Elizabeth Weaver II 🧠 @NeuroWeaverATL Twitter profile | Pikagi

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

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GSU Brains & Behavior AD / NeuWriteATL / Disability Advocate /•MECFS•/40👇40/ Researcher:“The Long Haul” / *my views*🏳️‍🌈 B L U E S K Y same handle as above /

Atlanta, GA

https://t.co/Ptqo3BsMJE

Joined June 2021

Don't wanna be here? Send us removal request.

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Super excited to be working with my friend and colleague, CNN journalist and award winning 🏅 documentary film maker @r_prior on his upcoming book “The Long Haul” on #LongCovid and the #patientcentered revolution shaping policy on #chronicillness .

@r_prior

Ryan Prior

3 years

Thanks to @NeuroWeaverGSU from coming aboard as a researcher, comrade-in-arms, and major stress reliever on this project. I’m looking forward to many inspired, and inspiring, days ahead in the trenches of fact-checks, footnotes, and cutting edge research. 4

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

When people say “Getting Covid is inevitable, why not get it over with?” My response is, “death and aging are inevitable too, and look at the lengths we all go to avoid those.” #LongCovid #MECFS

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

Today I sat in as an advocate at a #Neurologist appt w/ a friend. W/o skipping a beat, he went into depression causing symptoms 4 women. For years, I heard about these DRs but fortunately never saw one. Today I said “I’m going to stop you right there” #NoGaslightingOnMyWatch

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Today I heard a doctor tell a patient not to feel sorry for themselves as they begged for certain at home accommodations. I said, don’t you get it, this is what it looks like NOT to give up, to fight for their life. This is an act of resistance, not surrender. #DisabilityRights

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

If your symptoms are up ticking right now, & you have a neuro disease like #MECFS or #LongCovid , remember it’s totally normal this time of year as the weather shifts, & the light changes angles. #TheOctoberSlide is well documented. Take extra care & rest while ur brain adjusts❤️‍🩹

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

🧵An important thread: At some point, if u are #Disabled & dating someone new, no matter how much that person loves u, they may at some point or another receive what I call the *Friends & Family Warning⚠️*… where a friend or family member of theirs warns them not to date u. 1/5

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

ME/CFS can be compatible with life, but incompatible with living. There’s a saying for the living, if you don’t use it, you lose it. The paradox of #MECFS is that if you use it, you will lose it, either temporarily or permanently. It’s the quicksand of the disease world.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@PJPrydderch Defensive, kinda confused when I told him what I thought was going on. Kept trying to take power and expertise away from the patient. It was… odd and deeply disturbing. Cognitively inflexible.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

People with disabilities are whole, dignified, complex, and worthy of love, even when it feels like everyone around us is working out their own sh*t. It’s all projections of internalized fear and pain. You are loved ❤️ 5/5

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

But here’s what they mean 👉“I struggle w/ caretaking & maintaining boundaries, u must struggle too” 👉“I’m terrified of death & I don’t want it close to me or you” 👉“I haven’t done work around ablism & don’t see disabled people as whole individuals“ 👉“I don’t trust you” 4/5

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@joespfeifer Yeah. When I stepped out for a moment, he insistently said she was suffering from anxiety because she was wearing a mask. Said Covid isn’t a problem because we now have vaccines. Just bizarre unintelligible nonsense.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

The warning to your partner may sound like 👉“are you sure you want date someone who has a disability?” 👉“What if they get sicker?” 👉 “How will you be happy if they can’t do all the things you can do?” 👉“I’m just saying this because I care about you” 3/5

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

It’s at a times brutal moment when the projections of an insecure and ignorant society are projected on the you, the person you are dating, and the relationship itself. And it’s hard not to internalize it. 2/5

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

We need to completely rethink how spaces are accessible 4 people w/ brain damage. Hospitals w/ harsh lighting & sounds. Doc offices w/ scents & music. These are low hanging fruit. What would u like to see as we barrel towards a large section of pop w/ #MECFS & #LongCovid ? 👇

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

The chronicity of brain diseases like #MECFS & #LongCovid bring up so many issues around identity. Try taking a personality test & you’ll find yourself wondering if you should answer questions from the vantage point of your “old” self or “new” self. And where is the line?

