LongWaiter

I'm entertained. Typos b/c of cognitive dysfunction. #MyalgicEncephalomyelitis & #POTS since 2009.

[LongWaiter @LongWaitME]

@sunsopeningband A travesty if that pasta was imported from Italy!

[LongWaiter @LongWaitME]

@sunsopeningband Great post. FWIW - My POTS symptoms used to be daily for years. I'm a rapamycin responder. Now POTS triggers during crashes. Crashes are less frequent but last a minimum 3 days hard with a week+ to return to baseline. Can still trigger POTS outside of PEM but less frequent.

[LongWaiter @LongWaitME]

@chydorina As a rapamycin responder, it's time for research to identify what mechanisms are contributing b/c we are not the same even if we appear similar in clinic.

[LongWaiter @LongWaitME]

@sunsopeningband Yeah, the crypto statement is the part that makes it most sus. Still, I hope the she's is in a position to purchase a Porsche!

[LongWaiter @LongWaitME]

@jmasseypoet That link didn't seem to open to the series despite the thumbnail. Here it is on YouTube: https://t.co/fSxFn2WIPb

[LongWaiter @LongWaitME]

@jmasseypoet "Toxic Academia" covers all of the likes in your post: https://t.co/94fd5D90N5

[LongWaiter @LongWaitME]

@Davemconte Derya Unutmaz, MD, from the Jax Lab, is a huge proponent of AI in research and has been active in ME research for years. https://t.co/cuFU7tOuQK

[LongWaiter @LongWaitME]

@hopppernickle Yes...seeing in my visit summary surprised me as the term seemed antiquated at the time but all the interventions that have helped my condition more globally over time target immune function, and yet so far not auto-immune despite SX overlap.

[LongWaiter @LongWaitME]

@pausedME Been doing great lately but in 4th day of a crash...it's insane when the SXs surge. No one who hasn't experienced can understand, they don't even use the right words. PEM is a process and it must be understood so it can be treated and prevented.

[LongWaiter @LongWaitME]

@BrianEntin 💎

[LongWaiter @LongWaitME]

@CaroleBruce17 The hypothesis he's pushing is anchored in Brian Walitt's effort preference rhetoric. This looks like an effect, not a driver.

[LongWaiter @LongWaitME]

@sunsopeningband This post makes me shudder remembering grad school days.

[LongWaiter @LongWaitME]

@Ramyisback This is a good angle for advocacy groups...focus on pushing one drug that has made a significant difference for patients. That's headline-making and can drive a new narrative about treatment for ME. I can't believe the alternative is allowing patients to die by euthanasia.

[LongWaiter @LongWaitME]

@KsiZegulite @OrevaZSN Nothing finer than homegrown okra!

[LongWaiter @LongWaitME]

@cerebralcontext @dsowens17 💯 - The premise is based on humans on the aggregate being able to adapt to this much environmental change this fast. Different stages of development, different stages of security; they are fundamental to how well an individual copes and many are not positioned.

[LongWaiter @LongWaitME]

@ggottschalkPhD @RedefiningMECFS @SpringerNature @ProfAvikRoy Thank you for this study. I'm a responder and so any research helps in understanding.

[LongWaiter @LongWaitME]

@hassankhaderali We don't live in that world. People with power select which and whose suffering will be amplified for their political purposes, not actual human need. There are beautiful people in the world trying to help, but they are rarely the type that are in power or seek power.

[LongWaiter @LongWaitME]

@DrMcFillin Naw, the problem is drugs don't actually make people feel better, they do as you say "blunt"...plus side effects. There is nothing noble about suffering, no reward at the end of the day. People need help, not a scout badge for what they've endured. Community isn't coming back.

[LongWaiter @LongWaitME]

@marinaflares Sort of negates the "myalgia" part that seems to have faded since it's not even a diagnostic requirement and yet remains a huge component for many of us. Many orgs emphasize the arts in a way that frames ME through an aesthetic I cannot relate to and doesn't represent me/ME.