Morgan Stephens
@morganstephensa
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around the White House @business , poet TILT (Aldrich Press 2024), previously @cnn , #LongCovid
Washington, DC
Joined June 2009
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Breaking my Twitter hiatus to share some important research.
Latest in
@Nature
find replicating (meaning active) Covid-19 in brain and body tissue in 44 autopsy patients up to seven months out from acute infection. See thread for details and link.
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It's politically inconvenient to acknowledge the massive amount of Long Covid patients in need of treatment and financial assistance in the US because once you acknowledge its magnitude, public policies, institutions and workplaces have to do something about it.
A thread.
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Is it just me or has the entire country dissociated completely?
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At-home rapid Covid-19 tests in Germany are €1. I took one nearly every morning while I was there for two weeks. In the US, it was celebrated when at-home rapids made it to convenience stores for $24 each.
Want to mitigate spread? Make them cheap and accessible to all.
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I have some news.
My 3D Voxel-Based Morphometry MRI confirmed I am among those with grey matter loss from Covid-19. In short, this means I have brain damage from Covid-19. This is starting to be seen in Long Covid patients, and I am one of them. 1/3
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Just a reminder that
@CDCgov
stated 1 in 5 Americans who have had Covid-19 now have
#LongCovid
. Now that we’re heading into winter, a PSA.
It’s pure hell. It will change your life as you know it. 🧵
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Re: article suggesting Long Covid is exaggerated (not going to link it), let me ask, would someone at the beginning of a career they worked half a decade for, paid for her education, employed at her dream news org, just stop working, unless absolutely debilitated by it? No.
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There is economic interest in every facet of not recognizing the vastness and severity of Long Covid. Blood clots, strokes, myocarditis. All results from this virus. How do we know? There plenty of research at this point. Yet, crickets.
🧵 1/6
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NEW: After sharing he has
#LongCovid
, VA Senator
@timkaine
introduces the "Care for Long COVID Act" senate bill. It would fund research, investigate the US health care response, educate & disseminate information to the public, and support legal & social services for long-haulers.
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COVID is surging again. I’m here to speak from my own experience: mild infections can lead to Long Covid, REST. Rest longer than you want to. Rest when it gets boring (it will). Rest when you think you’re recovered. After you’re stable for some time, ease back into life. 🧵🧵
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I want to ask the
@WhiteHouse
their plan to deal with disability from millions of Long Covid patients. Most can barely function enough to make their own meals, much less wade through the Kafkaesque SSA system. I’ve worked there before. Can someone get me in that briefing room?
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NEW: Decrease in the brain’s cortical gray matter found in all 24 Long Covid participants via 3-dimensional voxel-based morphometry (3D VBM) MRI vs controls.
“We need funding so we can expand this research,” lead researcher and GW neurologist Dr. Ted Rothstein told me. 1/5
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The takeaway? It’s another piece of research showing viral persistence of Covid-19. This time in the brain, which, until now, hasn’t been found *active* in tissue, but thought to be mediated from vascular/endothelial damage.
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NEW:
@CDCgov
reaffirms that Long COVID is contributing to a “labor shortage and is hurting the U.S. economy.” 🧵
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The goal for patients? This is information that can hopefully lead to targeted treatment for
#LongCovid
patients, either through antivirals or something else not yet known.
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The feeling as a freelance journalist and long-hauler when I see “nobody is reporting” tweets re: Long Covid when I’ve been pitching pieces on LC for weeks to dozens of publications and either get no response or it gets passed on, is one of pure void-screaming frustration.
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Why am I always ahead of Long Covid research than my own doctors? I am tired of knowing more. I am tired of being the one to educate them, and then demanded I pay them as if they’ve offered me something.
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My latest via
@CNNOpinion
. This is the most personal thing I’ve ever written. A few reasons why I decided to go public about my horrific experience with
#longCovid
. A thread.
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Linked below is a piece on it via
@medpagetoday
for layman’s terms and easier reading. These two grafs stuck out to me.
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To journalists and media orgs covering Long Covid: The patients are the experts.