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

There’s a reason horror movies use the plot-line of gaslighting the main characters as a form of intense anxiety for the audience. It’s because it’s traumatic. Even watching it is stressful for social brains. #MECFS #LongCovid

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Some docs: “A virus can’t remain in your system and cause disease or symptoms years later after you “successfully” fight it off. It’s in your head.” Science: HIV/AIDS POLIO PRIONS POX/SHINGLES EPSTEIN BARR HERPES LYME COVID Hundreds more… #BelievePatients #LongCovid

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

8 months

Covid19 didn’t just disable millions, it disproportionately killed disabled people. My brother, David Weaver, Ph.D., explores this in his new open access paper: The mortality experience of disabled persons in the US during the COVID-19 pandemic 1/3

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The mortality experience of disabled persons in the United States during the COVID-19 pandemic

Abstract. New data from the Social Security Administration suggest there were 260 000 excess deaths in the United States among current or former disability

academic.oup.com

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

The new preprint examining #LongCovid biomarkers, by @VirusesImmunity & @PutrinoLab , points 2 THE usual suspect: #EpsteinBarrVirus . We need an antiviral & vaccine. It’s out there running free. How many times does this virus have 2 show up in a lineup before we put it behind bars?

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

Patient w/ #LongCovid or #MECFS for YEARS 2 fam, friends & doctors: “I can’t walk. I’m too weak to function or leave house.” Response: silence Patient: gets a mobility device like cane/wheelchair. Response: “OH MY GOD, what on earth is wrong with u?” The shock is shocking🤦‍♀️

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

With #MECFS , in order 2 survive, u have to learn to let go. Not 90%, but 100%. Completely surrender. Zero effort, not in thought or movement. Sometimes for minutes, & for people who are severe, sometimes for years. U have to learn how to completely give in…without giving up

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

In light of recent misguided science journalism activity around #MECFS & #LongCovid , I’d like to invite @TaylorLorenz @julierehmeyer @brianvastag @davidtuller1 @meghanor @zeynep to join me & @r_prior next week 4 a talk/ panel about science journalism rooted in disability justice.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

The balance between the inseparable forces of Effort & Surrender is infinitely more delicate & complex w/ #MECFS . Everything we’ve been taught about striving & endurance & gain no longer applies. To gain, u must surrender w/ skilled precision. Your life depends on it.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

After a rough year of journalists botching #LongCovid / #MECFS , I’m excited to report that I wrote a grant w/ a fantastic team @DisabledSouth @r_prior @theGraySpaceSZ to train journalists on how to write about neurological #disability 👉by prioritizing patient lived experience🤞

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

To my Neuro- leaning #MECFS #LongCovid researchers, what do we make of the significantly larger brainstem (pons & whole) in LC & MECFS patients from the latest MRI study? @VirusesImmunity @dbkell @resiapretorius @vdcalhoun

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@uterati_rampage 💯 It is an absolute barrier to proper care

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

People w/ #MECFS are warriors. Everyone says people who come back from near death, have immeasurable resilience, a wisdom from the experience. Imagine living that way day in & out, living on that event horizon permanently. There isn’t an English word for that kind of strength.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

Molecular blood tests for #MECFS are in development. This is one of the groups doing this kind of biomarker research and it will change the entire game. Biomedical treatments will change, and EQUALLY important, biosocial treatment of patients will change.

@OpenMedF

Open Medicine Foundation

1 year

People with ME/CFS can wait years for diagnoses; biomolecular tests are finally in development 👉 This article proudly highlights the groundbreaking work of OMF supported researchers, Ronald W. Davis, PhD, Alain Moreau, PhD, and Maureen Hanson, PhD

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Essential to transforming the culture of chronic illness in society will be training & supporting medical professionals, researchers, & science communicators who HAVE complex illnesses like #MECFS , #MCAS , #EDS , #Lyme , #LongCovid . Their seat at the table will change the game.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

It took researchers & patients until NOW 2 find a living biomarker 4 #ParkinsonsDisease . Only made possible w/ incredible amounts of money & community support. The economic & societal burden of #MECFS cannot be underestimated. We need funding NOW @NIH

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

It’s official. #Covid infects the brain 🧠 directly. Not surprising at all. I thought it was strange, the folks who’ve been saying there was no chance #Covid infected the brain directly 🧐 Also not shocking, it was found in #brainstem & #basalganglia

