The ME advocacy movement cannot go on with only sick people participating in it. We need non-disabled people to help too. We cannot keep using our limited energy begging people to care.
People with Severe ME are a crucial part of the ME movement, making up at least a quarter of all patients, and we must always work to amplify the voices of those most affected and neglected.
For more info check out @bateman_horne_center
To donate, go to @openmedf or @solve_cfs
To get involved in advocacy see @meactnet
To learn more from patients themselves, check out the following and many more:
@aditisroom
@mayabee24
@quella_the_dizzy_octopus
@franhaddock_
@crazycatboy13
@nebulow
@thejournalingrat
@armond.needs.rest
@dizzyissy__
@thatchronicallyillchristian
@jillyan24
@therachaelferrera
@siobhansimper
@saveliznevraofficial
@dougieslifewithmecfs
@beeba.beats
@shimaveggies
@reakiro
@rhymeswithdiva
@spoonfuloflindsay
@small.figs
@alilbitofaith
Sources: wecrunchme and openmedf
#FrailAndFurious #MillionsMissing #mecfs #mecfsawareness #MyalgicEncephalomyelitis
a month agobrigittebrigode
Hi there have you looked into IGIV? I’m curious I think that could help it’s expensive but insurance can cover it if you have proven inflimation in your brain
a month agotaliaheals
No one should have to fight this hard just to be seen and heard. Sending so much love to everyone navigating ME. 💛
6 months ago_lilsilva_
Thank you so much for your advocacy and educational content! I was wondering if a nasogastric or g tube for food has been considered? Is that something that could help people with these conditions?
6 months agoivy.olive.handmade
Can you please link evidence from slide 2 re ME impacting life more than MS, lupus and parkinsons combined and also that it has a worse quality of life than RA? Only because I find any kind of comparison of suffering between disabled people based solely on diagnosis as problematic (because we all vary so much as individuals).... but I also accept my voice is just mine, and so like to keep a file on my phone of studies that show various perspectives.
6 months agobreathe_doggos
Can we have a reference for the 1/30 stat? I find that really hard to believe tbh. But happy to be proven wrong, just want to fact check
6 months agoquella_the_dizzy_octopus
Thank you so much for investing your limited energy into making this wonderful post @aditisroom 🥹 👏👏
6 months agowearegoing.tothemoon
thank you for making this. i am at the point where i would prefer for my loved ones and allies to spent their energy raising awareness than checking in on myself. i am too afraid to ask this for the disappointment of when they’ll likely say no. we need awareness so bad. the world would rather dissociate, look away and breathe c19 and other infections at each other. than look at reality.
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