LongHaultotheTop

Pacing all the way to make the best of #LongCovid (March 2020), #ME/CFS, POTS. Hardest lesson: surrender gets me farther than striving.

[Outbreak Updates @outbreakupdates]

JUST IN: A new study finds that prenatal exposure to acetaminophen, used by over half of pregnant women, is tied to a 3X increased risk of ADHD in children.

Even low to moderate exposure during the second trimester showed concerning links.

[Dysautonomia Intl. @Dysautonomia]

There would likely be an even higher percentage of patients defined as neuropathic POTS if we actually had tools to assess vasomotor small fiber density and autonomic ganglia, or if anyone bothered to do GI small fiber biopsies in the POTS patients with GI dysmotility.

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

📢 It's becoming a tradition so... here is my Top 10 list of noteworthy #POTS studies of 2024, in no particular order! 🎉🎆🥂
1/🧵

#MedTwitter #NeuroTwitter #BrainHealth #Dysautonomia #LongCovid #MECFS #Neurology #Cardiology

[Amanda Crist @ZebraLoveCo]

“Thus, one could consider ME/CFS as an acquired ischemic mitochondrial myopathy (AIMM). The development of self-maintaining mitochondrial dysfunction out of primary vascular disturbances”🤔

Anaerobic metabolism ➡️ sodium & calcium overload in the cell➡️ mitochondrial dysfunction

[Covid Bag Of Dicks 🦠🛍️🍆 @covidbagofdicks]

Holy shit. Single best explanation of how N95 masks filter viruses. If you really think masks don't work, watch this video and you will be cured for fucking ever. Once you watch this you will know more than 92% of medical professionals in this country. https://t.co/U6eOPmX87Q

[CIDRAP @CIDRAP]

Study: 6% of US adults have long COVID, and many have reduced quality of life

https://t.co/cEFqDCU8Jg

Idaho, Puerto Rico, and West Virginia all had 8% or higher prevalence of long COVID.

[LongHaultotheTop @HaultotheTop]

@CardosoPedroMi1 @chydorina I don’t think that these are the same thing. From what I learned before, I understood plasmalogens to be a smaller building block than EFAs.

[Dr Graham Lloyd-Jones @DrGrahamLJ]

Here's a reminder of my take on #COVID-19 (the disease not the pandemic).

It's not what you think it is ...

A thread 👇
1/23

[Prof Doug Kell CBE #FBPE #FBPA🔶🇪🇺 @dbkell]

Microclots make macroclots: discovery w @resiapretorius and others that the clots removed from stroke patients are actually amyloid in nature, which arguably explains a lot. Rather significant, IMHO... preprint at https://t.co/X08SRX7Stv #TeamClots

[Andrea Fighting for #MECFS Diagnostic Biomarkers @MECFSNanoneedle]

@GeorgeMonbiot Hi. I just wanted to correct 1 fact in your story. 5 different teams have found "something in the blood" of #MECFS patients since 2016.
#MECFS blood is banned for donation in UK.
https://t.co/dcU7Ab1gvv

[Neurologist Mom @NeurologistMom]

⚠️ BRAIN SCAN STUDY ANNOUNCEMENT in BOSTON conducted by Dr. Michael VanElzakker @MBVanElzakker For details⬇️⬇️⬇️

“Now recruiting: Brain scan study of craniocervical instability (CCI)
Help us understand if CCI involves cerebrospinal fluid disruption and vagus nerve sensitivity

What to expect:
Pre-visit screening (over the phone or Zoom). Potential participants with neurosurgeon-confirmed CCI will share medical history information that will determine if you can participate in the scan. Many patients with surgically-implanted medical screws, plates, or stents will not qualify, but if you gather the surgical notes, we can check.

Visit in Boston: Participants who qualify for scanning will rest on their backs in a high-resolution MRI machine that can measure the movement of cerebrospinal fluid near the brainstem. You will experience an exam that will non-painfully stimulate the vagus nerve so we can test its sensitivity.

This is a study to test a specific hypothesis about brainstem function in CCI patients. This is not a treatment study.

If you are interested in participating as a CCI patient or a matched healthy control, please email [email protected] or call 1-617-726-4399 for more information.

What: A brainstem scan study of CCI
Who: Individuals who have been diagnosed with CCI by a qualified neurosurgeon
When: Currently recruiting
Where: Massachusetts General Hospital’s Martinos Center for Biomedical Imaging in Charlestown, MA
Compensation: You will be compensated $100 for study participation, and we may support some travel costs. We cannot give participants a CD copy of their personal MRI scan. We cannot give diagnostic information for any other forms of craniocervical or spine instability from this study.

Study of surgical-candidate CCI patients

•Diagnosed by specialist surgeon
•Study is in Boston
•We have some funds for travel reimbursement

Contact: [email protected]

[Emmanuel @ejustin46]

COVID-19 may cause lasting NEUROINFLAMMATION in the BRAINSTEM (the lower part of the brain that connects the cerebrum to the spinal cord)

Thanks to @DavidJoffe64
for this study
https://t.co/EfosySsk8Y

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

I previously explained how antihistamines work: https://t.co/LRbBIoONWM

This post will talk through different mast cell stabilisers, which are also common medications for mast cell activation syndrome (MCAS)

Blog: https://t.co/MfVIYoQCgc

#longcovid #postvac #MCAS

[Rocket 57 @rocket57.bsky.social @Rocket57]

Saw this on a local FB group.
The Canadian government quietly put this out during the summer.

16.7% of people infected had LC symptoms. Over half of that number is dealing with some noticeable limitations daily.

Apparently this isn’t newsworthy.

https://t.co/gOlDOIbRcG

[Emmanuel @ejustin46]

16 NEW and RECENT STUDIES SHARED TODAY,
all compiled into one comprehensive megathread🧵

The goal is to provide you with easy access to the studies that pique your interest, all of which have been summarized and illustrated for your convenience.

[Dr. Robyn Michaud @GiwedinAnangKwe]

Today we observe, not “celebrate”, Orange Shirt Day. It is our Remembrance Day. This day represents many lost children and widespread intergenerational trauma for our communities. Its a time to learn and reflect. #EveryChildMatters

[Céline @healingfromlc]

In the context of this new study, I would, once again, like to present this image of my #LongCovid capillaries (right) vs. healthy capillaries (left).

[Resia Pretorius @resiapretorius]

1/Our new paper is out, with @ArneauxK @DavidJoffe64 @PutrinoLab @dbkell @DrGrahamLJ @doctorasadkhan @SalamonSMD and Jaco Laubscher:
Vascular Pathogenesis in Acute and Long COVID: Current Insights and Therapeutic Outlook

A paper of hope for patients
https://t.co/w9EjMOXWF0

[👻ghost of submersibles ablaze🌊 @MECFScomrade]

This is why the narrative we’re “scared” of exertion infuriates ME patients. It takes incredible discipline and restraint to keep yourself from living life. That’s literally all we want. I have an insatiable lust for life that leaves me grief-stricken daily