Our first reflex in coverage is to go to experts with the titles: doctors, specialists, professors. It’s what we’re trained to do. It’s safe and reliable. And indeed, there is value there.
1/4
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This is an honest tweet and I might regret it. But I feel completely deserted by those in journalism. After a painstaking battle with Long Covid, I’m well and have been looking for work. It’s been months of shut doors, emails unanswered, ghosted by people I considered mentors.
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Most Covid-19 replication happened in respiratory, cardiovascular, endocrine, ocular, and brain’s central nervous system, respectively. See table:
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There is no treatment for Long Covid. Again, there is not a single treatment for Long Covid. If you develop it, you’re on your own.
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But until we acknowledge that a vast amount of the American public is ill, needs treatment and monetary assistance so they don't lose their homes or apartments, can do the bare minimum to take care of themselves and their families, the US is far, so very far from thriving.
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I don’t visit doctors as much as the first year. I know their limitations. I have an illness they don’t understand or are hostile toward its validity. And the cost of healthcare makes it to where, personally, I don’t enjoy setting large sums of money on fire.
1/5
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The financial aspect of
#LongCovid
needs to be address by Congress, the White House, & state legislators, now. As of today, if you get sick, there’s no safety net. At your illest, you lose your income, by either reduced work hours or laid off, and thus, your health insurance.
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The ability of LC to hide from conventional tests makes it easy to ignore. But with infections continuing, it's a problem that continues to grow. It could affect you or someone you love. I'll put it plainly. from someone who spent that last 1.5 years healing. You don't want it.
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Most Long Covid patients deal with illness so severe they should be admitted to a hospital, yet stay home bc:
1. There’s still no treatment to help them
2. They can’t afford more medical debt esp when there’s no financial help
3. They’ll be deprioritized in a hospital setting.
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Thank you all for your continued support. I will spend the next months working on my neuroplasticity, writing, reporting and resting. Much love.
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Link to study for those who want to dig deeper:
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Long Covid is a unique illness in the fact that what it develops from--Covid-19--was one of the most politicized viruses America, and the world, has experienced. And the tragedy is because of that, Long Covid, and the disability caused from it, has become politicized.
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Here is expression of COVID’s presence and replication in the central nervous system, aka the brain and spine.
These images are tissue from the hypothalamus, cervical spinal cord, and spinal ganglia.
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We talk about labor shortages. Well, studies show 10-30% will develop LC after acute Covid & can't work. If the economic element doesn't matter, perhaps the human element will. If you become chronically ill, would you want policies & public health messaging addressing it?
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Now that ‘pacing’ is getting its day in the sun. Let’s discuss making it financially feasible to rest/pace without losing the ability pay bills, feed yourself and family, and keep your home and job—where, here in America, a job often means health insurance. 1/2
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I’m part of the WH press pool today and can confirm we did not need to test this morning. First time since the beginning of the pandemic.
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Journalists and editors: If your Long Covid story doesn’t have at least one patient as a source (preferably multiple) it is not fully reported out. Period.
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More news: I am publishing my first poetry collection titled "Tilt" on chronic illness, trauma, gender and the pandemic--and decided to share one of the poems via my Substack. I am thrilled to share all of it with the world when the time is right.
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NEW: Long Covid patients face a “broken,” bureautic system when applying for disability (SSDI) though the Social Security administration. A thread on what I found in some of my reporting.🧵
My latest reporting for
@CNNBusiness
.
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There are those that outright deny it because, well, Covid-19 is a hoax made to control us. And there are those that want to move on because, well, the economy and inflation and of course, we have midterms coming up. We can't *still* be in a pandemic. We have to be thriving.
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I want to discuss my experience with Central Nervous System (CNS) dysfunction from Covid.🧵
I remember early in December 2020 after the onset of my neuro symptoms, I kept saying in my slow, drunk-like slur, “Something’s wrong. It feels like this is my central nervous system.”
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What many don’t understand is there’s a spectrum of disability and severity in long haulers. As my friend
@D_Bone
says, he unfortunately got the “Long Covid Platinum Package.” Some, if they’re very lucky, get out in a three to six months. Others are sick for years.
