Erin C. Sanders, NP Apr 7, 2023

ME reminds me so much of what patients w/ neurodegenerative diseases go through; a slow erosion of what previously defined you, while being acutely aware of each loss.

But the cruelest part of the disease is that ME punishes the human need to connect w/ others & experience life.
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RT @ErinSandersNP
PEM is such a fickle beast.

More people need to understand that it doesn’t necessarily take away your CAPACITY to do activities, but…
https://twitter.com/ErinSandersNP/status/1643984116105506825

Erin C. Sanders, MSN, WHNP-BC (She/Her) on Twitter

“PEM is such a fickle beast. More people need to understand that it doesn’t necessarily take away your CAPACITY to do activities, but it is the COST you pay to engage (physically or cognitively), which is much higher than expected or reasonable and often completely disabling.”

Twitter
Show threadErin C. Sanders, NP Apr 7, 2023

2/ The physical motor decline from likely metabolic exhaustion and waste accumulation, is intriguingly coupled with sensory hyper reactivity/hypersensitivity, with the body responding to every sensory stimulus disproportionately…

Like an exposed nerve.

Show threadErin C. Sanders, NP Apr 7, 2023

3/ Because of this, the body utilizes way more resources than it should exacerbating both physical and cognitive fatigue.

What does a person do when just responding to the world around you or *thinking* become a form of strenuous exertion?…

Show threadErin C. Sanders, NP Apr 7, 2023

4/ Do you know the thing that scares me most about this disease?

ME can kill & people in our community have died. But more often, it doesn’t kill you. Instead, it causes suffering so profound it makes you wish you were dead just to get relief from the constant agony of existence

Show threadErin C. Sanders, NP Apr 7, 2023
5/ My fear is getting so sick that I can’t stand to have my loved ones physically near me. That the voices of my my sweet son, my husband, my parents - those wonderful comforting sounds could cause unrelenting pain. That just seeing them or hugging them could level me for days…
Show threadErin C. Sanders, NP 

6/ That is the despair and isolation of severe ME.

The reason they call us the #MillionsMissing is because when you get ME you slowly disappear.

And that’s to protect what’s left of us for as long as we can.

But I need our allies to #SeeME #FundME and #TreatME.

Please 🙏

Apr 7, 2023 at 11:00pmWeb
Show threadErin C. Sanders, NP Apr 7, 2023

7/ Many clinicians are patients.
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RT @ErinSandersNP
A core mission of mine has become deconstructing the false binary fallacy of clinician vs patient that is perpetuated by both sides.

And instead making space for the many clinicians & trainees who are also patients & bring hard earned patient wisdom to their practice & science🧵 https://twitter.com/marklewismd/status/1578820977542148096
https://twitter.com/ErinSandersNP/status/1581287362398945282

Mark Lewis on Twitter

“Sometimes this feels like the most meaningful piece of equipment in the whole hospital”

Twitter
Show threadErin C. Sanders, NP Apr 7, 2023

8/ If you are interested in finding out more about #pwME, check out some of these references/resources:
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RT @ErinSandersNP
9/ If you want to learn more,

@BatemanHorne has one of the biggest collections of CME that I have seen on these topics. http://batemanhornecenter.org/providers/cme/

In addition to Dr. Kaufman's CME https://ceitraining.org/courses/course_detail.cfm?mediaID=872#.Y3BkQhZOkWN

Unrest film is not offering CME but…
https://twitter.com/ErinSandersNP/status/1591634452975087618

CME

BHC provides resources from continuing medical education (CME) offerings and other professional literature specific to ME/CFS, FM, and long COVID.

Bateman Horne Center
Show threadErin C. Sanders, NP Apr 7, 2023

9/ ME/CFS remains the most underfunded disease at @NIH per disease burden. Like many chronic illnesses it disproportionately impacts females who have historically been excluded from research due to the potential for child bearing.

https://youtu.be/f1sNPjSnUgw

The Most Underfunded Disease at the NIH

YouTube