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#Dysautonomia

3 posts3 participants0 posts today
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Public
J.

Interesting therapy session today. My therapist knows that I haven't felt good and about my symptoms. Today she asked me if I had done any research into what I'm going through and I told her that what really stood out was #dysautonomia.

She said that as soon as I had started talking about my symptoms last week, dysautonomia had crossed her mind because she has four other current clients who are experiencing the same things. This is interesting just in itself. We all have histories of longstanding #trauma and #anxiety. This absolutely feels connected to my anxiety, even if only that it's being exacerbated by it.

I asked if her other clients had been diagnosed and she said that they had and that the first thing that their doctors had done was the same mine did—to first have us wear a heart monitor. This information feels like it added a bit of hope…

I go to the doctor on Monday.

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.
Public
J.

Been really unwell since Friday. Or, rather, my already questionable heath kicked it up a notch.

Went to the ER because my blood pressure dropped low enough to lose my peripheral vision. The diagnosis the ER doctor gave me was that it was dehydration which was not helpful and didn’t explain much of anything at all. If I was dehydrated at that time, I’m definitely not chronically so.

I’ve been experiencing a lot of symptoms mostly on and off for almost a year. Now some of them are running completely rampant. I’ve been looking at symptom lists all weekend and the one thing that fits best and includes almost every single thing is #dysautonomia. The only items that it leaves off are a couple of symptoms that can be very reasonably explained by other things.

And I read too that dysautonomia is possibly more common in autistic individuals. #actuallyautistic

Continued thread
Public *
Anna

In case it was missed in the post above, this is my updated article:

👉 thecanary.co/global/world-anal

My doctor predicts I will die if I don’t leave soon.

I need a solid, safe, home I can go to and recover to at least a stable baseline. It’s not full recovery, but it’s better than a slow death.

Help please 🙏

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath #MCAS #MCAD #Endometriosis #ChronicPain #CostOfLivingCrisis #Melbourne #Australia #DomesticAbuse #DV

@chronicillness @longcovid @neisvoid
@disabilityjustice
@disability @socialwork
@dysautonomia @mutualaid
@mecfs
@chronicpain
@mcas
@australia
@melbourne

Canary · Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuseNearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse from Canary on 1 April 2025
Public *
Anna

PLEASE HELP ME ESCAPE!

Please #boost and share to other platforms.🙏I don’t have energy left (see below).

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

👉Last year:
thecanary.co/global/world-anal

Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.

If not mentioned in the article, my father is a diagnosed #narcissist with #psychopathic & #antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of #illness.

👉A year later:
thecanary.co/global/world-anal

I’ve tried every level of government, every service and they simply won’t help.

Are able help? Please ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small rent)? A lot people have ‘big house, not enough money’ problem. I can help!

Is anybody an #advocate? I desperately need help.

I would be incredibly grateful for any help beyond words.🙏

Please read articles for full information.

Thank you for reading.

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath

Woman bed in a very dark room with ear defenders and light block glasses.
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Public
Tom Kindlon

8/
“I think it’s important for clinicians of all specialties to get educated on how to recognize, diagnose, & manage patients with ME/CFS, long COVID, and dysautonomia because there are simply not enough specialists to absorb a rising number of these patients. The first step is to understand & acknowledge that these disorders are not psychologically based & are not functional in etiology”

@mecfs @longcovid @dysautonomia #mecfs #longcovid #Dysautonomia

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