@microbeminded2

Amy Proal, PhD

@microbeminded2

3 years

4/ Importantly, SARS-CoV-2 RNA was detected in the brains of all 6 late cases and across most locations evaluated in the #brain in five of these six, including a patient who passed away at day 230. Brain regions in which #virus was identified included brainstem and basal ganglia

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

7 months

*Call for #MECFS research ideas* PLEASE SHARE I've been on the NIH #NINDS #MECFS Research Roadmap Working Group this past year, & we have made significant strides in outlining priorities for future research of MECFS. Many priorities are now open 4 public suggestion & comment👇

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Coming down w/ #MECFS or #LongCovid , is like a cutthroat game of musical chairs: whatever u were doing when the music stopped, is exactly where u will stay, frozen & that’s if u r lucky. At best, you’re sitting but the music never plays again. At worst, you’re out of the game

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Now imagine what it’s like when your life depends on people believing you. That’s what it’s like to be gaslit by the medical providers. It’s a real life horror flick. #MECFS

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Relationship between Epstein Barr virus #EBV & multiple sclerosis #MS in living color. 👇 IMO, in the next 20 years, we will learn, this link is not the exception, it’s the rule. Pathogens 🦠 cause #brain disease long after the acute infection is over. #Alzheimers #HSV #LongCovid

@EricTopol

Eric Topol

3 years

Just out @ScienceMagazine The link, as in cause and effect, between Epstein Barr virus (EBV) and multiple sclerosis

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 months

People with Long Covid & #MECFS have elevated glutamate & N-acetyl-aspartate levels in the posterior cingulate cortex compared w/ healthy controls. I’ve maintained we need to focus on #glutamate as a path of symptom intervention. Read more👇

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

I despise how accurate this is… #satire #ortruth #MECFS #LongCovid

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

I say this because I want people to understand the disability of these patients. There is no chronic fatigue. There is chronic severe brain injury. Over and over. Day after day. We need the kind of funding that matches the disability, not the name. @NIH @CDCgov

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

According to the criteria set for the Glasgow Coma Scale (GCS), patients w/ sometimes moderate, but definitely severe #MECFS easily slide into the category for “Severe Head Injury” multiple times per day. These patients’ rooms at their homes look like ICUs. #MECFS #LongCovid

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

6 months

We will NOT solve #MECFS / #LongCovid & other diseases that cause #disability w/o allowing the people it affects the most to lead. PWD must be in scientific leadership roles. I wrote a piece for @statnews w/ @_KianaRJ urging the NIH 2 implement this tenet of #DisabilityJustice

@statnews

STAT

6 months

While the NIH has been working toward inclusion of underrepresented groups in the scientific workforce, disabled people have been mostly overlooked in those missions.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Will be closely following the research of Leighton Barnden & his funded research by @MEResearchUK looking at the reticular activation system in the brain stem of #MECFS patients, using a 7-Tesla MRI. This is definitely a game changer for a biomarker & understanding pathology 👏

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

🧵 People w/ #MECFS &/or #LongCovid need #PostExertionalMalaise - informed wrap-around care. Anything less, & remarkably we are better off outside clinical settings & fending 4 ourselves at home. Here’s what that could look like f/ clinical policy to patient rooms👇 @CDCgov 1/6

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Important distinction👇 #LongCovid isn’t literally long lasting Covid, it’s a new delayed onset distinct disease often found in neuro, cardiovascular & immune systems.Similar to how #MultipleSclerosis wouldn’t be considered = to an #EBV infection.The 2 are connected but different

@ahandvanish

Hannah Davis

3 years

I think a lot of people assume #LongCovid is a continuation of the acute COVID symptoms, that just take a long time to get over. In reality it is an often delayed onset of *new* neurological, immunological, cardiovascular, and systemic symptoms. 1/

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

WEARABLES & DEVICE 🧵 What do you wear or use that helps your chronic illness or disability? Some of these devices are game-changers. Let’s say what we love, dislike, or are curious about Personally I ❤️ #RedLightTherapy & my 🍎⌚️& I’m curious about #VieLight & #TaoPatch

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

People w/ disabilities will not have equal access or equity until those same people are invited to the table to help shape policy. A lot of well meaning people will not & truly can not understand the nuisance of accommodations unless people w/ disabilities pull up a seat.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

I’m excited & honored to announce a “Science Journalism & Disability” Pop-up Panel & Discussion this coming Tues, Nov 15 @ 5pm. As we have been sadly reminded this week, how we write abt disability matters.Researcher, sci comm, student, patient, ally, all are welcome. Pls RSVP

