"#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! 😁
"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.
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
"… we are asking the community to submit a quick video recording sharing how long it took to receive a ME diagnosis, to be featured during the campaign week.
This recording will highlight why there is a need for more medical providers to be educated about ME…"
Full email includes script suggestions & other details:
"Teach ME Treat ME will be here in the next few weeks! While many of you are preparing to host medical education events, we know that thousands of you will be participating from home!
We are beyond excited to share the Show Up From Home Toolkit! This toolkit lays out an array of ways you can take action from home based on your energy level."
"We are less than a month away from launching #MillionsMissing 2024, and we are thrilled at the success we’re already seeing with the campaign!
We know the impact of #TeachMETreatME will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."
Of course they mention the speed of patient-led research, but I also love to see the recognition that patients help design better experiments and especially better controls. It's hard to control for dynamic conditions and lack of diagnostic lab tests, but patients have expertise.
For my USA followers - an #MEAction article on the NIH "Home Test To Treat" program:
"Acute COVID-19 treatment and testing is unfortunately becoming harder and harder to access with the U.S. government public health emergency having been declared ended. The Home Test To Treat pilot program is a way to fill that gap in an accessible and equitable way."
"Millions Missing 2024 is off to a great start! We are so thrilled that Teach ME, Treat ME is resonating with our community. Over 100 people attended our kickoff session last month …"
Interested in signing up to host an event? Or volunteer with a team? Sign up here:
"We are thrilled to announce our vision for #MillionsMissing 2024!
This year, we are launching a national campaign to educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach ME, and major hospitals to Treat ME
Our goal is to hold in-person events at these institutions the week of May 3 to May 12 …
WE NEED YOU to help pull off a campaign at this scale!"
"Join the UK and Scotland’s digital campaign this Millions Missing"
"We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?"