Ryan Prior @r_prior Twitter profile

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Ryan Prior

2 years

"The Long Haul" is officially *published* today. It's the story of millions with #longcovid , including me, a science writer. It's the story of how patients collectively found their voice, how they fought for change, how the world will benefit.

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Ryan Prior

@r_prior

2 years

Scene outside the White House now. The pandemic isn’t over for millions of long haulers. #mecfs #longcovid

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Ryan Prior

@r_prior

1 year

Today for @openmind_mag , I have a big new essay about #longcovid , #mecfs , and how we’ve surpassed a historic pivot point in the scientific understanding of post-infectious disease.

Gaslighting Long Haulers

Despite all the patient voices and validating studies from university labs, long Covid has been dismissed by some doctors and journalists as a contested,…

www.openmindmag.org

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Ryan Prior

@r_prior

2 years

Brookings' @kathrynsbach at today's House #longcovid hearing. 16M Americans could experience Long Covid, and 4M could require reduced work hours. If 2.3% of entire working population has it, then there's "no way this wouldn't have a significant impact on the economy"

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Ryan Prior

@r_prior

2 years

I’ve just turned in the draft for my #longcovid book — 76,000 words worth. It’s probably been the greatest (and most worthwhile) challenge of my life. More updates soon, but as for now, am looking forward to a much-needed break

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Ryan Prior

@r_prior

5 months

I’m slated to appear on the Cuomo show this Friday (8pm ET on News Nation), to talk about my book The Long Haul, and what we need to do to truly address Long Covid. As I’m prepping, I’d love to hear what’s on your my mind! What’s most important in new research/policy/moonshots?

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Ryan Prior

@r_prior

1 year

“The Long Haul” is excerpted today in Newsweek (in print and online). It begins with this first sentence: “It isn't just life or death. Even a mild case of the virus can disable many of us for the rest of our lives. And our leaders had no idea.”

Long COVID might be key to understanding why some people get—and stay—sick

In this excerpt from his new book, journalist Ryan Prior shares how studying COVID complications will likely present one of the greatest scientific opportunities of the modern era, helping us...

www.newsweek.com

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Ryan Prior

@r_prior

2 years

I'm next working on a piece about journalists get wrong when they're reporting on disability. What are some of the biggest errors or mistakes that you've seen? How do we motivate the whole profession to cast disabled people in a way that is dignified, true, and forward-looking?

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Ryan Prior

@r_prior

2 years

Journalists on the #longcovid and #disability beats: Protest scheduled outside White House on Mon 9/19 at 12pm. Dozens disabled by #mecfs and post-viral illness may be arrested as they sit down to rest. Great visuals, and a window into a major story.

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Ryan Prior

@r_prior

5 years

Today I have a CNN story out about #mecfs . If you read one story I write this year, this is it! Please read & share!

He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing...

Ron Davis, a geneticist at Stanford, is one of our era’s greatest inventors. Now, with his son ravaged by an incurable disease, Davis is leading a dream team of Nobel-winning scientists to find a...

www.cnn.com

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Ryan Prior

@r_prior

3 years

Today is my first day away from CNN to work on my book about #longcovid . I'll be on book leave for the next 12 weeks, and return to work around Thanksgiving. So excited to amplify millions of patient/researcher voices and how long term effects of pandemic are changing healthcare!

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Ryan Prior

@r_prior

3 years

The patient advocacy movement for #longcovid has been one of the most inspiring examples of science/humanity I’ve seen in my lifetime, building on decades of work from #mecfs groups and countless other movements. No single person can represent it. That’s what makes it powerful

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Ryan Prior

@r_prior

1 year

Not everyone’s up to speed on that. Recent articles in @NYMag and @newrepublic , have managed to miss that body of available science and lived experience, and engaged in a dangerous forms of “both sides.” It’s akin to elevating flat-earthers or climate denialism.

