Eliana Uku
@ElianaUku
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Following
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#LongCovid patient (mar '20); incoming @StanfordGSB | ex @37angelsny @paypal @inturnhq
New York, NY
Joined December 2012
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Pinned Tweet
Selfishly, I’d love to see
#PEM
prioritized as a focus area for
#LongCovid
&
#MECFS
research. I know it’s hard to isolate a single symptom in this complex web of dysfunction, but it truly is the most life-limiting part of this disease for me (and I suspect for many others).
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Today I got a glossopharyngeal nerve block as part of a broader CCI workup from my neurosurgeon. Within seconds of the injection, the constant, high-pitched tinnitus I’ve heard every second of every day since developing
#LongCovid
2 years ago…VANISHED.
@ShaneyWright
.
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After 2.5 yrs of diligently isolating & avoiding reinfection, somehow I’ve contracted BA.5. Woke up w. severe headache at 5am this morning and tested positive on rapid. I have a 101 fever, sore throat, severe head & back pain, & severe sound sensitivity. I can barely move.
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I spent my first year with
#LongCovid
&
#MECFS
completely bedbound and nonverbal. During that time, I had people close to me express more concern about the *~impact of deconditioning~* than the debilitating symptoms that were keeping me in bed. 1/
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A word of caution on “How I Recovered from
#LongCovid
” posts, which are now abundant on the internet. We know from
#pwME
that a % of folks will spontaneously recover within the 1st year. Those people are likely to attribute their recovery to whatever they were trying at the time.
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This is not to say that there aren't risks to immobility (if possible, measures should be taken to improve circulation & lymph flow), but rather to emphasize for the millionth time that DECONDITIONING IS NOT THE F-ING PROBLEM HERE.
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We now have data suggesting EBV infection may lead to MS roughly *a decade later.* I wonder if we’ll see a spike in neurodegenerative diseases, heart disease, cancers, & more in the coming years linked to prior covid infection in people presumed to be totally healthy.
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Once we nailed the right cocktail of treatments that brought inflammation down enough, it took precisely *4 weeks* for me to build up to walking 20 minutes a day, cooking my own meals, and pursuing hobbies like painting. A flip switched, and suddenly things became possible again.
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My advice to anyone with
#LongCovid
or
#pwME
: prepare for reinfection NOW. Talk to your providers about how they would treat you. Will you need extra supplements/antihistamines to control mast cells? Buy them NOW. Do you have RATs to last min 10 days? I was positive for 12.
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I JUST GOT APPROVED FOR DISABILITY BENEFITS! Only took a full year from my application date, an initial rejection, a law firm’s help for the appeal, hours & hours of paperwork, and so much unnecessary stress.
#LongCovid
#MECFS
#MEspine
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@ManvBrain
@zeynep
Me, at the finish line of the NYC marathon pre-Covid (my 5th marathon). Last week I collapsed to the floor on my way back to bed from the toilet. I shouldn’t have to use my past accomplishments to prove that my
#LongCovid
&
#MECFS
are not psychogenic, but here we are.
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Personally, I don’t find the “I recovered spontaneously in under a year, therefore you, person who has been much sicker for much longer, should have hope” posts particularly hope-inspiring. What I do find hope in: news of research, treatments, & advocacy.
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The next time you see someone claiming to have completely healed in <12 months thanks to a brain retraining program, meditation retreat, or random assortment of supplements, just think twice before pouring your limited funds into these modalities.
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Ear and throat pain (which are typically mild and very tolerable for me) also vanished. He used a short acting anesthetic (<1 hr) so the relief was fleeting. However, this suggests that my glossopharyngeal nerve (which sits RIGHT on the brainstem) is implicated.
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Just had my first at-home PT session through
@getlunacare
. My therapist (who was very pleasant, detail-oriented, & knowledgeable) said most of her clients as of the last 6-9 months are
#LongCovid
patients in their 20s & 30s w. severe exercise intolerance & neurological deficits.
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Two things about this absurd study & the news outlets trying to somehow put a positive spin on it —
1. When I first got sick, a doctor told me 80% of his post viral patients recovered in ~one year. I sobbed. A WHOLE YEAR?! That seemed unfathomable.
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Curious - are there any patients on here who had heard of
#LongCovid
prior to developing it, but either thought (1) it couldn’t happen to me or (2) if it did, it wouldn’t be that bad?
*no judgment* would just love to understand what informed your beliefs
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2. When I asked how he arrived at this 80% figure, he said his patients just gradually stopped seeing him around the one year mark, so that *must* mean they recovered. Then I sobbed even harder at the stupidity of his logic. The stat was obviously totally unreliable.
