Amy K

Making Sense of It All Hi! I’m Liz Neeley and I’m glad you’re here. Making Sense of It All is an outlet for my work at Liminal, which focuses on sensemaking in a noisy and complicated world. I built Liminal as an antidote t...

I just subscribed to Making Sense of It All!

buttondown.com/liminalcreat...

#myastheniagravis
#ionchannels

#MyastheniaGravis #congentialmyasthenia

This seronegative Myasthenic thanks you very much for the work you and your colleagues. Still waiting for science to catchup with answers to tidy up the diagnosis. Thank you for ‘following’ me which prompted me to find you. I am a UTSW neuro-muscular px too 😉

#LongCOVID #LongCOVIDkids
From UK COVID Inquiry on Children ……

#LongCOVID #PEM

I'm trying out @graysky.app at the moment, so I can use @bsky.app more easily on iPad. Anyone else using this or other workarounds for iPad or tablet?

#MEcfs #cerebralbloodflow

#hEDS #ehlersdanlossyndrome
Happy to see Chronic Pain Partners here.

Many long COVID patients adjust to slim recovery odds as world moves on There are certain phrases that Wachuka Gichohi finds difficult to hear after enduring four years of living with long COVID, marked by debilitating fatigue, pain, panic attacks and other symptoms so severe she feared she would die overnight.

Reuters: 'Many long COVID patients adjust to slim recovery odds as world moves on'

'The United States and some countries like Germany continue to fund long COVID research'

www.reuters.com/business/hea...

Infection Aftershock: COVID-19’s Long-Term Impact on Your Heart New research indicates that people who contracted COVID-19 early in the pandemic faced a significantly elevated risk of heart attack, stroke, and death for up to three years post-infection. Those with...

It must be absolutely exhausting to still be a denialist.

scitechdaily.com/infection-af...

Maternal COVID-19 infection associated with offspring neurodevelopmental disorders - Molecular Psychiatry Molecular Psychiatry - Maternal COVID-19 infection associated with offspring neurodevelopmental disorders

NEW: Maternal #COVID19 infection changes levels of CD4 proliferating T-cells, leading to alterations of astrocytes, endothelial cells, & excitatory neurons & an increased risk of neurodevelopmental disorders in the offspring. #MedSky #ObGyn #MedTwitter

www.nature.com/articles/s41...

Dysautonomia International + Vanderbilt Univ: new noninvasive blood volume test

x.com/dysautonomia...

We Just Got More Evidence That Long COVID Is a Brain Injury The exact nature of long COVID is still coming to light, but we just got some of the best evidence yet that this debilitating condition stems from a brain injury.

Signs of brain inflammation were present up to 18 months after first contracting the SARS-CoV-2 virus.

"We show that the brainstem is a site of vulnerability to long-term effects of COVID-19, with persistent changes evident in the months after hospitalization," the authors of the study conclude.

Thank you for your work and your voice Dr Al-Aly.

Long COVID science, research and policy - Nature Medicine This Review outlines the current state of scientific evidence on long COVID, discusses its impacts on patients, health systems, economies and global health metrics, and proposes a forward-looking rese...

My first post has to be about #LongCOVID

🔹 400 million individuals affected worldwide
🔹 $1 trillion in annual economic costs
🔹 Countless lives & communities shattered

The time for a comprehensive policy and research response is now!

Details in our review here www.nature.com/articles/s41...

Vyvgart (efgartigimod) - replacing IvIG after 7 years, here we go 🤞🏻

Tetrahydrobiopterin—A Cause of Orthostatic Imbalance in People with ME/CFS - Solve ME/CFS Initiative Dr. Avik Roy is the chief scientific officer and chief of neurobiology at the Simmaron Research Institute, a nonprofit organization researching ways to treat patients with ME/CFS or Long Covid. In 202...

Solve ME/CFS Initiative:
Dr. Avik Roy & co-authors examine orthostatic imbalance in people w/ #MECFS using an interesting new experimental model to dissect the metabolic missteps responsible for this effect.

Read our summary of the Solve-funded study
solvecfs.org/tetrahydrobi...

#MEcfs #CFS #PwME

#APOE4

Screenshot of abstract

Norwegian PhD thesis:
#MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): Clinical trials, medical treatment and pathomechanisms

Free:
bora.uib.no/bora-xmlui/h...

One paper under review not included

#MEcfs #CFS #PwME

#LongCOVID #MEcfs

Not completely functioning on cylinders today, but sounds like Rituxan wiping out Bcells could be a reason some report improvement?

Alternobaric Facial Paresis Alternobaric facial paresis, facial baroparesis, baroparesis facialis, or alternobaric facial nerve palsy is a neurapraxia of the seventh cranial nerve due to pressure effects.[1][2][3]

Closer to finding answers to barometric pressure induced stroke-like episode. Not just a brainstem migraine it appears. WeatherX ear plugs key in getting to this next step. Able to reverse the pressure on the middle ear during an episode. #bilateralvestibulopathy www.ncbi.nlm.nih.gov/books/NBK470...

How covid-19 spreads: narratives, counter narratives, and social dramas Trisha Greenhalgh and colleagues explore why inaccurate narratives about the mode of transmission of SARS-CoV-2 emerged early in the pandemic and shaped a flawed policy response, with tragic consequen...

How covid spreads: narratives, counter-narratives and social dramas.

Our paper for BMJ to inform the UK's covid-19 inquiry. So far, all the things we claimed in this paper have been borne out in the inquiry. This is an international scandal.

www.bmj.com/content/378/...

#MECFS

Everything is easier to understand when @weselymd.bsky.social explains it!!!! Important new #LongCOVID data. Thanks Dr Ely.
www.tiktok.com/t/ZPR7Vtrc7/

#MEcfs and #ApoE4
peeling back my onion back further ……

ApoE4 gene status + MEcfs
I am 4/4.

“The overlapping in clinical manifestations, imaging studies, HSV1 Infection and histopathological changes between ME/CFS and AD, raise the probability of the APOE ε4 alleles as a connector between ME/CFS and AD.”

solvecfs.org/research-and...