LongWaiter

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

[LongWaiter @LongWaitME]

@DafoeWhitney I've lost a decade. Time and dates have no anchor. It's discombobulating.

[LongWaiter @LongWaitME]

@MarekSJF 💯 - Some doctors don't understand how out-of-touch they are with patients' realities. They bank on the diploma to give them license to feel superior. It's patronizing and they look like idiots, but the strategy must at least make them feel better about themselves. 🤷‍♀️

[LongWaiter @LongWaitME]

@AnilvanderZee Amazing to be surprised by basic humanity. This is beautiful, relatable, and a relief to see it's possible/actionable. God bless everyone compassionately caring for people with ME.

[LongWaiter @LongWaitME]

@JasonS1269 It's a good measure of function. I was bed bound but w/ improvements from rapamycin, I'm able to do some gardening & cooking. I still spend most of my day in bed, but do not consider myself bed-bound. I'm in bed b/c I'm pacing and cannot sustain activity, but am not locked down.

[LongWaiter @LongWaitME]

@finnishgunners It's great! He only missed the dying part as the alternative many nationalized healthcare systems offer patients b/c they refuse to adequately invest in helping them.

[LongWaiter @LongWaitME]

@Surgeon_General Thank you #MEcfs

[LongWaiter @LongWaitME]

@limpbroozkit Interesting. I have myalgic encephalomyelitis and have multiple relatives with multiple sclerosis. Not the same, but both neuro-immune. ALS must have an exposure component in some cases given the higher incidence rate with military personnel.

[LongWaiter @LongWaitME]

@limpbroozkit I hate this for you. People look at others and think it's someone else's life and not their problem, but it can happen to any of us. Sometimes there is no way to navigate a situation, only face it. Hugs to you, Brooke.

[LongWaiter @LongWaitME]

@WhatJayneSaw @mamboitaliano__ True in MANY respects, but his message on peace is solid.

[LongWaiter @LongWaitME]

@WhatJayneSaw @mamboitaliano__ It's not about Rome. The Pope speaks as a man and the leader of the Holy Roman Catholic Church. People are free to take his words as a man or as the leader of a church. If someone cannot find morality consistent between the two, fair. But, if his words are true...

[LongWaiter @LongWaitME]

@mamboitaliano__ I'm with you, Mambo Italiano...one of the BEST accounts I follow!

[LongWaiter @LongWaitME]

@sunsopeningband Back 10 years ago, the phrase was "5 more years." Hmm? 🤔

[LongWaiter @LongWaitME]

@GWHayduke97 @westfallx Catholic churches need special permission from their archdiocese to have TLM, very few Catholics actually have access to TLM. Parishes that offer TLM are packed.

[LongWaiter @LongWaitME]

@NiallHarbison Sienna has a beautiful gait!

[LongWaiter @LongWaitME]

@pausedME Martin - Having followed you for many years, even back in the Phoenix Rising days, I want to thank you for being open about your entire struggle--the losses and gains. You have remained an advocate for the community through out. Keep your star shining! 🌟

[Herpes Update @HerpesSupport_H]

Scientists used AI and molecular simulations to find a tiny “switch” in herpes viruses that lets them enter cells, altering just one key amino acid blocked infection and could point to new antiviral strategies.
https://t.co/ZLArbuXGHK

[LongWaiter @LongWaitME]

@DocKeiser Your stance is dangerous. You are not the first clinician to support such rhetoric. We don't know the cause of the hypothetical "bottleneck." There are people tube-fed in hospital & many have died by euthanasia & suicide. Learn more. #ME

[LongWaiter @LongWaitME]

@RepDavid Start by forcing pharmaceutical companies to negotiate competitive drug prices while cracking down on Medicare fraud. Entire markets have been developed to intentionally exploit and cheat federal systems.

[LongWaiter @LongWaitME]

@j_b_kennedy Consider that PSY are pretty bad at treating mental illness too. Successful interventions are usually based on slim outcome improvements that don't have longterm effects. It's a field that can help, but has always overstepped its legitimate authority to maintain relevance.

[LongWaiter @LongWaitME]

#MEcfs

[Dr Nathan Keiser @DocKeiser]

I went down a rabbit hole reading #Reddit threads where physicians talk about their patients — especially those with ME/#CFS, #POTS, and complex autonomic disorders. Some of what’s being said goes beyond frustration — it reflects a deep lack of understanding and compassion.