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How many people do I know of from my pre-pandemic life (classmates, coworkers, friends of friends etc) that have
#LongCovid
? 11. I personally know of 11. Each one reached out to me after I started speaking publicly about my own case on instagram (~3 months into my illness).
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Update: just received bebtelovimab IV push (the only monoclonal antibody that works against BA.5). Provider said to expect temporary worsening of symptoms over the next 24hrs as the antibodies “do their thing.”
Current heart rate supine in bed at 100-130. Normally in the 60s.
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Something I wish I knew as freshman longhauler: mast cells release ~a thousand different mediators, *one* of which is histamine. Just because you don’t respond to anti-histamines does NOT mean you don’t have a mast cell problem.
#MCAS
#LongCovid
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I’ve been really, REALLY sick for 2.5 years. Yet on my “good” days I still find myself hyper-focused on productivity, planning career moves for when I’m recovered (lol), and thinking 9 million steps ahead.
How can I squash this part of myself? Because I absolutely despise it.
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I wear an n95 everywhere (incl outside) - how could this have happened? I went to a neuro appt a couple of days ago that required me taking my mask off for a few minutes to do a trans cranial Doppler. The day prior I went into a Duane Reade for about 5 min to purchase something.
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Small study suggests covid rebound symptoms are *not* linked to impaired immune response allowing more viral replication, but rather a “robust cellular immune response to residual viral RNA.” So, essentially the opposite of what many people assumed.
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Up next: praying to the
@pfizer
gods for no rebound, or at the very least for a gentle one. 🙏🏼
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Just watched
@jenbrea
‘s incredible documentary
@unrestfilm
on Netflix and nearly sobbed the whole time as it perfectly describes what my boyfriend and I are going through -
#LongCovid
folks, please watch if you haven’t already and share
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Popular expressions that have proven to be comically false for
#LongCovid
and
#MECFS
patients:
-Time heals all wounds.
-What doesn’t kill you makes you stronger.
-Good things come to those who wait.
-The body achieves what the mind believes.
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I was in my 3M aura, but most other shoppers were maskless. These are the only two instances in which I’ve had contact with other people in the last week. Unbelievable. Now, Paxlovid or mAbs? Or both?
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So many patients just give up on seeking care when the treatment options have accomplished zilch for them, ie their EHR data dies off, ie they’re recovered. L O L
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New
#longcovid
diagnosis for me:
#craniocervicalinstability
. The virus (and likely other factors throughout my life such as antibiotic overuse, subpar nutrition, and repeated infections) weakened the ligaments/connective tissue in my neck and caused instability
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Resolve Therapeutics is conducting a double blind, placebo-controlled trial of its new anti-inflammatory biologic drug (RSLV-132) on
#LongCovid
patients. Primary endpoint is fatigue reduction. They’re also running a concurrent trial of the same drug in lupus patients.
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Marathon day of
#LongCovid
testing complete phew - skin biopsy to confirm small fiber neuropathy, EMG nerve testing on arms & legs (abnormal results), repeat tilt table test (POTS still very much present), and finally some more autoimmune blood work.
#IVIg
hopefully in my future?
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So, not only are the conclusions of the (poorly designed) study alarming/depressing (who wants to be sick for a YEAR?)… but reality is actually MUCH grimmer when you consider the limitations of using EHR data to track outcomes in this context.
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So, according to this pretty large Dutch study, rapid tests correctly detected covid in **27.5%** of asymptomatic, infected individuals. I mean, that's just pathetic.
"Commonly used rapid antigen home tests fail to reliably detect an omicron COVID-19 infection in asymptomatic people."
Another reason to act cautiously even if you test negative.
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@loscharlos
Thanks
@loscharlos
🙏🏼 I’d add - why is no one counting us???
@CDCgov
There could be 2M or 20M+
#LongCovid
patients in the US and after two years, we still don’t have any tracking infrastructure.
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Strange question probably, but has anyone found that meditation actually *worsens* their symptoms? I guess this might be happening to me because intense focus always flares my neuro symptoms, even if that focus is on my breath, or on trying hard not to think about anything.
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Italian researcher Dr. Carlo Brogna reported some interesting findings at the
#LongCovid
Coalition International Conference - he’s had success treating LC patients with a specific *antibiotic* regimen (that’s right, not antivirals).
