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#pots

6 posts6 participants1 post today
Public
Heidi

I'm in an uncomfortable #POTS flare. I hurt head to toe. Odd places. Muscles and ligaments. Migraine. Heating pad, high test medical marijuana and hopefully some rest. I still went square dancing. I figured if I'm going to be miserable I might as well have fun doing it. I may regret it tomorrow. Lol.

Continued thread
Public
Martin Rücker

@riffreporter Ebenfalls auffällig: Österreich war schneller – dort gibt es bereits #OffLabel Medikamente als Kassenleistung – und hat zudem deutlich mehr Medikamente auf seine Liste aufgenommen. Über die Erfahrungen dort mein aktuelles Interview mit Prof.
Kathryn Hoffmann: riffreporter.de/de/wissen/oest Ob die zunächst also max. 4 Wirkstoffe (der fünfte ist zur Prophylaxe) auf #LongCovid beschränkt bleiben, wie vom Bundesgesundheitsministerium
initial beauftragt, oder wie in Österreich auf #MECFS #POTS #PAIS erweitert werden, lässt die BfArM-Publikation noch offen. 🔚

Ein Haufen weißer Tabletten und Kapseln unterschiedlicher Form liegt verstreut auf einer ebenfalls weißen Oberfläche.
RiffReporter · Long Covid & ME/CFS: Wie die Off-Label-Liste in Österreich funktioniert, warum die Blutwäsche fehltBy Martin Rücker
Public
Tom Kindlon

US research

Dysautonomia in long COVID is prevalent and could explain the frequency of symptoms

medrxiv.org/content/10.1101/20

#dysautonomia @dysautonomia #pots @pots @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

medRxiv · Dysautonomia in long COVID is prevalent and could explain the frequency of symptomsBackground Long COVID presents with a variety of symptoms. Some of those symptoms could be related to autonomic dysfunction. Our aim is to evaluate the prevalence of autonomic dysfunction in long COVID patients. Methods We conducted a cross-sectional study and included all consecutive patients enrolled in several clinical research studies. We performed the following autonomic dysfunction markers: heart rate variability, heart rate, systolic and diastolic blood pressure changes during NASA lean test, cardiopulmonary exercise testing and a COMPASS-31 scale. We used linear regression to calculate the contribution of each dysautonomia measure on symptom burden as measured by the modified COVID-19 Yorkshire scale. Results We included 100 patients for this study. Our sample had a mean age of 56+/-11 years, included 53% minorities and 32% were women. Dysautonomia as defined by an abnormal COMPASS-31 was seen in 82%; 95% 72-89 while cardiovascular resting dysautonomia as represented by an abnormal heart rate variability was seen in 60%; 95% 48-70 of the population, orthostatic hypotension in 12% and POTS in 10%. In our adjusted analysis, we found that the beta coefficient for the COMPASS-31 score (0.37) was significant on changes in a self-reported long COVID symptom burden. The orthostatic intolerance and gastrointestinal domains of the COMPASS-31 was associated the highest long COVID symptom burden. Conclusion Dysautonomia is common in long COVID patients and contributes to the overall symptoms seen in long COVID. Identifying dysautonomia has important diagnostic and therapeutic implications. ### Competing Interest Statement The authors have declared no competing interest. ### Clinical Trial NA ### Funding Statement Yes ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: All studies were approved by the research ethics committees at the Miami VAHS and NOVA Southeastern University and all participants signed informed consent prior to participation. Miami VA is the IRB of record I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data cannot be shared publicly because it is owned but the Veterans Affairs.
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Public
Barbara Wimmer - shroombab

Vergessen hab ich außerdem oben in der Liste:

- Menschen, die mir ihre alten E-Book-Reader schenken, die sie nicht mehr brauchen und die seither regelmäßig im Einsatz sind
- Menschen, die mich bei mir zu Hause besuchen, auch wenn wir vorher gar nicht so "nah" waren, dass Hausbesuche auf der Tagesordnung standen

Auch euch DANKE.