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ATM I’m unable to do what I love because I’m unable to function. Will I improve? Likely. Yet we don’t know the timeline or if my baseline will shift. Long-haulers live in this uncertainty. It takes strength and courage to do it. To suggest otherwise is an absolute insult.
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The 1989 ad that
@realDonaldTrump
ran in four NY dailies after the Central Park Five allegations.
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It’s triggering to see media takes that say that two years into the pandemic scientists and physicians are *now* turning their focus to Long Covid. People have been suffering for two years without any acknowledgment or treatment and were gaslit the entire way. Lest we forget.
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It’s incredibly sad and ironic. Millions of Covid’s living casualties who desperately need treatment and financial assistance—and God forbid some recognition—are deserted by the same entities whose careless decisions brought them here in the first place.
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It’s also simply uncomfortable for many to look inward and reflect on how they approached the pandemic, how they may have contributed to others getting sick, perhaps dying, or now disabled.
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That’s what you’re in for, should you unfortunately join this club. Just thought the world should know what post-Covid life is really like—what long haulers live with every day.
That’ll be all.
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Not sure how many Long COVID people are still on here, but I wanted to share something in hopes to help. I had a procedure called a Stellate Ganglion Block. Formally used in combat vets for PTSD, and now Long COVID patients, it de-stimulates the autonomic nervous system. 🧵
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Today is
#LongCovidAwarenessDay
.
Thinking of all those whose lives were turned upside down abruptly and unexpectedly, left to navigate a terrible illness alone. Thinking about my people who kept me lit in the dark. I’ve reported on it the best I can while sick. 🧵
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Most long haulers lose the ability to work and/or function at some point, and need to rely on others. Best case, you improve and are able to return to work, but live with fatigue and it’s a rollercoaster—LC is notorious for being fickle and unpredictable in its good/bad days.
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Having considered myself pretty much recovered, only to be reinfected and thrown back into this hellish experience is something I wasn’t prepared for. It’s isolating. It’s terrifying. It messes with your confidence. Those with Long Covid who’ve dealt with this—how?
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Every single high-risk person should be prescribed Paxlovid to have on hand, for when they test positive for Covid.
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I've been on an antiviral for a week. I'm seeing a noticeable difference in fatigue and mental clarity.
FWIW, it's not Paxlovid. This, to me, points to prolonged virus(es) in Long Covid (could be multiple: Covid, EBV, etc.), leading to a cascade of immune dysregulation.
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Do you want endless doctor’s appts? Do you want to hemorrhage money? Do you want to list off your symptoms over and over as your inflamed brain glitches and the world spins, only to have the specialist you waited months for blink at you before he recommends Peloton?
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"In the ER, on the day Ferrer died,
@NickGuthe
said the doctor asked, 'How long has your wife been depressed?' And I said, 'She wasn't depressed. She was in excruciating pain from long Covid.' And he said, 'What's long Covid?. . ."
Guthe told the doctor to "just Google it."
1/3
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NEW:
@NHSuk
quietly added a new health condition ineligible to donate blood: Long Covid.
I’ve reached out for comment on what led to this change and will update with response. h/t
@1goodtern
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Grateful to
@ccomplexhealth
where I underwent plasmapheresis yesterday for neuro
#LongCovid
. It was some of the best care I’ve received in two years of this debilitating illness. Also, they introduced me to chocolate tea. So now I’m hooked.
🧵
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NEW:
@TheLancet
research of more than 1 million
#LongCovid
patients shows cognitive deficit, dementia, psychotic disorders and seizures *two years* from acute illness. This is both validating to those who’ve been going through it and scary. But there’s hope.
1/5
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To recognize this challenges what the US is built on—money and “individualism.” This was the place where instead of protecting each other, people fought over masks, where Covid was politicized, where policy decisions were based on profits, not public health.
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Then, the disability. From the political to the workforce to insurance to media, there’s little interest to acknowledge. Businesses need profits. And what’s America if not its profits margins? If recognized, accommodations and financial help would need to be doled out.
