MEhemann
New #instance - new #introduction. I've been at #twitter and at mastodon.lol to find #pwME or allies, because my wife is sick with #mecfs for years now - so I am of course searching for ways to improve her health and her everyday life. If you are on the same quest, let's connect and help each other.
Feb 12, 2023 at 1:18pmWeb
Show threadRebecca WegerFeb 13, 2023

@MEhemann Many of us have spent a lot of time and money chasing cures that don't yet exist.

So we focus on what can help more reliably, rest, limiting energy use, pacing. Getting the help and support we need. Educating others as we're able.
And supporting the researchers who are working their butts off looking for answers.

Wishing your wife good rest and more good days.

Show threadahimsaFeb 13, 2023

@MEhemann Sending love to you and your wife ❤️

If you haven't already looked into diagnosis and treatment for orthostatic intolerance / dysautonomia then these videos might be helpful:

Part 1:
https://www.youtube.com/watch?v=X3Ym8rnYk_4

Part 2:
https://www.youtube.com/watch?v=GIkS4w3tIg8

One comment is that the tilt table test is more sensitive than a standing test or NASA lean test - a case of neurally mediated hypotension might not be found without a tilt table test. But better to do those tests than no test at all.

What is Orthostatic Intolerance? Part 1- Diagnostic Workup

YouTube
Show threadMEhemannFeb 13, 2023
@ahimsa_pdx thank you so much. I'll check where we can make such a test