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

🧵 Policy not allowing virtual accommodations as an option for immune compromised or disabled folx b/c other people will take advantage of it, is like saying we shouldn’t have handicap spots for cars, because a non-handicapped person might park there. 1/3 #DisabilityRights

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@klmatter Defensive, kinda confused when I told him what I thought was going on. Kept trying to take power and expertise away from the patient. It was… odd and deeply disturbing. Cognitively inflexible. Unfortunately I had to step out for work and he patronized her repeatedly.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

If u have what people consider an invisible disability, coming out of the disability closet can be complex&painful.People r met w/ abandonment&invalidation.Others project their insecurities of vulnerability onto u.Pride happens when we shine a light on shame. #DisabilityPrideMonth

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

🧵 I think what confuses a lot of people about how to treat #MECFS & #LongCovid has to do with their effects on the autonomic nervous system & how this system has inputs from “bottom-up” disease processes & also “top-down” behavior inputs. Keep reading 👇

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

6 months

Deep 🧠 Thoughts on #MECFS : Based on my lived experience & neuro background, I would wager that a large amount of #MECFS brain symptoms are not due to lack of energy on excitatory neurons, but lack of energy on inhibitory ones, leading to over-excitation & cell death

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Today @r_prior & I met w/ 1 of my personal&professional heroes, Stanford geneticist Ron Davis,a pioneer of the #HumanGenome project.We discussed @OpenMedF studies on #MECFS & #LongCovid ,as we piece together the complex story of post-viral illness in the upcoming book #TheLongHaul

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@TamikaD_Smith Wow. That is so generous. I’m sure she would love that.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

You’ll have to face questions like, who am I if I don’t behave the same way I used to? I’m I now an introvert if my nervous system struggles to withstand crowds or am I still the extrovert who couldn’t get enough socialization if I tried?

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

And how do I make room for the dynamic nature of self? It’s a lesson in impermanence I haven’t yet learned but I’m trying to explore. It might take many lifetimes, but in this lifetime, I have an incredibly difficult teacher who requires abundant humility, #MECFS

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

For someone who just tested positive for acute #Covid infection, other than radical rest & paxlovid… What are our best practices, one page resources (so it’s not overall complex for folks with limited brain power) and first line med recommendations? 👇 post & share 🙏🏼

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

At what point, are we becoming new individuals as we accept and embrace our limitations and different abilities? Am I clinging to old ideas of my self that no longer serve me? Is this why holding onto our “selves” in buddhism leads to suffering?

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

@ManvBrain What you’re coming up against & what you wrote about, the anger, the defensiveness, all of it, is trauma. Medical trauma. These people have been abused beyond what you can imagine, left for dead, & gaslighted. This isn’t the moment to get defensive or gloat.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Honored that our #LongHaul book about #LongCovid is featured in this month’s @ScienceMagazine . The subtitle mentions the empathy found in the pages. Empathy is our sharpest weapon when it comes to complex disease…if we listen closely to the patients, they have the answers #MECFS

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@ScienceMagazine

Science Magazine

@ScienceMagazine

2 years

Alien planets are shrouded in hazes that hide clues to their makeup. Lab experiments could help clear the view. Read this @NewsfromScience cover story and more in the latest issue of Science:

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

2 questions for our community for an upcoming interview w/ a well known medical site 1. What is the main takeaway u would like the public to know about #LongCovid 2. What tips, other than rest, do u have for someone who is just getting over the infection & still not feeling well?

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

@thephysicsgirl 1. It’s not just a long bout of Covid or recovering slowly. It’s a distinct vascular/ endothelial/ neuro disease process 2. What is post exertional malaise- possibly hypoxia- reperfusion injury 3. MECFS 👈 important

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

This week, @r_prior & I have the honor of interviewing some big neuroscience / policy people as we research what happens in the brain during #LongCovid & how our scientific understanding of post viral illness affects policy and vice versa. @MBVanElzakker @NINDSdirector @NINDSnews

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Critical explorations of colloquial terms like “Brain Fog” are a vital practice in science translation.Our brains automatically minimize disabling conditions when the language paints a simple picture. When, in fact, symptoms like #BrainFog & #PEM r devastating neurological events

@edyong209

Ed Yong is not here

2 years

🚨I wrote about “brain fog”—one of the most common & disabling symptoms of long COVID (and many other pre-pandemic conditions), and one of the most misunderstood. Here’s what brain fog actually is, and what it’s like to live with it. 1/

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Do I love the city and it’s energy or must I live far away from the noise? Am I still the risk taker who loved adrenaline or must I measure every ounce risk and maintain the utmost level equanimity in every situation?