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Ryan Prior

@r_prior

2 years

⚡️🎉COVER REVEAL🎉⚡️ I'm excited to reveal the cover of THE LONG HAUL out 11/15 @PostHillPress . The book tells the story of #longcovid under the backdrop of scientific history, and with a personal memoir through line. PRE-ORDER:

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Ryan Prior

@r_prior

3 years

I have a Q&A up today for CNN with Stanford geneticist Ron Davis on how his efforts spearheading #mecfs research could yield dividends for #longCovid as well. His advice to long haulers: Don't exceed your energy envelope for any reason.

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Ryan Prior

@r_prior

4 years

My friend Cindy Shepler was like an honorary aunt or a godmother for me. She inspired me in dark moments, in part because she'd suffered greatly in life. When she chose an assisted death, she asked me to tell her story to help others in same situation:

My friend chose an assisted death in Switzerland. Her dying wish was to tell you why | CNN

Cindy Siegel Shepler had several chronic disease diagnoses and lived with severe pain and fatigue for decades. In choosing legal assisted death, she hoped to provide an example for Americans about a...

www.cnn.com

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Ryan Prior

@r_prior

1 year

Today, for The Nation, @fi_lowenstein and I have published a feature story about the "Long Covid Revolution," how post-viral illness is tearing at the fabric of American life, and forcing a reckoning for the future of disability policy.

The Long Covid Revolution

Millions of American adults are impaired by long Covid. They have a vision for what our society owes to chronically ill and disabled people.

www.thenation.com

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Ryan Prior

@r_prior

2 years

#MillionsMissing refers to millions of #mecfs patients missing from their lives, and millions (billions, really) of dollars in lost wages missing from the economy. Millions more patients could go missing due #longcovid . What's needed is an urgent, ambitious national action plan.

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Ryan Prior

@r_prior

2 years

Four years ago for #SevereME Awareness Day, I shared my story of #mecfs for CNN. Every morning I look in the mirror, grateful that I can work, write, and walk out my door. Others with ME and #longcovid are not so lucky. Today we honor their voice.

Millions suffer from an invisible disease: My ME/CFS story

Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door. Since 2007, I've lived with an incurable disease known as chronic...

amp.cnn.com

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Ryan Prior

@r_prior

1 year

NEW for @PsychToday : A march on Washington of those too sick to leave to leave bed. I report on Friday's #MillionsMissing event in DC. As officials declare end to pandemic, #longcovid & #mecfs patient groups set up 300 empty beds on National Mall.

COVID Long Haulers Protest in DC: "Pandemics Are Chronic"

Patient advocates set up hundreds of empty beds on the National Mall, rallying support for millions of COVID long haulers.

www.psychologytoday.com

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Ryan Prior

@r_prior

6 months

I’ll always remember #bethmazur this way: Visiting her and Brian in Hawaii, we drank coconuts under the stars, hiked on beautiful coasts, prayed at a Hindu temple, and snuck into a luau. She helped w/ my book, coached me on my Harvard apps, & was always ready w/ dating advice

#MEAction Network

@MEActNet

6 months

It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.

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Ryan Prior

@r_prior

2 years

BREAKING: The White House and HHS have released their new whole-of-govt national action plan on #longcovid . This comes after an April presidential memo & 120-day review period. Report details research goals and support services to help millions of patients

Biden–Harris Administration Releases Two New Reports on Long COVID to Support Patients and Further...

HHS developed two reports that together, pave an actionable path forward to address Long COVID and associated conditions.

www.hhs.gov

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Ryan Prior

@r_prior

2 years

Just got back from my appointment with #mecfs expert. Natural killer function score? I got a 7, just barely in the “normal” range by the skin ofmy teeth (7 to 125 is the range). That’s my 30th or so test in 14 years. Always low. It’s the same for most w/ #mecfs & now #longcovid

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Ryan Prior

@r_prior

1 year

Part of this is an effort to educate science writers on how to report on disability well and educating readers on how to spot good coverage. Number one rule: talk to disabled people. Interview multiple people who actually have the disease you’re writing about.

