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**Tom Kindlon** @tomkindlon@disabled.social · 4h

Tom Kindlon @tomkindlon@disabled.social

"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS] in @thesicktimes

https://thesicktimes.org/2025/04/08/its-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/

Contains quotes from patients and also some experts in the field

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

Key points you should know:

The tilt table test (TTT), commonly given to diagnose postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia, can be dangerous for some people with Long COVID, especially those who experience post-exertional malaise (PEM).

It is well-known that the TTT can provoke fainting and even a temporarily stopped heart, but the medical literature doesn’t reflect how many patients can experience debilitating PEM after the exam.

Alternative tests, including the NASA lean test and active stand test, are becoming more commonly used because of their safety and accessibility, though there are debates about whether they are as reliable as the TTT.

Clinicians also debate whether the POTS diagnostic criteria are too strict in terms of determining who should be treated.

For patients who have no choice but to have a TTT, there are methods for mitigating the possible harm, including saline infusions and ample rest and recovery before and after.

**Tom Kindlon** @tomkindlon@disabled.social · Apr 2

Apr 2

Tom Kindlon @tomkindlon@disabled.social

(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 ..."

https://threadreaderapp.com/thread/1907029145986421125.html

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

**Tom Kindlon** @tomkindlon@disabled.social · Mar 24

Mar 24

Tom Kindlon @tomkindlon@disabled.social

"Showering: self-care or self-sabotage?" short blog post by a woman with #POTS and ME.
https://chronicallycraptastic.com/showering-self-care-or-self-sabotage/

"It sounds counterintuitive, but it pans out for people with ME/POTS, sometimes NOT showering is a form of self-care"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots

Photo of the face of a woman whose hair is in the towel following a shower
Showering: self-care or self-sabotage?

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

From Thailand:

Comparison of the head-up tilt test and the 10-minute NASA lean test for assessing blood pressure and heart rate responses in young individuals with postacute COVID-19 syndrome

https://journals.lww.com/bpmonitoring/abstract/9900/comparison_of_the_head_up_tilt_test_and_the.147.aspx

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance

**Tom Kindlon** @tomkindlon@disabled.social · Mar 13

Mar 13

Tom Kindlon @tomkindlon@disabled.social

Tragus Nerve Stimulation Attenuates Postural Orthostatic Tachycardia Syndrome in Post COVID-19 Infection

https://onlinelibrary.wiley.com/doi/full/10.1002/clc.70110

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots

Clinical Cardiology
Tragus Nerve Stimulation Attenuates Postural Orthostatic Tachycardia Syndrome in Post COVID-19 Infection — Zhuo Wang et al.
"low-level tragus stimulation significantly attenuated the increase in heart rate from supine to a 10-min stand, as well as the average and maximum heart rates after 1 month of treatment." "effects persisted during the 1-year follow-up."

**Tom Kindlon** @tomkindlon@disabled.social · Feb 3

Feb 3

Tom Kindlon @tomkindlon@disabled.social

New review by US authors

Cerebral Blood Flow in Orthostatic Intolerance

https://www.ahajournals.org/doi/10.1161/JAHA.124.036752

Has subsections on ME/CFS & long Covid

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance #dysautonomia @dysautonomia

Figure 4. Methods for CBF measurement.
Ultrasound is used to assess blood flow velocity to the head either at the middle cerebral artery using TCD ultrasound or at the external carotid artery via extracranial ultrasound. NIRS supplies an index of oxygen saturation of the frontal lobe with oximetry by shining near‐infrared light at the forehead. In‐ear pulse‐wave analysis is an emerging technique to remotely measure blood flow to the head using infrared light to the posterior auricular branch of the external carotid artery. CBF indicates cerebral blood flow; NIRS, near‐infrared spectroscopy; and TCD, transcranial Doppler.