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Speaking with @microbeminded2 this week, we discussed how pathogens can easily affect connective tissue. Other tissues are reservoirs, why not connective tissue? It’s not exempt in anyway, maybe we will eventually see, it’s even preferred #CCI #MECFS #LongCovid #ConnectiveTissue

@HaulerLong

LongHauler

3 years

I have craniocervical instability (CCI). Diagnosed with upright MRI in flexion, extension and rotation. Covid triggered it. This is not new, the surgeon who diagnosed me has seen viruses and other pathogens do this before. Covid is not different. #MEspine #CCI #LongCovid

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

🧵People w/ #MECFS need highly specialized care mostly b/c there are many paradoxes when treating the disease. 1 treatment paradox is for the high incidence of medical trauma. There are 3 ways we treat #PTSD that are contraindicated in treating the trauma of #MECFS patients👇1/4

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@dystopia72 It’s very true. We are paying customers and yet they are in charge. I don’t think so. Our money says otherwise. You work for me, sir.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Here’s some info on the preprint

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

@ManvBrain This is NOT the moment to dig your heals in and defend yourself to the entire group of people w/ disabilities. If you are proud of angering disabled patients, take a step back.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

11 months

Sitting on the ME/CFS NIH working group of council today as a lived experience expert. Today’s webinar is the Immune System. Dr. Nancy Kilmas is talking to us now about the need for clinical trials for things like #LDN 👏

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

Our society can’t seem to shake the bogus idea we are imagining symptoms if we can’t see them on our “modern” technology.Even at the end of this @NPR , they proclaimed, #LongCovid is real,but may be anxiety.That backhanded affirmation reminds me of “hate the sin, love the sinner”

@NPRHealth

NPR Health News

3 years

New clues to the biology of long COVID are starting to emerge

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

Gathering more info for public facing #LongCovid awareness: • How hard is it rn to get a Long Covid diagnosis? • Anyone know any stats on length of time it takes on average? • What are the barriers? TY to the patients who provide this info. I will amplify your message #MECFS

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

The Long Haul project is more than a book about #LongCovid . @r_prior & I had an exciting meeting w/ @MEActNet today about how to leverage #TheLongHaul into activism & policy to support people living w/ complex diseases like #LongCovid & #MECFS . Exciting things are in the works…

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

And it’s fascinating to see which people around you see directly to your authentic self and which cling tightly to your current bodily restrictions. But the larger more philosophical questions linger…

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

We discussed #AnatomicalSanctuaries aka #ImmunePrivilegedSites aka #ViralReservoirs talking to Amy Proal today & their relationship to #LongCovid & #MECFS ; & importantly how if you listen to patient symptoms, they can drive your hypotheses. @microbeminded2 #TheLongHaul @r_prior

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

Doctor’s offices and specialists in these fields should have drive up to door parking when possible, without the use of elevators, stairs. Office policy should always include tele-health options. Requiring severe MECFS patients to drive is barbaric. 5/6

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

3/4 🧵 But ignoring the underlying disease input into the system & only changing one input will not be enough for most autonomic dysfunction. It can only move the needle a bit. & 4 people w/ advanced disease coming from the “bottom”, u won’t even touch the autonomic dysfunction

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

Manual or physical therapy should understand the energy envelop as a hard line, not a negotiation. 4/6

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

This is unsurprising yet still alarming. In the future, we will figure out infectious agents “set the stage” for many neurological diseases. Death is not the only consequence of Covid. How can we emphasize this enough? #LongCovid #Alzheimers

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

#MECFS is unique in that less is almost always more. In the clinical setting,we need environments that do not have strong smells, patterns,lights or sounds.Every particle of energy we use 2 process the world subtracts f/ an empty mitochondrial bank.The consequences can b dire 2/6

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

8 months

David argues that “clinical trials & other research should consider including disabled persons as specific study groups as the severity of their underlying health impairments is likely comparable to that of persons of advanced age.” 3/3