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Ryan Prior

@r_prior

2 years

I’m on the homestretch over the next few weeks wrapping up my #longcovid book. What an unbelievable journey. Still processing all of it, and know none of this will ever truly feel done until all long haulers can get back to the dreams they held before the pandemic.

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Ryan Prior

@r_prior

4 years

Many with COVID-19 are developing longer term symptoms of brain fog and severe fatigue that linger months, and possibly years, after infection. Experts learn Covid-19 “long haulers” need to prioritize rest to prevent these sysmptoms causing permanent harm

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Ryan Prior

@r_prior

3 years

Fantastic piece by @edyong209 in The Atlantic, on plight of #longcovid . It’s still opportunity to learn from #mecfs and other postviral conditions, but many researchers won’t connect dots unless they listen to patients, he argues (and I strongly agree)

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Ryan Prior

@r_prior

5 years

My new story on Doug Lindsay for CNN tells the story of grit and grace that led to college dropout outsmarting the medical establishment and inventing a surgery to save himself from a rare disease.

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Ryan Prior

@r_prior

5 months

Introducing the paperback cover for “The Long Haul!” Lighter design. New subtitle. Now lifts up the blurb from The Atlantic’s Ed Yong. It's set to be re-published by MIT Press & distributed by Penguin Random House. Beautiful thing to work w/ MIT. In bookstores 3/5/2024!

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Ryan Prior

@r_prior

2 years

Three years ago, today, we published Doug Lindsay’s story, and it went on to being the #1 most read story of the year, for the #1 digital news outlet, in the #1 year in its history, to that point.

This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself

Doug Lindsay was starting his senior year in college when he was stricken by a mysterious illness. Doctors were baffled. He eventually realized that if he wanted his life back, he'd have to do it...

amp.cnn.com

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Ryan Prior

@r_prior

5 months

Today at the Senate's hearing on Long Covid: Dr. Charisse Madlock-Brown says "there is a critical need for a MOONSHOT" to address #longcovid . Incredible energy in the room. Amazing to see full attendance from all the senators, all interested in helping. #HELPLongCOVID

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Ryan Prior

@r_prior

2 years

“First amendment activity” blocking traffic at Connecticut and I. #longcovid and #mecfs are a national emergency.

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Ryan Prior

@r_prior

1 year

First, the essay owes plenty to @ahandvanish , @LisaAMcCorkell , @EricTopol , and @julialmv , whose recent paper in Nature was a tour de force in summing up hundreds of recent studies about the biological basis of #longcovid , and its historic context in post-infectious disease.

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Ryan Prior

@r_prior

2 years

Put simply, the Great Resignation you’ve heard so much about could be partly driven by a Mass Disabling Event.

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Ryan Prior

@r_prior

3 years

I plan to dedicate my book on #longcovid to the late Cindy Shepler. She was my biggest cheerleader. Throughout her life and in her final days, she preached the interconnectedness of #mecfs and other autoimmune diseases. I miss her every day.

My friend chose an assisted death in Switzerland. Her dying wish was to tell you why | CNN

Cindy Siegel Shepler had several chronic disease diagnoses and lived with severe pain and fatigue for decades. In choosing legal assisted death, she hoped to provide an example for Americans about a...

www.cnn.com

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Ryan Prior

@r_prior

2 years

Just arrived in DC for this event. Tomorrow 12pm ET.

#MEAction Network

@MEActNet

2 years

MEDIA ALERT: People with #MECFS and #LongCovid are protesting in front of the White House TOMORROW to demand President #Biden declare Long COVID & ME/CFS a national emergency. Watch LIVE here at 12 p.m. ET. #MillionsMissing , #NationalEmergency , #press

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Ryan Prior

@r_prior

2 years

Thanks to DC’s CBS affiliate, @wusa9 for being out today to cover #millionsmissing for today’s 5pm news. We had great press engagement overall with reporters from New York Times, NPR, etc. Excited to see all the great coverage on #mecfs and #longcovid that comes from this.

