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#pots

5 posts5 participants1 post today
Public
Rebecca Esther (they/she)

#Spoonies: is it possible to sit with your legs crossed ("criss cross applesauce") on a rollator?

My OT has never heard that question before and said we can test the biggest rollator she can find next time I see her, but she doubts it.

I use a cane now (have for 10 years) and want the rollator so I can sit when my POTS flares.

Thank you for your input and expertise, friends! 💙🫂

#POTS#MobilityAid#pwME
Public
Heidi

My brain fog hit in the middle of square dancing tonight. My partner said, "Hey, where'd you go? You ok?" & I snapped out of it. Continued dancing & recalling just fine. For a few seconds I had no clue what the calls were. Wild. This is what I try to explain to my doctor when I say that things go off the rails but resolve relatively quickly. #POTS

I've been dancing with this particular gentleman since my 1st lesson. He said that I looked confused. I was. I had no clue what the calls were!

Continued thread
Public
Jeanine B. aus H.

Hinzu kommt das Tragen von #FFP2 Masken. Es sollte selbstverständlich sein, ist aber durch Desinformation und Framing 'verpöhnt', wenn man das so diplomatisch betiteln möchte.

Ich würde mich sehr freuen, wenn ihr meine Petition #HygieneNeuDenken chng.it/fFZ4YcTDxW unterschreibt und natürlich teilt ♥

Die Intention ist und bleibt weiterhin, Menschen vor gesundheitlichen Beeinträchtigungen und dauerhaften Behinderungen zu bewahren.

#LongCovid#PostCovid#PCS
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
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