Hey, just a friendly reminder that it’s totally ok to have a chair in the kitchen and sit down while you cook. Whatever you need to make you
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Hey, just a friendly reminder that it’s totally ok to have a chair in the kitchen and sit down while you cook. Whatever you need to make you

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Something really unexpected happened early this month before the fires. In September I had asked my NP if I could get her to prescribe a rollator for me, as the one I got out of the junk warehouse was in bad shape. I was all ready with my “because let’s face it, even if I build up my strength I’ll still be that person who has to sit on the sidewalk or on store floors at any given time because orthostatic intolerance sucks” but she was already printing the paperwork! She told me I’d be contacted by the company to answer some questions, but I never was. Instead, less than a month later I got a phone call from a delivery service saying they’d be by in a few hours. They arrived early. I signed a tablet. They left. I adjusted the rollator myself (it was set up for someone roughly 50% taller than me). And now I have a rollator with working breaks and a seat that isn’t peeling and handles that don’t fall off when I’m taking it out of my car. It cost me the same as my dumpster dived one: $0. You can always ask your doctor if you think you would benefit from a mobility aid. Or you could be like me and scope out creepy warehouses for one and hope for the best. You don’t need permission. You don’t need to use it 24/7. Just ask. #chronicillness #chronicallyill #chronicpain #chronicfatigue #pots #posturalorthostatictachycardiasyndrome #orthostaticintolerance #agoraphobia #rollator #walker #mobilityaid #disabled #disabledlife #thatactuallyworkedwell #pleasantlysurprised
Interesting study & technology.
Hopefully it becomes widely available for clinical practice.
Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report
lmonary exercise testing (CPET). Methods: One individual with ME and 1 nondisabled individual underwent a 2-day CPET to induce PEM. Bl
BYO = Bring Your Own
The Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with a Normal Heart Rate and Blood Pressure Response During a Tilt Test
https://www.mdpi.com/2227-9032/12/24/2566
Screenshot from the AMMES May email newsletter
--- Somebody wrote this summary for laypeople when I shared it on Facebook: Summary - 91% of people with ME/CFS had insufficient heart output and hence insufficient blood flow to the brain despite normal heart rate and blood pressure during a tilt test. Ie even though they may not meet criteria for POTS 91% of ME/CFS sufferes have reduced blood flow to brain when body changes position.

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"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS]
“The tilt table test is likely to be contraindicated in people with severe ME/CFS and related conditions,” Harvey said. Studies show about h
Contains quotes from patients and also some experts in the field
STOP shaming people for sitting down at concerts. It doesn’t mean they’re not having fun, they might have a disability! Let’s normalize mind
"Pacing Upright Activity" from Bateman Horne Center