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Ryan Prior

@r_prior

1 year

That dream team of patient leaders and world-renowned scientists, is a model for the future of patient-engaged research. I argue that is the epitome of Aristotle’s “phronesis,” or practical wisdom. Theory meets experience. Their full paper is here:

Long COVID: major findings, mechanisms and recommendations

Nature Reviews Microbiology - Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore...

www.nature.com

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Ryan Prior

@r_prior

2 years

I’ll be in DC outside the White House for this #longcovid #mecfs event. I’ll be sharing photos and videos as it’s happening. I’m happy to help talk to reporters about the issues at stake, and which policies can help treat, accommodate, and mitigate Long Covid.

#MEAction Network

@MEActNet

2 years

#MillionsMissing 2022 is Sept 19th at the White House* or from your home! We demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, & other infection-associated, complex- chronic diseases.

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Ryan Prior

@r_prior

5 years

I’ll have a big #mecfs story for CNN homepage on Ron Davis, @JanetDafoe , and Whitney coming tomorrow. Please help us share/get the word out!

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Ryan Prior

@r_prior

1 year

Reporters can’t fall in tired tropes and either-or thinking about Long Covid being “real” or “in the head.” The actual story is multi-faceted: in what ways is it neurological? Vascular? Autoimmune? Persistent virus? Etc.

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Ryan Prior

@r_prior

4 years

Best Christmas present is knowing this was No. 1 story from the No. 1 outlet during the No. 1 year in its history

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Ryan Prior

@r_prior

2 years

This is a direct action in the style of how ACT UP raised the alarm about HIV starting in the 1980s. New pandemic, similar playbook: putting bodies on the line to calling for more medical research, clinical trials, education campaigns, and economic support for patients.

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Ryan Prior

@r_prior

1 year

Telling the story of Long Covid requires scientific rigor, historic context, and human empathy. In sum the debate about whether this is a “contested illness” ended in 2015, after the National Academy of Medicine reviewed 9,000 papers on the topic. It’s clearly biological.

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Ryan Prior

@r_prior

2 years

Endlessly grateful to @edyong209 for first introducing the world to long haulers with grace, rigor, & passion— and now for backing THE LONG HAUL. He calls it “the story of #longcovid as it should be told.” Available everywhere Nov 15:

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Ryan Prior

@r_prior

2 years

This finding on low cortisol in #longcovid is key. For many years low cortisol was a constant part of my lab workup for #mecfs . It's challenging to treat and needs to be done on a personalized basis. But the finding by @PutrinoLab and @VirusesImmunity is a meaningful step forward

Putrino Lab

@PutrinoLab

2 years

It has been a few days since the release of our latest #LongCovid paper: an incredible amount of work from @VirusesImmunity and her team, as well as so many other brilliant and hardworking colleagues. As you might imagine it has generated quite a bit of 1/

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Ryan Prior

@r_prior

2 years

Today for @statnews , I have a new essay with @kiknack on Biden’s #longcovid national action plan. The report is helpful, but much more is needed. It’s time for an “Operation Warp Speed” to prevent, treat, and cure Long Covid.

Biden's long Covid plan is a good start. But it needs to go further

As the pandemic rages on, SARS-CoV-2 is etching itself further into the lives of millions of long haulers. It's time for a concerted effort to prevent, treat, and maybe even cure long Covid.

www.statnews.com

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Ryan Prior

@r_prior

1 year

Success does not come by reviving debunked concepts and invalidating patients as head cases, nor by creating yet another contested disease, but by getting to the bottom of what ails them so they can return to health.

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Ryan Prior

@r_prior

2 years

As usual, @ahandvanish providing a tour-de-force in research and information, emphasizing that lawmakers are wisest to direct agencies to include post-viral researchers knowledgeable about #mecfs if we want to truly crack #longcovid

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Ryan Prior

@r_prior

2 years

@AyannaPressley called into the hearing with important Q's on #longcovid centers of excellence, as a patient-centric, equitable model to follow. Her TREAT Long Covid Act, if passed, would provide valuable care to many current and future long haulers in desperate need

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Ryan Prior

@r_prior

2 years

After a year of interviews over Zoom, it’s great to meet @GinaAssaf , @ahandvanish , and @LisaAMcCorkell . It’s like meeting characters out of a novel!

