Merson the Person · @Dynamicallydisabled
747 followers · 931 posts · Server spore.socialWildfires and med changes meant today was one of the most Sideways Days I have had in a while. Out of context a Sideways Day might sound fun, but anyone with #longcovid #mecfs #pots #orthostaticintolerance would tell you otherwise.
#longcovid #mecfs #pots #orthostaticintolerance
Tom Kindlon · @tomkindlon
740 followers · 1863 posts · Server disabled.social
"High proportions of post-exertional malaise and orthostatic intolerance in people living with #postCOVID19 condition: the PRIME post-COVID study"
Free fulltext:
https://www.medrxiv.org/content/10.1101/2023.08.17.23294204v1
"Exercise-based treatments can be harmful in people who were SARS-CoV-2 positive and
living with post-COVID-19 condition (PL-PCC) and who have #PostExertionalMalaise
(#PEM) or #orthostaticintolerance intolerance (#OI)"
#LongCovid #PwLC @longcovid @covid @covid19 #PostCovidSyndrome #postcovid #COVID19 #COVID
#PostCovid19 #postexertionalmalaise #PEM #orthostaticintolerance #oi #LongCovid #pwlc #postcovidsyndrome #PostCovid #COVID19 #covid
Tom Kindlon · @tomkindlon
701 followers · 1712 posts · Server disabled.social
Book I just came across: "Horizontal #Parenting: How to Entertain Your Kid While Lying Down"
Could be useful for #parents with conditions causing #orthostaticintolerance (intolerance to being upright)
Some reviews
https://www.mamasfacingforward.com/2022/12/03/book-review-horizontal-parenting-how-to-entertain-your-kid-while-lying-down/
https://www.amazon.co.uk/Horizontal-Parenting-Entertain-While-Lying/dp/179721134X
@mecfs @spoonies @parenting #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #chronicillness
#chroniclife #Spoonielife
#hiddenillness #invisibleillness #pots @pots @chronicillness
#parenting #parents #orthostaticintolerance #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #chronicillness #chroniclife #spoonielife #hiddenillness #InvisibleIllness #pots
ahimsa · @ahimsa_pdx
876 followers · 8600 posts · Server disabled.social@andrewdessler A message for that Washington Post headline writer:
Maybe "your" body can build up a tolerance to heat, but "my" body cannot!
Image description: Headline in the "Climate Solutions" section(!) that says, "Your body can build up a tolerance to heat. Here's how."
#alttext4you #Dysautonomia #pots #orthostaticintolerance
ahimsa · @ahimsa_pdx
876 followers · 8600 posts · Server disabled.social
A recording of this webinar is now available on YouTube:
https://www.youtube.com/watch?v=_9cujWQgi5g
#Dysautonomia #POTS #MEcfs #LongCovid #ChronicIllness #OrthostaticIntolerance
#Dysautonomia #pots #mecfs #LongCovid #chronicillness #orthostaticintolerance
ahimsa · @ahimsa_pdx
861 followers · 8415 posts · Server disabled.socialScheduled for tomorrow!
Solve M.E. webinar: "The Future of Symptom Tracking"
STAT Health CEO Daniel Lee will discuss an in-ear device that "measures blood flow to the head [and] tracks changes in heart rate and blood pressure trend when users stand up."