#MECFS#postcovid#mcas
Public
Tom Kindlon

(UK)
"I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME & #longCovid ..."

threadreaderapp.com/thread/190

#MEcfs #chronicillness #Spoonies @mecfs @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

miss m Profile picture miss m @FatiguedStill 14h • 15 tweets • 2 min read • Read on X Last night I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME and long Covid 🧵 People with ME and long Covid will only receive points for cooking, washing and dressing. It's unlikely we'll receive points in any other activity. Few applicants will be awarded points for eating and drinking. It's viewed that if you can grip cutlery, no matter how much pain you're in or how long it takes you to eat, then you are independent. Only applicants with eating disorders or a paralytic hand will be awarded points.
Public
Barbara Wimmer - shroombab

Ich weiß, dass nahezu alle Menschen da draußen ihr "normales" Leben wieder aufgenommen haben. Dass ihr da draußen lacht, weint, was trinkt, euch verabredet, bastelt, lötet, oder einfach Spaß habt.

Ich fühl mich wirklich gefangen in meiner Wohnung, die ich nur gegen einen schlimmen Preis (... starke Schmerzen & Symptome) verlassen kann und gefangen in meinem Körper. An meinem Leben ist nichts mehr wie früher.

Damit hab ich sehr zu kämpfen.

#PostCovid#MCAS#POTS
Public
LemLems

My ‘you’re nearly 50’ health MOT has turned up high cholesterol so my GP wants me to try to bring it down with dietary changes. Between only having access to a microwave & toaster (and zero food prep space), my diet requirements for managing my #POTS, trying to up my protein intake due to #perimenopause, the fact that often I struggle to make myself eat at all and the limitations of my #ActuallyAutistic safe foods this is a bit of a ‘mare.

But we do what we must

Public *
Omega_Scribet

'Steeds meer huisartsen schrijven off-label naltrexon bij postcovidpatienten voor’

"lage dosis naltrexon van maximaal 5 mg per dag, een middel dat off-label al langer gebruikt bij onder meer ME/chronisch vermoeidheidsyndroom (cvs). Achterliggende hypothese is dat deze lage dosering leidt tot pijnvermindering en een anti-inflammatoir effect. "

"Naltrexon in hoge dosering (25mg) is geregistreerd voor alcohol- en opioidenverslaving, doordat het de werking van morfine blokkeert."

"het opbouwschema van naltrexon op haar Instagram account gezet"

"Daarnaast zijn er nog andere (niet-)medicamenteuze stappen die je als huisarts kunt zetten, zoals nagaan of de pacing goed wordt uitgevoerd. En bij posturaal orthostatisch tachycardiesyndroom (POTS) drie liter water per dag en zout adviseren, en eventueel een steunpanty.’"

medischcontact.nl/actueel/laat

www.medischcontact.nl‘Steeds meer huisartsen schrijven offlabel naltrexon bij postcovidpatienten voor’Huisartsen schrijven postcovidpatiënten met postexertionele malaise (PEM) steeds vaker, off-label, een lage dosering naltrexon voor. Dat vertelden Jojanneke Kant en longarts Merel Hellemons (ErasmusMC, onder meer werkzaam bij postcovidkliniek) op het recent gehouden ‘long covid symposium’.
#gezondheid#LongCovid#PostCovid
Public
N95Bias Ⓥ🏴‍☠️

“We’ve suspected for several years now that there is an association between COVID and POTS. I’m seeing this in my own clinic. My waiting list is longer than it has ever been,” said Dr. Blair Grubb, a UToledo Health cardiologist who has treated and studied POTS for more than three decades. “Now we have the data to back that up. This study helps give validity and voice to these patients, and it gives us a treatable target.”

news.utoledo.edu/index.php/03_

UToledo News | The University of Toledo News · COVID-19 Brought About a Large Rise in POTS Cases | UToledo NewsA UToledo study has found a five-fold increase in the number of newly identified postural orthostatic tachycardia syndrome patients post COVID.
#covid#covid19#SARSCoV2
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