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Intuitively, Long Covid *feels like* a blood flow/vascular/inflammation issue. Saying this bc in a flare (yes, still) on bad days, the head pressure & vertigo/balance issues make me think inflammation of vessels. Better days? Less fog, less pressure, less vertigo, more energy.
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There are many with LC living in the shadows, who haven’t been open about their struggle with the illness because it’s still stigmatized. But I message with them every week. Many are frightened, with no help from our institutions, or sadly, their own colleagues and friends.
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Last, get those finances in order. This is an expensive disease. Want every invasive scan and bloodtest under the sun to rule out cancer, tumors, MS, autoimmune diseases, encephalitis, etc? Oh, 99% come up negative so you’ll keep searching and spending. The cycle continues.
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Two more diagnoses found via bloodwork & punch biopsy. I am tired. Physically, mentally, emotionally.
There’s no treatment, no recognition and no financial help. I’ve been trying to finish a disability application for a month and cannot get back into the
@SocialSecurity
site.
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Protesters for
#LongCovid
and
#ME
via
@MEActNet
are gathering in front of the White House today. Follow along to see what their demands for
@POTUS
are.
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In short, loss of gray matter equals loss of brain cells. It’s found in diseases like Alzheimer’s and Parkinson’s. Now, it’s being found in Long Covid patients. The participant’s ages ranged from 22-60. All were formally healthy and had mild acute onset.
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And if you improve, don’t expect to be the same person you were before. This virus takes and takes and takes. It leaves you clinging onto any semblance of yourself from before. So, gather every bit of strength. You’ll need it.
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I’d be remiss to say that some do, indeed, return quickly and steadily to those pre-Covid baselines. We call those unicorns. Let’s hope and pray you’re a unicorn.
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For my LC followers: I jogged today for the first time in three years of recovery. I truly believe a better baseline is possible for each of us. Esp if you have Three 6 Mafia playing. Three 6 Mafia heals.
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Well, if Covid-19 causes Long Covid, and Long Covid is proven to deal with an immunological change in the body, then Covid-19 causes immunological damage. How is that not clear?
I live this crap, and report on it. You look into it for five minutes and think you know more?
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There are serious failings happening between doctors and LC patients right now. To
#MedTwitter
: It is your job to stay on top of research. And if you do not know something, that’s OK, admit you don’t know it and use the appt as an opportunity to start learning.
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Nobody should have to go through an illness for two years where nobody can offer treatment or advice on when it might to end. When there’s nothing left but to endure it. Yet the strength & depth of character I’ve seen from my dear LC friends has been a silver lining.
A thread.
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There’s also different recovery timelines. Will you be betterish (don’t expect to be better-better, tamper those expectations) in three months or two years? Will you improve then get pulled back and be back at square one? This is a gamble you must be willing to take.
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I want to point out there are also wonderful physicians and researchers earnestly trying to help LC patients and figure this out. I see you. Thank you.
Others? It’s been over two years and tens of millions seeking your care. If you’re not brushed up on this, ask yourself why.
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Many with autoimmune diseases have to take medication to stay functional. Most autoimmune diseases affect women. This means that those gaining weight from chronic illness is usually, but not always, women.
And we know how society conflates women’s worth with their appearance.
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Today I was told by five pharmacies in the DC area there is a nationwide shortage of my medication. (No, it’s not adderall). It has completely stopped being delivered, is on back-order and they don’t know when they’ll receive it.
American healthcare is going grrreat.
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However, we should recognize that the patients are experts, especially in the new, not well understood disease that is Long Covid. They provide value in a different and perhaps more insightful way.
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Imagine if every. single. moment of the day was spent with a rocking, spinning and/or floating sensation. Then throw some good ol’ fatigue, tinnitus and migraine pain on top and you’ve got Long Covid, folks! 🙃
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Now, when I see them, I assume they at least know about Long Covid. I assume they are up to date on the most basic research. Yet I’m still getting side-eyed. I’m still getting shrugged shoulders and asked about anxiety. I’m still told to exercise, do yoga, then referred out.
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These approaches are important to get out to the layman. I hope it brings us closer to recognizing many don’t have the option to pace because they aren’t independently wealthy. They must continue to work, thus making themselves sicker. That must change.
