Sammy Lincroft, Missing Since 2019 with MECFS
#MillionsMissing
Missing from: Singing, Coding, School, Work, Walking, stanfinh, cooking, pain free life, everything
—-
Myalgic Encephalomyelitis is not just chronic fatigue.
—-
Teach Me Treat ME
Resources for Medical Practitioners To Learn More About Myalgic Encephalomyelitis
-Mayo Clinic Proceedings 2023
-NICE Guidelines 2021
-US 2021 Clinician Coalition Treatment Recommendations - Bateman Horne Center
-Workwell Foundation
-Open Medicine Foundation
Linktr.ee/teachmetreatme2024
—-
Things you can do today for people with MECFS
-Donate to @mutualaidforme’s ME Awareness Month mutual aid drive
-Support research by donation to @openmedf
-Send a letter to your government and health officials as a #GlobalVoiceForME
-Send the 2023 Mayo Clinic Proceedings to a GP near you
-Sign petitions to get severe ME patients out of dangerous situations
Links to do help: Linktr.ee/sammylincroft
—-
It’s Not Just In My Head, It’s In My…
Central nervous system
Autonomic nervous system
Metabolism
Cardiovascular system
Digestive system
Immune system
Lymphatic system
Muscular system
—-
ME is a complex neuroimmulogical and autoinflammatory disease.
Severe ME is more disabling than cancer, heart failure and MS. Severe ME kills.
1 in 4 ME patients are housebound or bedbound.
—-
MECFS is a severe post viral neuroimmune disease with no FDA approved treatment and no cure. Only 5% pwME recover.
Severe ME is often described as living death and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.
Outdated practices usch as GET and CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with COVID needs to be advised to #StopRestPace to minimize the spread of this horrible disease.
Research is extremely underfunded and necessary to improve long term outcomes for patient with ME.
—-
My name is Sammy Lincroft and I am one of the Millions Missing2024 with Myalgic Encephalomyelitis aka MECFS.
⠀
ME took a nuclear bomb to my life. I went from a world-traveling musician and skilled computer scientist to being unable to even sit up and use a laptop, reliant on IV fluids and 24/7 care for every basic need.
⠀
This Global ME Day I Go Blue For MECFS as a Global Voice For ME to fight for more than 50 million people worldwide with this devastating neuroimmunological illness and millions more with long covid 50% of whom meet the criteria for ME/CFS.
⠀
It takes on average 5 years for someone to receive a diagnosis of ME and 90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that doctors will learn to teach ME treat ME and give millions missing the care we deserve.
⠀
ME is one of the most neglected diseases on earth. It receives only 7% of the funding it should, only $5 per patient, less than any other illness in the NIH’s funding database. MillionsMissing have had their lives destroyed due to decades of neglect. But it is never too late to change.
⠀
ME is like quicksand. The harder you fight it the faster it will take you down. What we need are allies. Healthy people on solid ground who can throw us a rope. Who will hear our calls for help and bring us the healthcare and research for MECFS we need
⠀
I haven't been outside since 2022 (Severe ME)
Haven't seen the sun (chronic migraine)
Breathed fresh air (MCAS)
Stood on my own two feet (POTS) Gone one day without pain (fibromyalgia)
⠀
It is as though I live my life on a space station. Watching the Earth spin past me, connected only by my com link: new reports, text from friends and family on Earth, and of course my fellow astronauts the ME Community togther in NEISVoid. Today we send out an SOS. Doctors, families, friends, head our distress call. Ally with ME and #Teach METreat ME 2024
⠀
Beyond awareness take action by:
Donating to @mutualaidforme's ME Awareness Month mutual aid drive
Donating to research by @openmedf
Sharing the Mayo Clinic Proceedings on ME with local GP clinics