Tuesday, July 25, 2-3 PM Pacific Time
#Dysautonomia #POTS #MEcfs #LongCovid #ChronicIllness #OrthostaticIntolerance
#Dysautonomia #pots #mecfs #LongCovid #chronicillness #orthostaticintolerance
ahimsa · @ahimsa_pdx
818 followers · 7806 posts · Server disabled.social
Preprint: "High incidence of autonomic dysfunction and postural orthostatic tachycardia syndrome in patients with long-COVID: Implications for management and healthcare planning"
"The majority (79%) of those with PASC met the internationally established
criteria for POTS"
"Autonomic testing should
be routinely undertaken in those with PASC [Long Covid] …"
https://www.amjmed.com/article/S0002-9343(23)00402-3/pdf
#COVID #LongCovid #PASC #POTS #Dysautonomia #OrthostaticIntolerance
#covid #LongCovid #PASC #pots #Dysautonomia #orthostaticintolerance
Tom Kindlon · @tomkindlon
635 followers · 1352 posts · Server disabled.social
From Germany:
'Cognitive functioning in postural orthostatic tachycardia syndrome among different body positions: a prospective pilot study (POTSKog study)'
https://link.springer.com/article/10.1007/s10286-023-00950-0
"Patients with #PoTS had impaired attention (TAP median reaction time) in the seated position and impaired executive functioning (Stroop) while standing compared with HC [healthy controls]"
#PosturalOrthostaticTachycardiaSyndrome @pots #OrthostaticIntolerance
#pots #PosturalOrthostaticTachycardiaSyndrome #orthostaticintolerance
ahimsa · @ahimsa_pdx
786 followers · 7436 posts · Server disabled.social
Here are two videos on orthostatic intolerance. They're meant for ME/CFS patients but a lot of the information will probably apply to Long Covid patients who also have some form of dysautonomia (like POTS = Postural Orthostatic Tachycardia Syndrome or NMH = Neurally Mediated Hypotension)
Part 1: Diagnostic Workup
https://www.youtube.com/watch?v=X3Ym8rnYk_4
Part 2: Management
https://www.youtube.com/watch?v=GIkS4w3tIg8
#LongCovid #MEcfs #OrthostaticIntolerance #POTS #Dysautonomia
#LongCovid #mecfs #orthostaticintolerance #pots #Dysautonomia
ahimsa · @ahimsa_pdx
753 followers · 7308 posts · Server disabled.social
"This isn’t an AirPod — it’s a wearable unlike any I’ve seen before "
#StatHealth #Hypoperfusion #Dysautonomia #POTS #MECFS #LongCovid #OrthostaticIntolerance #Wearable
#stathealth #hypoperfusion #Dysautonomia #pots #mecfs #LongCovid #orthostaticintolerance #wearable
ahimsa · @ahimsa_pdx
753 followers · 7307 posts · Server disabled.social
From #BatemanHorne Center:
"Brain Fog in ME/CFS and Long COVID"
"We believe that the closer to onset we study ME/CFS, the more likely we are to identify possible pathways that are causing the symptom(s) that can be targeted with treatment"
https://batemanhornecenter.org/brain-fog-in-me-cfs-and-long-covid/
#LongCovid #MEcfs #Dysautonomia #OrthostaticIntolerance #BrainFog #Research #NIH
#batemanhorne #LongCovid #mecfs #Dysautonomia #orthostaticintolerance #brainfog #research #nih
ahimsa · @ahimsa_pdx
708 followers · 6473 posts · Server disabled.social@karlpybara Does salt count as natural? 😉
More seriously, I take salt tablets and drink electrolyte mixes (either homemade or Normalyte) due to orthostatic intolerance which is common in ME/CFS.
#mecfs #Dysautonomia #orthostaticintolerance #pots
Tom Kindlon · @tomkindlon
584 followers · 1116 posts · Server disabled.socialDetecting #OrthostaticIntolerance in #LongCOVID in a Clinic Setting
“This…study found evidence of OI patients with LC, with impact on daily functioning. The [Nasa Lean Test] can be used to detect OI in a clinic setting. We would recommend using this test for all patients with LC & not just patients with classical OI symptoms, due to the high prevalence of OI in LC”
#orthostaticintolerance #LongCovid #PostCovid #PostCovid19 #dysautnomia #pots
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
The recent tube feeding case shows more needs to be done to highlight the importance of orthostatic intolerance in ME/#CFS. Patients lie down (or sit down) because they have to. This research team has published important research in area a lot of which is summarised in this.
Slides can be downloaded here:
https://dropbox.com/s/4pex9ivjnqsy0m2/Prod%20Visser%20Presentation%20PDF.pdf?dl=0
or
https://mediafire.com/file/6f580rpwvzrd4ms/Prod+Visser+Presentation+PDF.pdf/file
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #OI #POTS #Dysautonomia #OrthostaticIntolerance
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #pwme #oi #pots #Dysautonomia #orthostaticintolerance
Anna · @halcionandon
454 followers · 1011 posts · Server aus.socialAre there any #doctors #specialists #GPs in #Melbourne giving IV or IV push #Hartmanns with #MagnesiumSulphate? For #POTS #Dysautonomia #OrthostaticIntolerance #ChronicPain, and #Migraine that’s becoming intractable.
HAVE REFERRAL! Totally legal.
But doctors hate giving them. I used to get in migraine clinic until funding dried up. IV drip clinics don’t do it at all or only do if doctors jump through hoops (referral writer GP won’t). Very expensive too. I’m stuck.
