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Dysautonomia Intl. Profile picture
@Dysautonomia
May 5 • 5 tweets • 3 min read Twitter logo Read on Twitter
New research from the US National Institues of Health confirms #dysautonomia and #immune dysfunction in #LongCOVID! 1/🧵

nih.gov/news-events/ne…
“Consistent with recent studies, people with #LongCOVID had problems with their autonomic nervous system. #Autonomic testing showed abnormalities in control of vascular tone, heart rate, and blood pressure with a change in posture.” 2/🧵
The results also showed that people with Long COVID had lower levels of CD4+ and CD8+ T cells and increases in the numbers of B cells and other types of immune cells, suggesting that immune dysregulation may play a role in mediating Long COVID. 3/🧵
NIH autonomic lab director Dr. David Goldstein, who co-authored this study, will be one if the many experts presenting at Dysautonomia International’s 11th Annual Conference: Advocacy In Action in DC this summer, July 14-17. Details at DysConf.org. 4/🧵
For those of us living with #dysautonomia or #LongCOVID, this is no surprise, but it’s good to see the NIH doing research on this and raising awareness. We urgently need more research to identify more effective treatments for dysautonomia and Long COVID! end/🧵

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More from @Dysautonomia

Dysautonomia Intl. Profile picture
Apr 20
.@Dysautonomia President Lauren Stiles and other patient advocates are quoted in this article exploring what the @NIH has done with $1.15B in US taxpayer funds allocated to #LongCOVID research. 1/🧵

muckrock.com/news/archives/…
Dysautonomia International advocates serve on several RECOVER committees & have been fighting hard to get the NIH to spend these funds on research that is urgently needed to develop more effective treatments for people with #LongCOVID (a majority of whom have #dysautonomia). 2/🧵
While there are some great people involved with RECOVER, RECOVER as a whole has failed to deliver & is hampered by excessive bureaucracy, lack of accountability for decision making, and NIH's failure to put experienced post-viral illness researchers in leadership roles. 3/🧵
Read 8 tweets
Dysautonomia Intl. Profile picture
Dec 29, 2022
The @TODAYshow did a story on #POTS interviewing @Dysautonomia International board member Dr. Miglis & @ahandvanish from @patientled, highlighting the high rate of POTS being diagnosed after COVID. Hannah & Dr. Miglis did great, but the reporter... 1/🧵
today.com/video/covid-19…
@TODAYshow @ahandvanish @patientled said "the good news is that many POTS patients recover, but it can take years." Unfortunately, the two longest & largest studies to date suggest that a majority of POTS patients do NOT fully recover, but many patients do see partial improvement in symptoms with treatment. 2/🧵
A survey of 172 adolescent onset POTS patients who had been seen at Mayo Clinic, an average of about 5 years after their diagnosis, found that only 19% of patients reported "recovery." 3/🧵 pubmed.ncbi.nlm.nih.gov/26979650/
Read 6 tweets
Dysautonomia Intl. Profile picture
Nov 24, 2022
Important new #POTS research from Karolinska Inst. funded by Dysautonomia International has found biomarkers associated with a hypercoagulable & proinflammatory state, enhanced cardiac contractility & hypertrophy, skeletal muscle deficits, cartilage protein deficits & more. 1/🧵 Image
The researchers used mass spectrometry to analyze proteins in the plasma of 65 #POTS & 65 healthy folks. They found >20 dysregulated proteins in POTS, then looked at how those proteins relate to each other in different pathways. All of this plasma was collected before COVID. 2/🧵
The strongest network interactions in #POTS were associated with a hypercoagulable state - upregulated expression of proteins related to platelet aggregation and activation. Small prior studies found increased rates of blood clots in POTS. 3/🧵
Read 6 tweets
Dysautonomia Intl. Profile picture
Aug 27, 2022
Important new case series from @dysclinic reporting outcomes in 7 #POTS patients who received SCIG and/or PLEX immunotherapy. A thread... 🧵⬇️ Image
These patients had severe POTS that didn't respond well to standard treatments. All of the patients reported significant improvement in their dysautonomia symptoms and their ability to function after SCIG and/or PLEX.
Notably, 4 of the 7 patients also had #EDS and #MCAS, and their symptoms improved as well on immunotherapy. None of the patients in the case series had adverse events from the immunotherapy. Read the abstract: link.springer.com/article/10.100….
Read 5 tweets
Dysautonomia Intl. Profile picture
May 21, 2022
A team of researchers from NIH, Harvard, Johns Hopkins & Mt. Sinai just published a case series on 23 previously healthy individuals who developed #POTS or other neurological problems within 1 month after receiving a #COVID vaccine. Let's dig in: 🧵
They found autonomic dysfunction, small fiber neuropathy, inflammation of small fiber nerves, and that immune proteins called complement were being deposited on the small fiber nerves, which is seen in some autoimmune neurological disorders. 🧵
They emphasize that their study does NOT conclusively confirm that COVID vaccines caused the neurological illness, but circumstantial evidence suggests immune dysregulation is likely involved. They call for further research to understand mechanisms and clinical trials. 🧵
Read 11 tweets
Dysautonomia Intl. Profile picture
Feb 23, 2022
🔥Hot off the press!🔥 New POTS research suggesting #POTS might be a mixed autoinflammatory/autoimmune condition from Dr. Grubb & Dr. Gunning at University of Toledo. Get ready for a thread...🧵👇
Comparing 35 POTS patients to 35 non-POTS patients, they found that POTS patients had significantly elevated cytokines and chemokines:
CD30
interleukin-1 beta
interleukin-6
interleukin-10
interleukin-17
interleukin-18
interleukin-21
interferon-gamma
MCP1(CCL2)
RANTES (CCL5)
They also found decreased levels of interferon-alpha & that all 35 POTS patients had platelet delta granule storage pool deficiency, which they believe is a result of chronic inflammation. Read the full article to learn more about these findings: mdpi.com/2073-4409/11/5….
Read 4 tweets

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