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Ryan Prior

@r_prior

2 years

Civil disobedience action unfolding outside the White House for #longcovid #mecfs national emergency

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Ryan Prior

@r_prior

5 months

NIH's observational RECOVER trial on #longcovid has been like spending $1B to "forming committees and praying about it." Key line from Kansas Senator @RogerMarshallMD , a doctor whose closest love one has been incapacitated by Long Covid for two years. #HELPLongCovid

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Ryan Prior

@r_prior

3 years

Outstanding piece by @AlanLevinovitz for @VICENews arguing what the #mecfs community has been saying for decades. Post-viral syndromes are utterly predictable, and #longcovid exposes a terrible blind spot in modern medicine

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Ryan Prior

@r_prior

3 years

Insightful new piece by @edyong209 , on how #longcovid calls us to question the nature of what medical expertise is. Patients far outclass medical establishment in characterizing its life-changing effects, relying on decades of wisdom from #mecfs community

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Ryan Prior

@r_prior

2 years

Some important Q's today from @CongressmanRaja , who has a child w/ #longcovid , and lives the issue personally. He calls on his fellow members to work with him to address disparities in research and treatment for #LongCovidKids

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Ryan Prior

@r_prior

2 years

About half of those with #longcovid could have #mecfs , Highlighting this fact -- along with the right types of research -- is key to helping us navigate the labor shortage, and empowering millions with post-viral illness to keep pursuing their dreams of career and family.

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Ryan Prior

@r_prior

2 years

@Emily_Baum @nytimes Congrats @Emily_Baum I'm happy to help send ideas on patient-centered and patient-led innovation, #longcovid , the future of disability, and how we can cure post-infectious diseases. Looking forward to seeing all the big things you accomplish in the role!!

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Ryan Prior

@r_prior

4 years

My story today for about how we need to start thinking of Covid-19 as a chronic disease: “Months after Covid-19 infection, patients report breathing difficulty and fatigue” - CNN

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Ryan Prior

@r_prior

1 year

Some big news this week about The Long Haul. The book has been selected for the Silver Nautilus Book Award! I can now add “award-winning” author to my bio. Excited to be in this list of authors, which includes my childhood hero survival expert @BearGrylls !!

Jennifer Weis

@JenniferWeisTWA

1 year

Congratulations to Ryan Prior ( @r_prior ) on your Silver Nautilus Book Award for THE LONG HAUL: Solving the Puzzle of the Pandemic's Long Haulers And How They Are Changing Healthcare Forever.

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Ryan Prior

@r_prior

2 years

NK cells activity, which shows how well the body responds to viruses or cancer, is perhaps the most useful #mecfs marker so far, and it’s a test that ought to be available for all #longcovid patients. It illustrates this is real, and that the immune system is in fact compromised

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Ryan Prior

@r_prior

3 years

I set out to write this book on #LongCovid , aiming for about 75,000 words. Today I hit 37,000, meaning tomorrow is basically the halfway point. It’s been such an incredible journey so far and so thankful for everyone’s love and support as we move into the second half!

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Ryan Prior

@r_prior

3 years

Unless we all have the courage to acknowledge the reality of how radically #longcovid can alter a life — and how much science already exists to explain why — we risk allowing another generation of those with long term post-viral illness to be neglected.

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Ryan Prior

@r_prior

1 year

Next, this essay is made possible by the wise edits of @pam3001 , a veteran science writer who literally wrote the book on Lyme disease, telling the story of patients and scientists living and pioneering the story during a previous epidemic.

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Ryan Prior

@r_prior

5 months

One key moment comes with Sen. Hickenlooper saying how "spectacular" it is to have senators who are are doctors and can dive deeply into the science. Both Cassidy and Marshall are Republicans, and had some of the most insightful and passionate comments.

charlos

@loscharlos

5 months

Biggest takeaway from me on #HELPLongCovid hearing is it's clear so many Republican reps personally invested in this issue — and the committee members have surprising understanding of the pathology. They all agree we need treatment, there has to be a bi-partisan pathway.

