Megan Syverson

[Megan Syverson @MeganSyverson]

@SolidEvidence Possibly the timing of CWD samples collected statewide, processed in Poynette, and tested/disposed of in Madison?

[Megan Syverson @MeganSyverson]

@dysclinic Timely information for me, a POTS patient who started HRT this month! I will share your paper with my doctor, thank you!

[Megan Syverson @MeganSyverson]

@cfs_research @UFBB @diannahaze No trials yet, unfortunately. But this article places his approach within the context of other recent research (all of which is beyond my ability to evaluate): https://t.co/yj05ZzfO82

[Megan Syverson @MeganSyverson]

@diannahaze I would be interested in the opinion of the specialists you've seen. At the very least, this approach has provided structure and logic to pacing when nothing else was available to me. https://t.co/ReLK91Z5gG

[Megan Syverson @MeganSyverson]

@diannahaze An approach based on work of a German electrophysiologist, Dr Perikles Simon with long COVID and ME/CFS patients. Theory is that PEM results from our faulty aerobic metabolism, but muscle use >30 sec is too short to trigger it. I'll find links.

[Megan Syverson @MeganSyverson]

@UFBB @diannahaze That's it! That post also links to this one: https://t.co/ReLK91ZD6e

Almost everything else I have found is in German or refers to the same resources summarized/linked by this Reddit user.

[Dysautonomia Intl. @Dysautonomia]

Dysautonomia is sometimes minimized, as if it's just lightheadedness and fainting, but the autonomic nervous system regulates almost everything. When it isn't working properly, people can develop a very long list of symptoms and organ complications. #DysautonomiaAwarenessMonth

[Megan Syverson @MeganSyverson]

@diannahaze I'm so sorry that you're back in this space. A friend and I call it MEisery, a state unlike anything either of us had experienced prior to this illness. Thinking of you, hoping it starts to lift.

[Megan Syverson @MeganSyverson]

@SolidEvidence @Ing30m Maybe the time in the city reflects two hospital stays by a rural resident, sick enough to be in town for medical care.

[Megan Syverson @MeganSyverson]

@diannahaze It's a perspective I needed to embrace today, too. <3 So I appreciate you giving me the opportunity to summon it. We can do this. We are doing it.

[Megan Syverson @MeganSyverson]

@diannahaze It's exhausting to keep reorienting toward the positive. But absent any certainty about the future, "I can do it again" is at least as plausible as "I can't" and for that reason, worth choosing over again over again.

[Megan Syverson @MeganSyverson]

@diannahaze It is delightful, and I'm thrilled for you! I know how satisfying this must feel. I was able to start needle-felting again this fall after it being too much exertion for most of 2024. We're clawing our way back, bit by bit!

[Megan Syverson @MeganSyverson]

@mellohead @SteB777 Came here to say this. Biggest pertussis/whooping cough outbreak in years. Long incubation, lingering severe cough. Started for us with runny nose/cold symptoms. Get tested! Very dangerous for babies and antibiotics reduce transmissibility.

[Megan Syverson @MeganSyverson]

@diannahaze Of course you feel grief. What you've lost is real and huge. In my own, milder illness, the grief came pouring over me just as I had started to improve--finally had the mental energy to process it but saw how far I had yet to go. Sending love.

[Megan Syverson @MeganSyverson]

@DrRebeccaRyan @Riemerville Fascinating, so many factors. I had been waking every 30-60min w/tachycardia, all night, every night, for months, & no sleep meds helped. Then tried Clonidine ER at night--magic. I still get HR spikes, but much lower--and they don't wake me as often. I have #POTS and #ME/CFS

[Megan Syverson @MeganSyverson]

@DrRebeccaRyan @Riemerville Dr. Ryan, thank you, I'll look into that. If so, is it possible the clonidine is also helping through its side effect of inhibiting insulin secretion?

[Megan Syverson @MeganSyverson]

@Riemerville @DrRebeccaRyan It's used to reduce norepinephrine in ppl with hyperadrenergic POTS (when blood pressure increases on standing). Can also prevent tachycardic episodes that interrupt sleep, which helps me a lot.

[Megan Syverson @MeganSyverson]

@Riemerville @DrRebeccaRyan Lots of medication options: midodrine, beta blockers, ivabradine, pyridostigmine, clonidine, and more. Many patients take a combination.
https://t.co/2eKdgv1Tk1

[Megan Syverson @MeganSyverson]

@sarahslowsdown @diannahaze @jenbrea @sarahslowsdown thank you for sharing that thread. I'm reading this at exactly the right time in my life to take Jen's words fully to heart.