinam: A woman who survived breast cancer twice may have inadvertently furthered long Covid research

In her quest for an accurate diagnosis, she helped a top scientist learn more about symptoms caused by long Covid

The Independent
Show threadBrian VastagSep 20, 2023
Update: Just heard from Paul Hwang, the researcher who led this work. He's been getting "deluged" with emails from ME/CFS and long COVID patients, he appreciates all of the contact and support, and he is quite hopeful that he'll be able to launch an exploratory clinical trial to reduce WASF3 in patients with an already FDA-approved drug.
Show threadhaleySep 20, 2023
@brianvastag Would there be any value in adding to that deluge? I was debating contacting him, but figured this might happen and wasn't sure what would actually be helpful from the perspective of someone who might a) benefit from his research and b) would be willing to sign up for a trial if one becomes available.
Show threadBrian VastagSep 20, 2023
@haley_exe Probably not but I don't know. I asked him if there was anything specific folks could do to help support a trial and he said not really. The head of his institute is very aware of the big response.
Show threadhaley
@brianvastag Thanks for letting me know, and for the excellent article!
Sep 20, 2023 at 11:59pmWeb