An important @NIH study on ME/CFS published today. While there is a lot of helpful information in this study, we have concerns about the autonomic testing and skin biopsy portions of this study, which were missing key elements of standard testing. 1/🧵
nature.com/articles/s4146… @NIH The authors conclude the abnormal autonomic tone they found is central in nature, but they did not assess parts of the peripheral autonomic nervous system known to be abnormal in prior ME/CFS research. 2/🧵

New report on #LongCOVID #POTS in the @TheLancet: We're glad to see this being highlighted, but it's unfortunate that the authors did not bother to mention the numerous medications available to help mitigate the POTS symptoms reported by this patient. 1/🧵thelancet.com/journals/lance… @TheLancet The authors only mention salt, fluid and exercise as treatment options for POTS. That is not sufficient treatment for the majority of people with #POTS, most of whom require medications in addition to non-pharma treatment approaches. 2/🧵

In this @CBSNews story, we ask why the @NIH is wasting $ studying computer games to treat brain fog, rather than treatments aimed at the underlying pathology of brain fog: inflammation, microclots & reduced blood flow to the brain upon standing. 1/🧵

cbsnews.com/news/first-lon… @CBSNews @NIH "NIH was late to start the clinical trial planning process, and then once it started in fall 2022, there was so much pressure to get these trials launched quickly that patient input was often sidelined," Lauren Stiles, president of Dysautonomia International 2/🧵

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/🧵

.@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/🧵

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/🧵

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/🧵 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/🧵

Important new case series from @dysclinic reporting outcomes in 7 #POTS patients who received SCIG and/or PLEX immunotherapy. A thread... 🧵⬇️ 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.

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. 🧵

🔥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)

New research on small fiber neuropathy and dysautonomia in hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD)! Read our 🧵👇 for details. Researchers in Switzerland screened 79 hEDS/HSD patients who had dysautonomia or neuropathic pain for small fiber neuropathy (sensory small fiber neuropathy can cause pain, numbness, tingling, and itching; autonomic small fiber neuropathy can cause dysautonomia).