Ally for ME
Over 55 million people have ME/CFS, a disease more debilitating than HIV, cancer, MS, and heart failure.
We need doctors to stop GET & CBT and learn to diagnose and treat people with ME according to the Mayo Clinic Proceedings & NICE Guidelines.
We need our friends and neighbors to provide material support through @mutualaidforme so our community can survive.
We need research through @openmedf & @solve_cfs
We are too sick to fight this on our own. Please #AllyWithME on May 12th.
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To see a full list of initiatives and template posts you can use to #AllyForME see
Tinyurl.com/ME.AwarenessTemplates2024
For information about ME for doctors & patients see linktr.ee/teachmetreatme2024
To learn more about ME follow
@m.e_and_more
@myalgicencephalomyelitis
@franhaddock
@paused_me @whitneydafoe
@millionsmissingvoice
(tag your favorites in the comments!)
And keep tabs on the hashtags #MillionsMissing #NEISVoid
#MyalgicEncephalomyelitis #MECFS
#AllyForME #GoBlueForMECFS
#TeachMETreatME
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Thanks to
@MyalgicEncephalomyelitis
& @MEAdvocacy for creating the #AllyForME Campaign.
See their pages for future updates.
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In 2018 I caught a virus and my life was irreparably changed. The post viral illness Myalgic Encephalomyelitis drained me of my energy, sent me into frequent episodes of periodic paralysis and began a 6 year spiral towards living death.
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My cognitive and physical energy is now destroyed. I have 3% of the working capacity I once did. But MECFS does not only affect me. 1.3% of Americans have ME.
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ME is sometimes misleadingly called Chronic Fatigue Syndrome (CFS) despite chronic fatigue only being 1 of over 36 symptoms caused in Myalgic Encephalomyelitis due to exertion in a process that defines the neuroimmunological illness: Post Exertional Malaise (PEM).
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Fatigue is to ME as a match is to a nuclear bomb.
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This disease is quicksand and the harder you fight the faster you sink.
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But with 55 million cases of ME worldwide and over 100 million patients with the related disease Long Covid, how can I simply sit back and watch as patients are mislead into harmful Graded Excercise Therapy or simply left in limbo with 90% of cases undiagnosed?
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That is why I ask that this May 12th World ME Day and ME Awareness Day you Ally For ME and support the millions Missing with ME and Millions More with long covid.
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I am a Global Voice For ME because advocating for Research For ME and for doctors to Teach ME Treat ME is my only hope.
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I am bedbound with severe ME 24/7. I require around the clock care for emptying bedpans, bringing food and water, assisting with medication and hygiene and almost every interaction I have with the physical world.
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Writing the ME awareness content that you see here has led to PEM induced migraines, hives, muscle spasm & weakness, and periodic paralysis and loss of speech. It has made my body feel as though acid runs through my veins and I am crushed under a tidal wave, gasping for breath.
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Patients like myself are slowly killing ourselves for the desperate hope that someone will hear us and help.I urge you to be that ally.