Cannot absorb #magnesium much unless IV and leech #potassium. Will feel very sick until eventually… Most docs don’t get it.
Any #nurses willing to administer this? It can improve functionality to 50% but nobody will give it anymore and I’m stuck in bed for no reason.
Can I have my life back please 😩?
Please #boost it shouldn’t be so hard to get #medical help.
#MedMastodon
#pwME #MECFS
#SevereME
#LongCovid #Neisvoid
@LongCovid
@ChronicIllness
@migrainechat @chronicpain @dysautonomia
@migrainechatgroup
@LCNMUK
@Melbourne
#doctors #specialists #gps #melbourne #hartmanns #magnesiumsulphate #pots #dysautonomia #orthostaticintolerance #chronicpain #migraine #magnesium #potassium #nurses #boost #medical #MedMastodon #pwme #mecfs #SevereME #LongCovid #NEISvoid
Anna · @halcionandon
37 followers · 60 posts · Server disabled.socialIf I don’t get proper treatments soon this is going to kill me.
I need a proper doctor. Fluids. Proper meds and treatment.
Reaching out while still can.
#SevereME #pwme #mecfs #AdrenalDisease #neisvoid #pots #dysautonomia #migraine #orthostaticIntolerance
#LongCovid
#LongCovid #SevereME #pwme #mecfs #adrenaldisease #NEISvoid #pots #Dysautonomia #Migraine #orthostaticintolerance
Anna · @halcionandon
455 followers · 991 posts · Server aus.socialIf I don’t get proper treatments soon this is going to kill me.
I need a proper doctor. Fluids. Proper meds and treatment.
Reaching out while still can.
Remove stress.
#SevereME #pwme #mecfs #AdrenalDisease #neisvoid #pots #dysautonomia #orthostaticIntolerance
#SevereME #pwme #mecfs #adrenaldisease #NEISvoid #pots #dysautonomia #orthostaticintolerance
Anna · @halcionandon
455 followers · 985 posts · Server aus.socialAre there any #doctors #specialists #GPs in #Melbourne giving IV or IV push #Hartmanns with #MagnesiumSulphate? For #POTS #Dysautonomia #OrthostaticIntolerance #ChronicPain. #Migraines becoming intractable.
Any #nurses willing to administer this? It can improve functionality to 50% but nobody will give it anymore and I’m stuck in bed for no reason.
Can I have my life back please 😩?
Please #boost it shouldn’t be so hard to get #medical help.
#MedMastodon
#pwME #MECFS
#SevereME
#LongCovid
@chronicillness @mecfs @migrainechat @chronicpain @dysclinic @migrainechatgroup
#doctors #specialists #gps #melbourne #hartmanns #magnesiumsulphate #pots #dysautonomia #orthostaticintolerance #chronicpain #migraines #nurses #boost #medical #MedMastodon #pwme #mecfs #SevereME #LongCovid
Anna · @halcionandon
37 followers · 60 posts · Server disabled.social👋🏻 #boost please
Any #doctors #GPs in #Melbourne giving IV or IV push #Hartmanns with #MagnesiumSulphate? For #POTS #Dysautonomia #OrthostaticIntolerance #ChronicPain. #Migraine becoming intractable.
Have referral.
Any #nurse volunteer to give this? Can improve functionality to 50% but nobody does it anymore so I’m stuck in bed for no reason.
Can I have my life back😩?
#MedMastodon
#pwME #disability
#SevereME
#LongCovid
#MECFS
#ChronicIllness
@chronicillness @mecfs @migrainechat @chronicpain
#boost #Migraine #mecfs #doctors #gps #melbourne #hartmanns #magnesiumsulphate #pots #Dysautonomia #orthostaticintolerance #MedMastodon #pwme #SevereME #LongCovid #chronicpain #Nurse #disability #chronicillness
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
Attached are the diagnostic criteria for #PosturalOrthostaticTachycardiaSyndrome (#POTS). Discussed at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8920526/
Notice how they require an absence of a (particular) blood pressure drop. I think some are unaware of this criterion
#OrthostaticIntolerance #OI #Dysautonomia @pots #orthostatichypotension
#PosturalOrthostaticTachycardiaSyndrome #pots #orthostaticintolerance #oi #Dysautonomia #orthostatichypotension