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An amusing and depressing part of this is when they find out I’m a journalist, they start to act different. This comes when I tell them I’m unable to work and they ask what I do. Then, they’re more curious, ask me more questions. I can only imagine what it’s like for others.
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My lovely occupational therapist told me she’ll be using my
#LongCovid
story & article at the World OTs Congress in Paris as a framework for OTs from all over the world to learn about how to treat long-haulers.
That is why I’m public about this illness. That is why it matters.
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I’d like to note that I, & many in the LC community, had reactivated Epstein Barr Virus post-Covid.
This was the only blood work that showed abnormality. After spending thousands in the trad med pipeline, it was an ME/CFS specialist who, at least partly, knew what to look for.
💡HUGE—We now have evidence that Multiple Sclerosis is likely caused by an infection—notably, the Epstein-Barr virus increased risk of developing MS by a whopping **32-fold***—via Harvard epidemiology team. ➡️ Hopeful because EBV vaccine coming soon. 🧵
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I’m in the trenches of Long Covid recovery after what’s been an up and down crash cycle since summer. But I wanted to share thoughts.
@loscharlos
pointed it out before and I think he’s spot on. Online spaces, especially Twitter, have become the place to bring awareness to LC. 1/6
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Recently,
@selenagomez
opened up about her recent weight gain due to an autoimmune disease. This comes after she was criticized (more like trolled) about it online.
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So, what is gray matter and why is its decreased volume significant? Gray matter deals with our executive function (planning, organizing), memory and emotional centers. It also allows us to control our movements.
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This tweet might get me in trouble, but you know what suffering does? It gives you freedom to say what you really think. The lack of in-depth coverage on Long Covid here is disappointing.
You may have up to a 50% higher risk of developing long Covid-19 if you suffer from common psychiatric issues such as anxiety or depression
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Their experience provides information in ways the top-down approach can’t. Lean into that. The ones affected most by the policies should be part of the conversation. Pair them up with Dr’s in panels, include them as essential sources in reporting, rely on them for story ideas.
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@MandiScttChstlr
@Reuters
Being a reporter and holding power to account is unprofessional? No, I’m sorry you’re mistaken.
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The best (and only) way to increase gray matter is via neuroplasticity. There are a few ways to do this, including meditation and exercise. However, most LH’ers have PEM. This can make physical activity challenging and counterproductive. Find what your individual threshold is.
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I’m hopeful for 2023. Research is happening and *some* treatment is likely on the way.
Long-haulers, know you’re not alone. We felt it in our bones—and brains. We’ll keep up with the science as the pieces of the puzzle come together and validate all we’ve been through.
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I’ll be taking some time offline as I focus solely on my Long Covid recovery. Wishing everyone a peaceful and restful holiday season. Take care of yourselves.
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the inability to utter the word is either a trauma or guilt response
What's your unpopular opinion about Covid that would land you in this position.
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It’s the hardest thing I’ve ever had to face. It’s affected my life in every facet, from my physical and mental health, to finances, to career, to family planning. For three long months, I didn’t think I would survive. The trauma and suffering LC brings cannot be understated.
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We are three years into this. This is a failure of our healthcare system, public health officials and the state.
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This serves as a reminder that there are ~tens of millions out of work, no social safety net, employers reluctant to accommodate them, and no database to count them in any official government capacity.
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Some news. My time at
@CNN
has ended.
My dream was to report here. And I did. I learned the ropes of national news production for
@OutFrontCNN
team alone at home during a pandemic. I wrote about my traumatic experience of Long Covid. I reported a story that headlined digital.
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I keep thinking of the Lancet study finding epilepsy/seizures in patients up to two-years post. And I keep seeing my father, shaking. He had two seizures during acute Covid in 2020 that I had to respond to. Doubt clouded med’s response when I tried to describe what I saw.
1/2
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Everytime I post about LC there’s an army of trolls commenting it’s because of “the jab.”
LOL, I got sick in 2020 numbskulls.
All of us who got Long Covid *before vaccines were even available* need to keep telling our story because there seems to be a concerted campaign to rewrite history with "it's the jab"
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