#TeachMETreatME

Рет қаралды 569

Ай бұрын

Recently, we asked our community how long it took to receive their diagnosis of myalgic encephalomyelitis (ME, aka ME/CFS). We had over 400 responses from across the globe. The answers came in quickly and almost every one was measured in years- not months. The average time from our sample of responses was over 8 years.
Imagine what that time is like- when you are having incredibly debilitating life-altering symptoms and you cannot find an answer or worse you are given a wrong answer with advice that actively harms you. You are losing your ability to work, to take care of your own bodily needs, relationships might be strained…and you go to your healthcare provider and they cannot help you.
We are working hard to change that scenario for all those who are yet to be diagnosed and those who are diagnosed but need knowledgeable care. #MEAction’s annual #MillionsMissing campaign has a theme of Teach M.E. Treat M.E. this year. Learn more at millionsmissing.org.
#TeachMETreatME is a campaign to educate hospital systems and medical schools about ME/CFS. It is also an effort to encourage your own clinicians to learn more about ME by taking a free continuing medical education (CME) course co-authored by MEAction’s Jaime Seltzer and Mayo Rochester clinicians. It is a Concise Clinical Review so while thorough, it is meant to be done in a manageable time frame.
We need your help! Can you please write to your clinicians (via email or message through your portal) and ask them to take the CME? (If you are not in the US, they can still learn from the information and perhaps you can add a quality CME from your country.) We offer sample language that you can copy and paste here: docs.google.com/document/d/15...
#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #MedEd #CME #chronicIllness
Video description: Background of a black screen with name, years to diagnosis, and the country the person lives in show on the screen in white lettering. They change and get faster and faster as they go. At the end the text switches to what those years meant- years of waiting, being gaslit, etc.

Пікірлер: 10

@amybreakwell8509 Ай бұрын

6 years, and during that time I got steadily worse. I hear that if you get diagnosed quickly you can stop the progression of the disease and remain more functional, but that ship sailed long ago. This is why it’s so important for medical schools to finally start teaching M.E.!

@mcfunwow Ай бұрын

32 years - Toronto, Ont., Canada

@grumpyoldbstard9352 Ай бұрын

10 Years UK

@rosariodelafuente1871 Ай бұрын

Aún no tengo este diagnóstico, si la sensibilidad química múltiple y la fibromialgia, No hay doctores que atiendan aunque si todos los síntomas. Asturias (España)

@jayawilder3835 Ай бұрын

Nobody asked me to respond to this survey. It took 20 years to get my diagnosis. The first 10 years were full of verbal abuse and open hostility from self-important male doctors who thought I was lying to get their valuable attention. For the latter 10, a kind but ignorant (and somewhat elderly) doctor diagnosed "nervous exhaustion". In other words, I was attention seeking but I couldn't help it. Although he still would say "what is it NOW?" and once tried to stab me with a pen to prove I was malingering. When he retired, a younger doctor who had heard of the condition had a lightbulb moment, but only after I was hospitalised 18 times in 20 months with skin infections requiring lancing and antibiotics. It's a neuro-IMMUNE condition, folks. At least in part. UK.

@suemarie6032 Ай бұрын

25 years. I had 2 non-believing GPs and it wasn't until I was almost as bad as I was at onset that I literally begged to be referred to specialist. Then I was on the waiting list for an out-of-town highly-ranked ME specialist for 2 years. I felt instant validation once the formal diagnosis was made but that feeling was short-lived when my doctor never once brought it up again and family thought I should be better.

@whitezulu3793 Ай бұрын

I had tick bite fever in in South Africa in 1988 and was first diagnosed with postviral fatigue syndrome. I finally got a confirmation that it was ME in 1999, 10 years later after emigrating to England.

@rejeanbourque1522 Ай бұрын

28 ans, ville de Québec (Canada). Conséquence, 15 ans en psychiatrie à me faire dire que c'était une dysthymie (fond dépressif), résultat, j'ai pris de nombreux médicaments non nécessaires, j'ai fait des nombreuses urgences à cause de ses médicaments. Bref, hôpitaux, spécialistes pendant tout ce temps pour RIEN. Et ta vie tourne en rond. Depuis 2017 que je sais, arrêt de tous ses médicaments. Participer à des réunions dans le bon groupe et finalement, découvrir que l'on n'est pas seul et fou. Message à tous, ne pas oublier que l'on se doit à la prochaine génération, donc on participe aux associations style AQEM et on fait bouger les choses. On ne lâche pas.

@roonbooks3227 Ай бұрын

The verbal abuse I endured for decades needs to be reported...but....I HAVE NO WHERE TO REPORT!! this illness has been going on since the beggining of time. I feel like I've been taken advantage of in so many ways. "They" made lots of money from me but I got zero help,zero diagnosis. There should be law suites over this total corruption on many many levels

@roonbooks3227 Ай бұрын

And....none of this makes the news...EVER!!