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Ryan Prior

@r_prior

2 years

Another key finding in my own recent #mecfs lab work: cortisol, the stress hormone, came back normal, a rarity for me in all the tests we’ve run since 2007. Low cortisol is one of many culprits in fatigue/PEM, and is a key finding in #longcovid by @PutrinoLab , et al.

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Ryan Prior

@r_prior

2 years

HUGE thanks to SENATOR TIM KAINE for backing The Long Haul. His quote calling it "A book we need right now" will appear on the cover. For 2 years, @timkaine has been vocal about being a long hauler, asked tough #longcovid questions in hearings, and channeled the patient voice

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Ryan Prior

@r_prior

3 years

I think today marks day 26 of Covid fatigue/brain fog. Still around 50%. Doing my best to find ways around it. Aggressive rest, family support very helpful. Massages. Meditation. Deleting news/social media apps. Very short walks. It’s a virus of amazing power #LongCovid

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Ryan Prior

@r_prior

4 years

Whole families with #LongCovidKids are grappling with severe symptoms more than 180 days out from original infections. I spoke to families in four states with kids age 2 to 15 about ER visits, inability to exercise, constant brain fog due to #longcovid

Kids struggle with Covid-19 and its months of aftermath | CNN

Children and teenagers make up about 10% of the total number of US coronavirus infections. Some have been rocked by long-haul symptoms lasting more than six months with no clear timeline for improv...

www.cnn.com

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Ryan Prior

@r_prior

1 year

Similarly, innovators from outside the establishment, patients themselves, have spearheaded the most disruptive science during Covid. That fits with philosopher Thomas Kuhn’s “The Structure of Scientific Revolutions.”

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Ryan Prior

@r_prior

1 year

As @SusannahFox , former CTO at HHS, wrote in 2021, “We are watching patients, caregivers, clinicians, researchers, and policymakers move through the stages of peer-to-peer health innovation at a fast clip. Faster than I’ve ever seen in my 20 years of tracking this phenomenon.”

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Ryan Prior

@r_prior

1 year

The motion in this narrative is in how it’s really about a paradigm being upset by outsiders. That’s not surprising: the father of genetics was an Austrian monk, Gregor Mendel, raising pea plants. Evolution of course is from Charles Darwin, an amateur naturalist.

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Ryan Prior

@r_prior

1 year

NEW for @PsychToday , I dig deeper into my own personal story & the lens patient stories give for designing better future of medicine. I was leveled by post-viral illness in high school. Then Long Covid hit me. I relived the nightmare I thought I escaped.

Covid Long Haulers Show Us How to Transform Healthcare

Ordinary people are leveraging science and democracy to build a better future.

www.psychologytoday.com

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Ryan Prior

@r_prior

4 years

Tens of thousands have joined support groups for #longcovid , experiencing symptoms of extreme fatigue and brain fog many months after coronavirus infection. They urge peers to protect themselves, as #COVID may be able to permanently hobble the young.

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Ryan Prior

@r_prior

3 years

I’m on day 8 of Covid. Thankfully my primary symptoms are a stuffy nose and fatigue, sleeping 11-12 hours a day. I’m curious how it’s been for others with #mecfs ? Has Covid been better or worse? With lower immune function, are fewer symptoms normal? Are you afraid of #LongCovid ?

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Ryan Prior

@r_prior

2 years

Great to see @SusannahFox out at the White House today supporting the #mecfs #longcovid community. She’s researched patient communities her whole career, led HHS’s innovation lab, and has book patient innovation out next year! She says Long Covid activism is fastest she’s seen 🤙

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Ryan Prior

@r_prior

2 years

Excellent commentary by @mehdirhasan about how the Biden administration must act on its recent #longcovid report and accelerate policies to help long haulers. Mehdi has frequently been a passionate advocate for millions with Long Covid.