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Spinal pathologies (eg CCI/AAI/TC) in
#longcovid
& other post-infectious patients deserve recognition in the media. As top neurosurgeon Dr. Henderson said to me, "people think these are rare conditions but they are actually quite common, patients just go undiagnosed for ages"
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Treatments that have changed my life for the better have gravely harmed others. Conversely, certain meds that others have benefitted from have caused severe & lasting reactions for me. Until there are more trials, this will remain our reality.
#LongCovid
#MECFS
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At least the authors call this out:
“Another weakness could be under-reporting of symptoms in the later periods, when patients had reported the outcomes close to diagnosis of covid-19 and did not continue reporting them as time from diagnosis advanced.”
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After much (painful) trial and error, we’ve finally figured out my daily “baseline,” aka the activities that won’t make my symptoms worse. If you had told me a year ago that my life would be reduced to this, I would’ve been inconsolable. 1/
#longCOVID
#MECFS
#POTS
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This evening a dear friend working on his PhD agreed to spin down my blood at his lab and look at it under a microscope in search of any objects that might suggest clotting.
@resiapretorius
would love your input on whether we should pursue this further.
#LongCovid
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@loscharlos
@Bob_Wachter
@ASlavitt
What’s amazing is that his 20 y-o son has had “serious lingering symptoms” since a Covid infection in fall 2020… yet it took him this long to meaningfully speak up. Better late than never I s’pose
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2 yrs
#LongCovid
; a little health update
This AM I unpacked 3 large boxes, did some tidying, & made myself an egg sandwich. All in all I was standing/moving around for ~an hour straight & my HR stayed in the 80-90 range. In 2020, walking to the bathroom would shoot my HR to 130+
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His team found neuro toxic peptides in the blood/stool/urine of c-19 patients, which they concluded were produced by gut bacteria with altered behavior due to SARS-Cov-2 infection. Apparently the virus can infect gut bacteria in addition to infecting human cells.
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Yet when I mentioned the possibility of CCI to my former neurologist and ME specialist, he said, and I quote, “that’s a bullshit theory.” The inadequacy of the American medical system continues to amaze
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Can‘t thank
@jenbrea
@julierehmeyer
and
@jeff_says_that
enough for sharing their ME + CCI stories publicly, which led me down a 6-month rabbit hole to my own CCI diagnosis. According to , 80% of ME patients showed craniocervical obstructions on MRI
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>2% of US population newly disabled by
#LongCovid
. This will have devastating social & economic effects for generations to come. If our gov. had a modicum of common sense/foresight they would go balls to the wall on developing treatments NOW.
New paper estimates 22 million US adults - 7% of the whole population - are suffering from
#LongCovid
, with 2.3% being disabled by it.
The state with most cases overall is California; the state with most Long Covid as a % of population is Rhode Island.
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When I saw that
@NewYorker
covered
#LongCovid
, I was thrilled. Historically, they've always been my favorite publication...but not anymore. I've cancelled my subscription. To say this article was a disappointment would be an understatement.
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Day 10 reinfection. Positive line came out faster and stronger this morning compared to the last 2 mornings, suggesting I’m having some sort of rebound without ever having fully cleared it in the first place. Neuro symptoms are raging. FFS go away!!
#LongCovid
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The most insidious type of minimizer is one that masquerades as an empath.
“Even if it is psychosomatic, what does it matter? They’re still suffering all the same.”
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To anyone who thinks managing chronic illness can’t be a full-time job, PLEASE educate yourself and think again.
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@MrkStdngr
Would your parents be willing to speak to someone to better understand your disease? Maybe from
@MEActNet
or a similar org? This has crossed the line into abusive now.
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The milder cases are unlikely to mention anything unless they know you’re in the same boat. The severe cases tend to disappear off the face of the Earth - out of sight, out of mind until one day years down the line, you think, “oh yeah whatever happened to that person..?”
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Dr. Brogna theorizes that bacteria produce these toxic peptides as a defense against the virus; but unfortunately for the infected person, this can result in neurologic dysfunction. He also found that “the bacteria do not stop producing toxins even when the viral load is absent.”
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Day 4 Covid reinfection as
#LongCovid
patient. Symptoms are not abating despite treatment (bebtelovimab on day 2, Paxlovid). RATs still extremely positive. Could use some feedback on timeline from other longhaulers - when did things start to turn for the better after reinfection?
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Because many have asked about my treatments (which is natural) - see below. But remember we’re so individualized that what worked for me might do nothing for or even harm you. Sharing only as inspo & potential research leads.
