Mastodawn

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

Brian Vastag Sep 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/

Brian Vastag Sep 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/

Brian Vastag Sep 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/

Brian Vastag Sep 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/

Brian Vastag Sep 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

Brian Vastag Sep 17, 2023

Currently the most read article at The Washington Post. 😀

Brian Vastag Sep 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

Brian Vastag Sep 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

Brian Vastag Sep 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.

haley Sep 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.

Brian Vastag Sep 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.

haley Sep 20, 2023

@brianvastag Thanks for letting me know, and for the excellent article!

Daniel E. Weeks Sep 23, 2023

@brianvastag Appreciated your informative article.

What is the name of the already FDA-approved drug?

Brian Vastag Sep 23, 2023

@StatGenDan Relyvrio

Suecris Sep 19, 2023

@brianvastag What will you do?

Brian Vastag Sep 19, 2023

@NoTwit About The Independent article? Nothing.

Michael Friess Sep 19, 2023

@brianvastag Is this a common thing? For some type of newspapers?

Brian Vastag Sep 19, 2023

@mfriess Yep, it was once called 'aggregating,' now it's just called crass rewriting.

UC Access Now Sep 17, 2023

@brianvastag Abled folks, including doctors, need to get over the idea that they can always diagnose disabled folks based on their appearance alone or that it's incumbent on the disabled person to "perform disability" to abled people's satisfaction.

Lia Pas Sep 17, 2023

@brianvastag The number of times I’ve been in the ER or hospital and have been called “otherwise healthy” is so frustrating. It doesn’t help that I look a lot younger than I am for some reason too

@brianvastag This is what they did to me in HS, “she looks fine” even as I’d miss so many days school. The attendance lady was my literal next door neighbor and was one of the worst in my early days of this illness.

It sure doesn’t help when our president walks around an auto show while trying to downplay the continuing pandemic and says “*look* around, everyone seems fine” its just more of the same stereotyping, basing everything on appearance.

Rho Sep 18, 2023

@brianvastag the other thing people can't see is all yhe abuse and trauma from doctors, quite sadly CFS is so much more than a condition

Evelyn Sep 21, 2023

@brianvastag @Manuetto I gave up wearing makeup to work when I developed CFS, because “looking my best” was counterproductive to my ongoing need for getting bosses/coworkers believe that I had legitimate reasons for being/having been out.

C.H. Romatowski Sep 17, 2023

@brianvastag ahhh!!! That’s so great. Congrats and thanks!!

Brian Vastag Sep 17, 2023

@Romatowski Thanks. I write about one article per year so it's gratifying to see it being well read.

C.H. Romatowski Sep 17, 2023

@brianvastag Sure making that one count! Hope the work didn’t take too much of a toll.

Dr Ro Smith Sep 17, 2023

@brianvastag @Romatowski This is great work - bringing this stuff to media attention is so important if we want to take turn these fins into actual treatments. I pent my entire 30s sick. I need to not spend my 40s that way.

Brian Vastag Sep 17, 2023

@Rhube @Romatowski Thanks so much. Fingers crossed Hwang can get a clinical trial going.

GimpyGurl Sep 17, 2023

@brianvastag dude, you are a real hero, thanks for all the work

C.H. Romatowski Sep 18, 2023

@brianvastag Want to add, this is really having an impact over on Twitter. It’s really clear a lot of patients didn’t understand the significance of the finding until you explained it, and this morning people have started writing to NIH to ask for support for Dr. Hwang’s research. Thank you 🙏🏻

Robin Sep 17, 2023

@brianvastag really fascinating and hopeful article.

ahimsa Sep 17, 2023

@brianvastag Wow, most read article - that's great!

Looking forward to reading this later today! 😁

@brianvastag Thanks for the article. Here is a related one, also involving the endoplasmic reticulum. I'm betting that rabbit hole will lead to microbiotic strains that may correct the misfolding of proteins, since it involves metabolic signaling.
https://www.science.org/content/article/protein-disrupts-cells-energy-centers-may-be-culprit-chronic-fatigue-syndrome

Brian Vastag Sep 17, 2023

@ArrowbearMoore Yep that's a report on the same research.

Brandon Haber Sep 17, 2023

@brianvastag Fantastic article and well done. I wonder how many more things like this are ready to be discovered, just lacking the tenacity.

Brian Vastag Sep 17, 2023

@malderi Thank you. The answer is probably "many." (Also, see: lack of funding, the inefficient way we train young scientists, etc etc.)

Deirdre Saoirse Moen Sep 17, 2023

@brianvastag This is such a great piece!

And yes, it's really hard in the middle of a disease to have the burden of figuring out WTAF is going on. Been there myself (mine is a far more common one: POTS, which I've described as being altitude sick at sea level).

Flávia Feijó Sep 17, 2023

kb Sep 18, 2023

@brianvastag Oh wow, that's interesting!

Jim Luther Sep 18, 2023

@brianvastag thanks for sharing.

@brianvastag I have a daughter suffering severe ME/CFS.

It’s good to see a furthering of understanding; and I know how necessary it is to vent frustration. People with ME continue to report experiencing medical gaslighting and psychologising.

I’ve read so much more before about the causes and comorbidities, the role of the lower brain stem, hampered mitochondria.

What I wouldn’t give to see these mirages prospects for treatments and cure flesh out! But so far: nothing.

Zhi Zhu 🕸️Sep 18, 2023

“There’s this difference between cancer and chronic fatigue syndrome,” a diagnosis her rheumatologist has finally added to her file, she says. “Everybody believes you when you have cancer. You joke about having a ‘cancer card’ to get off from doing things. No one is handing out CFS cards. I can finally say, ‘It’s not psychological. I’m not a malingerer.’ We now have a scientific explanation.”
from @brianvastag
https://wapo.st/3Pem0G4

#GiftArticle
#Health #MECFS #InvisibleIllness #USA #News

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

Zhi Zhu 🕸️Sep 18, 2023

Those of us with invisible illness often feel like hypochondriacs because our illness is not obvious just by looking at us. Even though WE know we're really sick. The fact that other people can't "see" our illness, can make us feel like we're malingering or faking it.

It's always nice when medical proof of an invisible illness can be found. It's a tiny ray of hope in a life that often feels hopeless.

Many thanks to @brianvastag for writing & sharing this article. And to A. Twinam & her drs.

(((JaneinNJ)))Sep 18, 2023

@brianvastag Great piece. Congratulations!

Bodhipaksa Sep 21, 2023

@brianvastag That was absolutely fascinating and well explained. Thank you! I do hope that the drug study proves to be successful. It would make a difference to so many lives.

Brian Vastag Sep 21, 2023

@bodhipaksa Thank you.

Bodhipaksa Sep 21, 2023

@brianvastag You’re welcome. I’m looking forward to reading more of your articles.

Brian Hawthorne Sep 21, 2023

@bodhipaksa @brianvastag I completely agree. Well done indeed.

Bodhipaksa Sep 21, 2023

@brianvastag That was absolutely fascinating and well explained. Thank you! I do hope that the drug study proves to be successful. It would make a difference to so many lives.