**Tom Kindlon** @tomkindlon@disabled.social · Jan 10

Jan 10

Tom Kindlon @tomkindlon@disabled.social

Support Group Recap: Romantic Relationships and Chronic Illness (October 8, 2024)

https://batemanhornecenter.org/wp-content/uploads/2024/11/20241008-Support-Group-Recap.pdf

#MEcfs #LongCovid @chronicillness
@spoonies
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #IBS @ibs #dysautonomia @dysautonomia @longcovid @mecfs

**Tom Kindlon** @tomkindlon@disabled.social · Dec 22, 2024

Dec 22, 2024

Tom Kindlon @tomkindlon@disabled.social

Support Group Recap: Facing the Holidays with Chronic Illness (December 17, 2004)

https://batemanhornecenter.org/wp-content/uploads/2024/12/20241217-Support-Group-Recap.pdf

#MEcfs #LongCovid #chronicillness #chroniclife #ChronicPain #Spoonielife @chronicillness
@spoonies
@longcovid
@mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #Fibrositis #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

**Tom Kindlon** @tomkindlon@disabled.social · Dec 19, 2024

Dec 19, 2024

Tom Kindlon @tomkindlon@disabled.social

"Orthostatic Intolerance Overview" (for doctors) (Bateman Horne Center)

https://batemanhornecenter.org/wp-content/uploads/2024/09/Orthostatic-Intolerance-Overview-240911.pdf

#PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI #OrthostaticIntolerance @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC

Orthostatic Intolerance Overview
Orthostatic Intolerance (OI) is characterized by symptoms of autonomic dysfunction triggered by or worsened by upright positioning and improved in supine positioning. Several conditions fall under this broad term, including but not limited to postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, orthostatic hypotension, and inappropriate sinus tachycardia.
Evaluation often includes the following:
- Passive standing (NASA Lean) test
- Electrocardiogram (EKG)
- Echocardiogram
- Event monitor
- Complete blood count (CBC)
- Electrolyte levels
- Thyroid function tests
- Morning cortisol levels (AM cortisol)
- Adrenocorticotropic hormone (ACTH) levels
- Comprehensive history and a thorough physical examination

You may consider a referral to cardiology or autonomic neurology (if available) based on the severity of a patient’s symptoms or consult occupational therapy (OT) to recommend restorative or adaptive therapy to help improve quality of life.

**Tom Kindlon** @tomkindlon@disabled.social · Nov 18, 2024

Nov 18, 2024

Tom Kindlon @tomkindlon@disabled.social

Blood Pressure Regulation in Post–COVID POTS: Beyond Sinus Tachycardia

https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.124.23670

Image is screenshot from Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots

Hypertension
Blood Pressure Regulation in Post–COVID POTS: Beyond Sinus Tachycardia — Madeleine Johansson et al.
"In our study, post–COVID-19 POTS exhibited a higher frequency of hypotensive tendency (or susceptibility) during daytime, with a higher number of SBP drops <80, <90, and <100 mm Hg compared with population-based controls. The change in SBP between daytime and nighttime was also markedly reduced in patients with post–COVID-19 POTS versus controls, suggesting underlying impairment in autonomic regulation."

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Nov 1, 2024

Nov 1, 2024

Tom Kindlon @tomkindlon@disabled.social

‪2/‬

‪Long Covid symptoms often include debilitating fatigue, and many people found to have it have also been diagnosed with conditions like #myalgicencephalomyelitis / #chronicfatiguesyndrome and #posturalorthostatictachycardiasyndrome ”‬

‪#LongCovid #MEcfs #POTS‬
@longcovid @covid19 @mecfs @pots

**Tom Kindlon** @tomkindlon@disabled.social · Oct 31, 2024

Oct 31, 2024

Tom Kindlon @tomkindlon@disabled.social

ME Research UK:

Oct 25 is PoTS Awareness Day. Read more about the condition and its relationship to ME/CFS on our website:
https://www.meresearch.org.uk/potsandmecfs/

#pots #posturalorthostatictachycardiasyndrome #potsawareness #potsawarenessday #mecfs #pwme @pots