Mehdi Hasan

@mehdirhasan

2 years

"There is a growing sense, fuelled by both the administration & the media, that we have vaccines, we have Paxlovid, so the crisis is over. But Long Covid doesn't fit that convenient narrative." My commentary tonight on #longcovid & the millions suffering:

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Ryan Prior

@r_prior

3 years

Important NYT piece by @ahandvanish and @fi_lowenstein today, about how long Covid could be the largest mass disabling event of modern times, and we’ve actually seen symptoms like this before in more than a million Americans who already have #mecfs

Opinion | Long Covid Is Not Rare. It’s a Health Crisis. (Published 2021)

Lingering symptoms from the coronavirus may turn out to be one of the largest mass disabling events in modern history.

www.nytimes.com

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Ryan Prior

@r_prior

2 years

I've been on the board of @MEActNet since 2015, and am proud to see the org out front leading, staying true to its roots, calling for innovative policies, and pointing the way for a brighter future. This is what I signed up for on day one.

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Ryan Prior

@r_prior

1 year

The trick, as with any worthy scientific endeavor, is finding a way to see into the dark, pioneering new diagnostic tools and creating new ways to leverage collaboration between patients and scientists.

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Ryan Prior

@r_prior

2 years

In my newsletter this week, I shared a personal essay about meaning, faith, and purpose after visiting Ron Davis, @JanetDafoe , and @DafoeWhitney in 2017. Parts of that essay were published in a CNN feature in 2019, but backstory is even more interesting:

The Center of Redemption — Ryan Prior, Journalist

My CNN story about a genome pioneer trying to cure his son was viewed more than half a million times. But I think some of the most beautiful and poignant parts didn’t make it into the final piece....

www.ryantprior.com

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Ryan Prior

@r_prior

2 years

This week I'm reaching out to authors, scientists, and leaders whom I admire seeking out endorsement blurbs for my book on #longcovid , entitled "The Long Haul," set for release in bookstores on November 15.

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Ryan Prior

@r_prior

3 months

Thrilled to be accepted to the Harvard Kennedy School, as an MPA student. Better yet, it’s a full-ride as a William Starr Journalism Innovations Fellow. My North Star has always been telling stories that illuminate pathways to justice. This community will escalate the dream.

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Ryan Prior

@r_prior

2 years

@fi_lowenstein and I have been getting some really nice feedback on this story. Want to highlight that it was made possible by @kathrynsbach ’s innovative, multi-disciplinary number crunching: combining job data with illness data.

Long Covid is keeping millions out of work – and worsening labor shortage in the US | Fiona...

Recent analyses estimate that long Covid could be driving up to one-third of the US labor shortage

www.theguardian.com

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Ryan Prior

@r_prior

1 year

In a new Q&A with Newsweek magazine, I explain how #longcovid is a causing a $3.7 trillion impact on the US economy, how it can feel as though your body is just a mass of dead flesh, & how the patients themselves are the ones directing the best research.

Long haul COVID: like 'demon had hijacked my nervous system' says author

"COVID is a mass disabling event. It is catalyzing the next generation of the disability movement."

www.newsweek.com

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Ryan Prior

@r_prior

3 years

Crossing a #longcovid book checkpoint today with 50,000 words, around 2/3 of the way to 75,000. Still a long way to go in research, reporting, writing, editing, publishing. Curious if people have thoughts, hopes, fears, insights as NIH rolls out its $1.15B research initiative?

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Ryan Prior

@r_prior

2 years

I get about 16 tubes of blood drawn every six months, and frequently light up the pages with noticeable abnormalities. With the right testing, rigorous and across the board, everybody with invisible illness often has their own unique mix of abnormalities too.