(Atlas chiro adjustments**)
@LygiaNavarro
Well, I'm currently dealing with a big setback due to re-infection & med reactions. But what got me out of very severe status to my highest level of functioning -- LDN, LDA, a hormonal contraceptive, GHK-cu peptide injections, and atlas chiropractic injections.
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Friendly reminder that you don’t ~need~ to have EDS to have developed CCI, [symptomatic] tethered cord, Chiari, etc. I’ve had genetic testing done and tested neg. for all known EDS genes, and I do not meet the 2017 diagnostic criteria for hEDS.
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I *strongly* encourage
@Cornell
to follow up with the infected students routinely over the next year to understand how many of them develop
#LongCovid
and to offer those students support - they will desperately need it. Whether or not they had “severe disease” is irrelevant here.
At Cornell University, in-person classes were shut down after 900 students tested positive, many with omicron.
There were no cases of severe disease, but there was concern that students might infect more vulnerable relatives during the holidays
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@GeoEduOne
Feels like the general public conflates “high risk” for death/hospitalization with “high risk” for LC (because they were never told differently)
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Because there seems to be a renewed interest in peptides, I figured I'd shared my experience. I am not a doctor, and this is not medical advice; it's simply a recap of my response to peptide injections.
#LongCovid
#pwME
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This brings my total “diagnoses” count to 5:
#postacutecovidsyndrome
(or
#longcovid
),
#POTS
,
#MECFS
,
#IIH
, and
#CCI
. To clarify, POTS, long covid, ME, and IIH are not causal - they are conditions that arose from damaged connective tissue in my cervical spine.
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If you’re a recovered
#LongCovid
#MECFS
patient or an able-bodied ally, THIS is where we need the most support - helping to organize memorable protests in major cities that the public cannot ignore
kudos to our friends in Berlin
Bewegend! 😶
400 Feldbetten vor dem Reichstagsgebäude mahnen den
#Bundestag
, mehr gegen
#LongCovid
und
#MECFS
zu tun. Über 300.000 Menschen in Deutschland sind betroffen.
Wer kann noch wegsehen? 🤷🏼♂️
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Is the best course of action here to just.. wait and see? Surely not.
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#LongCovid
treatments I’m considering that supposedly offer more systemic benefits:
1. IVIg or SCIg
2. IV phosphatidylcholine
3. Exosomes infusions
If you have experience with any of the above, would love to hear from you!
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The diagnosis explains all of my neurological symptoms, including 24/7 pressure headache, tinnitus, autonomic irregularities, insomnia, visual disturbances & more. I’ll admit I was surprised; I never once considered my cervical spine
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I was a patient at this clinic back in 2020. The physician managing my case said I didn’t have ME (even tho I had all the signs) and prescribed inappropriate treatments that led to a permanent worsening of my condition. I went from moderate ME to very severe in a matter of weeks.
To the
#MECFS
community: I feel I owe an explanation to you for behavior that many of you have noticed. When this whole, mad journey into
#LongCovid
began, I barely considered myself an "expert" (whatever that word means) in LC, let alone ANY simple understanding of ME/CFS. (1/n)
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@MrkStdngr
Please try and get yourself a hard collar (eg Aspen vista or Miami J) - you can order on Amazon. There are world-renowned CCI specialists that offer telemedicine consults, like Dr. Fraser Henderson. And of course the universe wants you 🤍
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Just diagnosed with intracranial hypertension (
#iih
) by vascular neurosurgeon at
@WeillCornell
from a blockage in my right transverse sinus seen in my MRI; doc said the depart. has seen a surge in
#LongCovid
patients since the pandemic. SO MANY THOUGHTS. >>> 1/
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Has any
#longhauler
successfully qualified for disability benefits? Just got my notice in the mail - evidently
#CCI
counts as a “back pain” according to my reviewers and therefore I am still capable of doing light-moderate factory work 😂
#POTS
is a de minimus heart condition &
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Uh, it really REALLY matters. It matters for research. It matters for treatment. It matters for funding. And it matters because it’s straight up factually incorrect and offensive to the millions of victims of this horrific disease.
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The mildest case is a guy with heightened allergy symptoms and fatigue - he can still function as he did before with no real limitations. The most severe case is a woman so intolerant to light that she’s lived in absolute darkness 24/7 since Nov. 2020.
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@cloudpup_
Doc was masked with KN95. His front desk staff and 2 patients in the waiting area were not masked.
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The prevailing theory wrt
#LongCovid
is endothelial inflammation➡️micro-clotting➡️hypo-perfusion➡️hypoxia to different organs➡️a whole host of symptoms. Could someone explain if/how this chain of events leads to
#CCI
in those of us with
#MEspine
?
