Uncomfortable but important reading for any clinician: ME/CFS sufferers protest to demand decent medical care and treatment, and share their experiences of medical neglect. #MedEd #MedTwitter #MedMastodon #MedicalEducation #MECFS #pwME #LongCovid #DontLetMEDie

https://mecfs-med-ed.org/2023/03/13/dontletmedie-protest-me-cfs-patients-demand-medical-treatment/

The nasojejunal tube has been placed, the insertion went quite smoothly. The gauge is quite small so it doesn’t feel nearly as bothersome as the nasogastric tube I had in January, but on the flip side I hope it won’t get jammed in the long run.

Now they’re going to give me erythromycin so that the tube slides past my pylorus (end of the stomach) and into the small intestine. The feeding will start tomorrow.

#MECFS #pwME #DontLetMEdie #NEISvoid #gastroparesis #ChronicIllness #disability

Going to the nutrition department at the hospital today for a short hospitalization to get my nasojejunal feeding tube placed.

I weighed in at 46.6 kg / 103 lb this morning, meaning I’ve lost another 1.5 kg / 3.3 lb since I went for my initial appointment in the same department last month. And I’ve partly had to go on a liquid diet because my digestion has worsened, so it’s about time I get adequate nutritional support.

#MECFS #pwME #DontLetMEdie #LongCovid #NEISvoid #gastroparesis

This thread is excellent👇👇 #MedTwitter .@NHSEngland @DHSCgovuk @gmcuk please don’t ignore us and please #DontLetMEDie
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RT @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. 🧵
https://twitter.com/exceedhergrasp1/status/1633534573165568000

RT @exceedhergrasp1
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:🧵

Have the same problem. #LivingInTheGap between not well enough to work but not sick enough to leave. PIP assessors would laugh me out the room 🙁
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RT @hons65
Lying down at work cos it’s the only way I’ll get through the day. Can’t work full time due to #MECFS . Ill over 11 years. Hoping I’ll reach retirement before working myself into an early grave. #DontLetMEDie
https://twitter.com/hons65/status/1633452488631148545

Why haven’t the @MEAssociation or @actionforme shown any support for the #DontLetMEDie protest today? I don’t understand, this is the community you exist to support, so where on earth are you??

This #InternationalWomansDay how many more women will die or be refused treatment by @NHSEngland because they have #mecfs? NHS I love & support you, but now it’s time for you to do much better by this community, before more people die. #DontLetMEDie

https://twitter.com/i/broadcasts/1kvJpmQOppgxE