Thread by @exceedhergrasp1

TW: death, severe illness

Here to support #DontLetMEDie! Let's talk about severe ME.

ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵

The quality of life in people with #MECFS is low on the median. 🧵#DontLetMEDie

https://twitter.com/exceedhergrasp1/status/1459323211737305090

Severe ME is extraordinarily impairing. Depicted are Merryn Crofts (L) and Whitney Dafoe (R) with severe ME.
Source is: me-pedia.org/wiki/Severe_an….

QOL & symptom survey instruments often aren't designed to capture debility this severe.
🧵#DontLetMEDie

Malnutrition is a risk in severe ME. Several reasons why severe #pwME may have digestive issues:
(1) Motility
(2) Allergies/intolerances/MCAS
(3) SIBO
(4) Trouble swallowing
(5) Malabsorption
(5) Too debilitated to eat/digest 🧵#DontLetMEDie ncbi.nlm.nih.gov/pmc/articles/P…

Many clinicians haven't seen severe #MECFS presentation & may misconceive the disease as one w/o a major effect on QOL in general.

For a more complete picture, consult @Healthcare_MDPI's Special Issue: "ME/CFS: The Severely & Very Severely Affected". 🧵 mdpi.com/journal/health…

Therefore, some have a misapprehension that severe ME "can't be" ME. Misdiagnoses of anorexia nervosa are common.

#MEAction has facilitated intervention in cases where clinicians refuse to proceed with enteral or parenteral nutrition, which can be life-saving. 🧵

#DontLetMEDie

Make no mistake: the demands of #DontLetMEDie are based on a history of clinical abuse. Severe ME exists, and while these patients require special care, there are clinicians with experience who could help craft reasonable guidelines for their care.

See the demands, below:🧵

That's all for now, folks! And thanks to the Chronic Illness Collaborative (@TheChronicColab) /fin!