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@dianaberrent
Diana - you’ve done a great deal for
#longcovid
patients, and for that we are all grateful. But you also deserve a bit of criticism for promoting an article so harmful to the movement solely because you happen to be featured in it. Both of those things can be true at once.
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“Overall, the level of T-cell responses was greater in rebound patients than in patients with early acute COVID-19 who did not experience rebound.” If an outsized immune response to viral remnants is to blame for rebound symptoms, could it also explain
#LongCovid
symptoms?
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I spoke with my doc about anticoagulants for
#longcovid
- he ordered a thrombotic marker panel. I tried to explain that micro-clots aren’t likely to show up in bloodwork. He wasn’t convinced. Any papers or videos I can share with him to change his mind? Thanks much ♥️
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Today marks 5 months since
#LongCovid
infection, 3 months with
#POTS
/dysautonomia, and 1 week into the Mt Sinai recovery protocol. Some (sad) personal news - my boyfriend and I were meant to start grad school together in ~2 weeks. Luckily we were both granted a 1yr deferral 1/
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I spent a year too ill to even compose a text msg, let alone navigate the SSDI labyrinth. The FIRST thing I did when I started to regain cognitive function was begin work on my disability app. It took weeks of me chipping away at it for a few minutes each day…
We push through cognitive dysfunction to file claims & are often denied.
#LongCovid
patients are at risk of losing their homes & are too ill to put up a fight. Some have looked into death with dignity laws bc they’ve been driven into poverty & see no help on the way.
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That’s funny, because this study from NZ with nearly 10x as many participants suggests otherwise, with <1% reporting benefits from exercise and 75% reporting a *worsening* of their condition.
#LongCovid
#Longcovid
can be helped with exercise. Done carefully and sensibly. Spread hope not fear, friends.
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@getlunacare
She did NOT set out to be a Long Covid specialist, this is just the nature of the demand these days (at least in New York, where a high % of population has gotten covid at least once).
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(Side note: for anyone who is considering gentle PT, but is deterred by the cost/potential covid exposure, Luna exclusively offers at-home sessions and is fully covered by insurance. My 2x/week appointments are costing me $0 out-of-pocket.)
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Received permission from a friend (not on twitter) to share her experience with
#guanfacine
. While the first 2 days of her trial seemed positive, she later ended up deteriorating significantly. She regressed to the point of being bedbound for a week before eventually quitting 1/
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Khullar frames HIV/AIDS patient activists as erroneously at odds with researchers.. but fails to acknowledge that those activists are HUGELY to thank for why a person with HIV can live an almost completely normal life just 30 years after HIV was a death sentence.
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This tendency - fear of losing ground, always always always needing to make progress - is at least in part to blame for why I got so severe in the first place.
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Please no one click, share, or QT the link to the New Yorker article written by that random education “journalist.” Remember, we want her work to fail professionally 🤍
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For monoclonal antibodies, there are free services that offer at-home infusions (while funding lasts). One available in NY is . Reach out to these companies and learn about their process NOW so you can hit the ground running at reinfection.
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Do you worry about accessing Paxlovid in a timely fashion? Stockpile some NOW.
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@timeforjaya
@brianvastag
the term “disabled types” is condescending & ableist enough on its own. moreover, as a disabled person who’s connected to many similarly disabled ppl online (because I cannot physically be IRL) I have NEVER met anyone who didn’t try desperately to get better
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"...if someone contracts COVID, or the Epstein Barr virus (which causes glandular fever), they appear to be at greater risk of developing a chronic illness like long COVID or ME (myalgic encephalomyelitis) if they have the genetics for hEDS."
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@ShaneyWright
In the US, PET MRIs are extremely expensive and insurance companies rarely approve them. Almost everything impeding progress is about $$.
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@matekbela
Former marathoner here. Almost wish I’d lived a more sedentary lifestyle beforehand - would’ve limited my ability to “overdo it” during the most sensitive time frame (first few months post-infection).
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Regardless of the significance of the images, feeling beyond grateful to have someone willing to stick their neck out for me. Many will have a much, much more difficult time getting a lab to work with them.
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@rndNumGen
@ShaneyWright
Yes, it was intra-oral. I only had the left side done, because my pain/tinnitus is much more pronounced there (though I did feel its effects on both sides afterwards, but the right side faded much more quickly).
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When Paxlovid and Evusheld become as ubiquitous as Tamiflu. At the very least.
...is usually my answer to “so, at what point should we relax safety measures?”
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