This is from posting pretty much solely on #MECFS , #LongCovid and related conditions and to a lesser extent chronic illness in general, which shows it is possible to build up followings on them, in case people either gave up on them or never tried.
Getting a larger number of followers is helpful when you're trying to provide information about an illness (ME/CFS, myalgic encephalomyelitis / chronic fatigue syndrome) that affects millions of people but is still not very well known. ME/CFS is often is not even taught in medical schools.
An #MEAction advocacy campaign called "Teach M.E., Treat M.E." is trying to correct this problem:
"Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."
"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.
"We are THRILLED to share the rolling successes of our 'Teach ME Treat ME' campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months!"
Article has lots more details along with reports of other Millions Missing events! 😁
You can also print the document (8 pages) to bring to your next appointment. I've given it to several doctors - and so has my husband, who does not have ME/CFS!
I realized that once again I completely forgot to spell out the abbreviations ME and ME/CFS.
So, for folks who have never heard of this illness, or who may mistakenly know it as "chronic fatigue" (which is a symptom of many illnesses and is not the same as an ME or ME/CFS diagnosis), here's a link from the #MEAction website:
You can also print the Mayo Proceedings document (8 pages) and bring it to your next doctor appointment. I gave a copy to my cardiologist. I know he read it because he referred to it in my chart notes! 😁
"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."
TIME100 Health is a list of the most influential people in 2024 within health
Jamie Seltzer, scientific director of #MEaction made the list. In the presentation of Seltzer,TIME writes US medical schools have barely taught about ME/CFS & Jamie Seltzer is working to change this.
I'm not sure anyone is in the phase of planning new events at this point, but this page does have good information, including a link to the "Show Up From Home" toolkit.
I've attached an image with an overview - list of activities according to energy required - but please go to the actual file for more details! 😁
"Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.
... We want to say thank you to the community that has enabled this work"
Through #MEAction, Seltzer is helping to spearhead a major campaign to improve ME/CFS education, diagnosis, and treatment. Thanks to Seltzer’s efforts, staff at big-name institutions including Emory, Brown, and Georgetown are working with #MEAction to improve education programs and treatment plans related to ME/CFS. Those efforts build on a partnership Seltzer made last year with the Mayo Clinic, through which she helped revamp the health system’s public-facing ME/CFS fact sheet and designed an algorithm to help doctors better diagnose and treat patients.
Lb: con once años, después de una mononucleosis, empecé a no poder dormir más de cuatro horas al día. Nadie reparó en ello. Dejé de tolerar las grasas (adiós al tocino del cocido, a las sardinas y, en momentos chungos, al aliño de las ensaladas) y tenía diarrea tres o cuatro veces al mes, todo convenientemente ignorado y normalizado. Tenía «dolores inespecíficos» y un cansancio atroz, pero eso era «depresión infantil». Luego fue juvenil, luego fue crónica. En mi vida pasaban otras muchas cosas que lo podían justificar, así que, así se quedó.
Como tengo el umbral del dolor muy alto y una tolerancia al mismo nada desdeñable siempre me dediqué a ignorar el cansancio y trabajar como una mula (solo dormía cuatro horas, mis días eran muuuuy largos). Periódicamente me daba un chungo muy chungo que me dejaba fuera de combate meses... Pero eso era la depresión.
Sigo #MEAction #EMsfc
«Tienes un síndrome de fatiga crónica de manual. Lo voy a poner muy claro en el informe, por si te hace falta». Ese hombre sabía lo que tenía enfrente de mí, aunque yo aún no era consciente de ello.
Del laberinto burocrático y el maltrato institucional del INSS aún me queda un buen trecho, pero al menos ya sé qué tengo y cuáles son mis opciones.
Tiempo de diagnóstico: 33 años, 2 desde que se agravaron los síntomas.
No me gusta llamarlo síndrome de fatiga crónica porque es reducir una enfermedad muy chunga a un solo síntoma y porque la mayoría de la gente oye «vaga oficial». Si otro nombre es encefalitis miálgica, que tampoco me gusta, pero es el que uso. #MEAction #EMsfc