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Ryan Prior

@r_prior

2 years

Great #longcovid piece here by @zeynep and just want to elevate her call to create an NIH institute for post-viral conditions. I think that’s a highly legitimate idea and something policymakers should thoughtfully consider. The NIH’s current approach on #mecfs isn’t robust

zeynep tufekci

@zeynep

2 years

Long Covid sufferers have waited too long for help, and things need to change, *now*. Research isn't fast or broad enough. Some clinicians still lack awareness, and patients face uphill battles. Vague definitions impede progress. New NYT piece. #LongCovid

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Ryan Prior

@r_prior

3 years

@edyong209 ’s reporting on #longcovid has been the kind of writing that makes me proud to share the same field, celebrating the beauty and power of the patient voice. There is wisdom in suffering and long haulers collectively embody it

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Ryan Prior

@r_prior

2 years

They were informed, by those who'd come before, who fought for those with diseases like HIV, Lyme, or #mecfs . They were inspired by civil rights, women's rights, and gay rights. I'm one of them. We're all part of their mission to change the future of healthcare.

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Ryan Prior

@r_prior

3 years

While I’d have hoped to hail #longcovid appearing on the cover of The New Yorker, I worry there could be long term harm in the piece they’ve run, making Covid long haulers seem out of touch with science.

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Ryan Prior

@r_prior

3 years

Excited to announce I'll be working on a book telling the story of #longCovid and how millions have been experiencing longer term complications from Covid-19. Expect "The Long Haul" in summer 2022. Huge thanks to my agent @JenniferWeisRYA for making this a reality!

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Ryan Prior

@r_prior

2 years

In a new essay in The Guardian, @fi_lowenstein and I argue that a significant portion of the labor shortage is being driven by #longcovid . Therefore policies to treat, accommodate, and mitigate Long Covid are necessary if we want full labor participation

Long Covid is keeping millions out of work – and worsening labor shortage in the US | Fiona...

Recent analyses estimate that long Covid could be driving up to one-third of the US labor shortage

www.theguardian.com

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Ryan Prior

@r_prior

1 year

Inspiring piece on Ehlers Danlos Syndrome #hEDS , casting patients as heroes of their own story, and showcasing how they have the insight to move science forward. I learned a lot. And the last line of the piece is so perfect.

Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes

A group of young patient-researchers is showing that patient-led research can be indispensable in the effort to crack complex, long-misunderstood illnesses, like hypermobile Ehlers-Danlos syndrome.

www.statnews.com

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Ryan Prior

@r_prior

2 years

Patients are the experts in their own diseases, abundant with wisdom, ripe with creativity. Scientists and clinicians can learn to harvest their ideas, to learn how knee-bending desperation is a catalyst for world-changing innovation.

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Ryan Prior

@r_prior

1 year

16 million Americans are believed to have #longcovid . "Every one of those numbers has a name, and every name is at the core of a story of profound loss,” said @exceedhergrasp1 during a press conference at the foot of the Washington Monument.

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Ryan Prior

@r_prior

2 years

@RebeccaLSwanson The disabled writers database here created by @VilissaThompson and @SFdirewolf is one of the best resources of disabled writers to commission for pieces. Are there other good ones worth citing for editors looking to assign pieces to disabled writers?

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Ryan Prior

@r_prior

5 months

Quick note: tonight's Cuomo segment is being pushed back (very common in daily news, of course). We'll do it again soon - thanks to the Cuomo team for their dogged persistence on this issue. HUGE thanks to #longcovid community for incredibly thoughtful feedback and prep help!

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Ryan Prior

@r_prior

2 years

Tens of millions around the world have #longcovid , maybe 100+ million. The disease is disabling, and could affect us all for decades to come. It's time for an aggressive approach to policy, drug repurposing, and services. We need an "Operation Warp Speed" to cure Long Covid.

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Ryan Prior

@r_prior

2 years

Disabled workforce participation goes up when remote work options go up. For those who are disabled, chronically ill, or immune compromised, this type of stand could be helpful in addressing the labor shortage.

Evan Easterling

@Evan_Easterling

2 years

The @nytimes wants us back in the office. We want management to bargain with us in good faith. I’m working from home this week along with 1,300 @NYTimesGuild and @NYTGuildTech colleagues, supported by @WirecutterUnion . We'll continue to produce the same high quality journalism.

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