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

11 months

Trying out visible + w/ the polar band for the first time. Wow, lots of overexertion notifications when walking or standing. For those using it, do you go w/ the already determined heart rate limits or choose your own? If your own, how did you decide on those? @visible_health

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

@ManvBrain Jeff, please don’t die on the “child’s hill” here. It’s hard to watch this. Everyone can see it but you.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

It’s utterly lazy to lump an entire population of #LongCovid sufferers in the messy black hole of “this might be anxiety”. It also ignores the shame and guilt that comes with that diagnosis when the implicit message is “you are causing this.” We have to do better.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 months

ME/CFS RELAPSE SERIES: I’ll be exploring the understudied phenomenon of #MECFS relapse 4 the next month. I’m curious abt moderate & severe relapse. I’ll be asking Qs like: How does it start? What’s the difference btw crash & relapse? How long does it last? + Much more 1/2

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

I’m happy, sad, angry, hopeful… rainbow of emotions as we get nearly half a billion dollars to study #postviral Covid. This research will directly impact #MECFS patients and our collective knowledge on post viral illness.

@NIH

NIH

3 years

#NIH has awarded nearly $470 million to build a national study population of diverse volunteers & support large-scale studies on #LongCOVID . These awards pave the path to gain greater understanding of the long-term effects of #SARSCOV2 . #RECOVERcovid

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

The interactions from clinical providers should be slow and deliberate with the use of low voices. Providers should know that most of these brain injured patients have complex medical trauma and the care should be trauma- informed. 3/6

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

1 year

Finally, and this list is not exhaustive, at home health care providers should extensively understand sensory sensitivities and limitations on talking and walking. 6/6

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

While at first glance, statements like “the symptoms are real…even if it’s anxiety”, seem affirming, they are just dangerous remnants of stubborn foregone ideas that need to be canceled ASAP if we are to make any progress in understanding pathologies of the brain.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@Altcoins327 I think it makes sense to listen to the patient if they say they are sure it’s not.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

I imagine for pw #LongCovid , it can be hard to speak your truth. For millions of people w/ #MECFS telling our truths meant invalidation,apathy,or worse. But the truth was all we had. Now, we have science. The 2 are the same. “Speak the truth, even if your voice shakes.” - #MKuhn

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

I’ve got a family member with new low blood pressure, that needs some help boosting blood volume, but has diabetes. What are y’all’s favorite #POTS salt drinks that aren’t loaded with sugar? 🙏🏼 #NEISVoid #MECFS #LongCovid

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

There needs to be an accurate term for the trauma associated with #ChronicIllness because even #ComplexPostTraumaticStressDisorder doesn’t describe the ongoing nature. How about Complex Ongoing Traumatic Stress Disorder? After all, there is no “POST”… when you never get better.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

8 months

“there were 260 000 excess deaths in the United States among current or former disability beneficiaries during the first 22 months of the COVID-19 pandemic. These beneficiaries accounted for 26% of all excess deaths in the United States during this period.” 2/3

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@NeuroWeaverATL

Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

🧵 PSA for people w/ disability who live alone. Do not procrastinate planning for emergencies.When my pipes burst recently & I had no water for 2 days,I quickly realized how precariously dependent people w/ disabilities are on not only power & water but also on social safety nets

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

3 years

First up, was the brilliant Mike VanElsakker @MBVanElzakker from @MGHNeuroSci @Harvard @TuftsUniversity with his research exploring vagus nerve infection and it’s connection to long term post viral illness. #LongCovid #TheLongHaul #MECFS

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

2 years

🧵 2/4 So if you have patients w/ symptoms of autonomic dysregulation or failure, it may be tempting as a psychologist or a person with behavioral training to lean into trying to shift the set point by giving the system input from behavioral adjustments.

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

10 months

When I heard @stellajyoung say this in her @tedxsydney talk, I knew I had to share it w/ the millions of people dealing w/ #MECFS & #LongCovid who are being told to just change their attitude. “No amount of smiling at a flight of stairs turns it into a ramp.” Truth, Stella 🙌

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

9 days

@SmithCaitl7900 This may be the same doctor. Very similar vibe

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Elizabeth Weaver II 🧠

@NeuroWeaverATL

7 months

This is a moment for our community to give direct feedback on the direction in which we feel research needs to go. This is a pipeline for shared power and an opportunity to be heard. This is where citizen scientists and patient experts can shine! #MECFS @LisaAMcCorkell

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