Amy K
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ack025.bsky.social
Amy K
@ack025.bsky.social
Links+follows related to: Ehlers-Danlos + Lyme + MEcfs + Autoimmune (Myasthenia Gravis, Sjogren’s, Hashimoto’s) + POTS + Mast Cell + ApoE (4/4) + Bilateral Vestibulopathy + BPPV + SIBO + migraine + mito myopathy + Long COVID + LMCA & Celiac Artery Stenosis
Parallel study on human muscle-type AChR by @colleennoviello.bsky.social, Ryan Hibbs, and colleagues!

Wonderful that we agree on many points, while also making distinct and novel discoveries on AChRs in myasthenia gravis

(Posted on the bird site but somehow forgot here 🤦‍♂️)

bsky.app/profile/coll...
Pretty excited about this work looking at high-resolution mechanisms involved in the autoimmune disease myasthenia gravis! Please read our pre-print :D www.biorxiv.org/content/10.1...
January 29, 2025 at 3:56 PM
#LongCOVID #LongCOVIDkids
From UK COVID Inquiry on Children ……
From the closing statement at the UK COVID Inquiry on Children and Young People 27/11/24.
Sarah Hannett KC

"Long Covid is a new childhood disease whose prevalence is equivalent to childhood diabetes"

#LongCovid #LongCovidKids #CovidInquiry
November 29, 2024 at 2:12 PM
November 22, 2024 at 1:55 AM
Reposted by Amy K
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?
November 13, 2024 at 1:58 AM
I finally found a chart I'd been looking for in prep for @johnvsjonvsme.bsky.social Scary Science!
'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal
November 22, 2024 at 1:48 AM
#hEDS #ehlersdanlossyndrome
Happy to see Chronic Pain Partners here.
Hello Blue world! We have just arrived and are ready to bring you all things #EDS related you know and love just as we did on Twitter! (We are still there for now too.)

Bear with us as we set up house and get settled in, but expect the same great content as always!

#EhlersDanlosSyndrome #hEDS
November 18, 2024 at 12:58 AM
Reposted by Amy K
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...
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.
www.reuters.com
November 14, 2024 at 4:40 PM
Reposted by Amy K
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...
Maternal COVID-19 infection associated with offspring neurodevelopmental disorders - Molecular Psychiatry
Molecular Psychiatry - Maternal COVID-19 infection associated with offspring neurodevelopmental disorders
www.nature.com
November 10, 2024 at 8:25 PM
Dysautonomia International + Vanderbilt Univ: new noninvasive blood volume test

x.com/dysautonomia...
x.com
x.com
November 11, 2024 at 1:51 PM
Reposted by Amy K
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.
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.
www.sciencealert.com
November 10, 2024 at 2:59 AM
Reposted by Amy K
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...
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...
www.nature.com
October 19, 2024 at 5:49 PM
Vyvgart (efgartigimod) - replacing IvIG after 7 years, here we go 🤞🏻
September 6, 2024 at 12:35 PM
Reposted by Amy K
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
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...
solvecfs.org
September 4, 2024 at 9:53 PM
As the population ages, we can expect a precipitous rise in the number of Alzheimer's patients. But a recent study provides hope that we may be able to mitigate this onslaught with diet.
scottcanderson.substack.com/p/a-twisted-...
A Twisted Tale of Genes, Microbes, and Alzheimer's, Part 1
Bacteria are associated with a gene for Alzheimer's. Can we control them?
scottcanderson.substack.com
April 27, 2024 at 2:22 PM
Reposted by Amy K
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
April 26, 2024 at 1:02 PM
For people in or near New York City (or who can get there)

Looks like an opportunity that is worth highlighting widely
@VirusesImmunity = Prof. Akiko Iwasaki
twitter.com/postviraltri...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
February 7, 2024 at 11:34 AM
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...
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]
www.ncbi.nlm.nih.gov
November 19, 2023 at 1:39 AM
Reposted by Amy K
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/...
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...
www.bmj.com
November 1, 2023 at 7:14 PM
Everything is easier to understand when @weselymd.bsky.social explains it!!!! Important new #LongCOVID data. Thanks Dr Ely.
www.tiktok.com/t/ZPR7Vtrc7/
Wes Ely MD, MPh on TikTok
#New #news about #serotonin and the #mechanism of long Covid. #Diet and #absorption reduced by #viral #infection. #Platelet abnormalities. #Vagus #nerve and #hippocampus issues causing #memory #proble...
www.tiktok.com
October 17, 2023 at 10:14 PM