Call-to-action: Video yourself for World ME Day 2023!

Follow Holly’s example and tell the world what happens when pushing harder makes you sicker,  for World ME Day on May 12th.

ME, or Myalgic Encephalomyelitis, is a debilitating disease that affects millions of people worldwide. One of the most debilitating symptoms of ME is post-exertional malaise (PEM) – where pushing harder can make you sicker.

WAMES is joining with other members of the World ME Alliance in inviting people with ME to share your experiences of post-exertional malaise (also called post exertional symptom exacerbation, PESE) by recording short videos of yourselves in your native language. Sharing true stories from lived experience is incredibly powerful.

Take action in 5 steps!

  1. Take a video of yourself
  2. Start by saying “I live with a disease where pushing harder can make me sicker…”
  3. Tell the camera what happens when you push through
    Share your video to social media, using the hashtags #WorldMEDay and #LearnFromME
  4. Tag @WorldMEAlliance and @wamesmecfs so we can repost your video

By sharing your story, you can help raise awareness of this disease and the impact it has on your life, and that of millions of others around the world.

Sharing your experience can also help to educate others about the reality of ME. All too often, people with ME are dismissed or not believed when they talk about their symptoms. By sharing your story, you can help to break down the misconceptions surrounding ME and help others understand this disease.

Not sure what to say?

If you’re not sure what to say about your experience, here are a few prompts to help you get started:

  • What triggers your post-exertional malaise?
  • How does post-exertional malaise affect your daily life?
  • What does it feel like when you experience post-exertional malaise?
  • How long does post-exertional malaise last for you
  • What do you want the world to know about ME this World ME Day?

Get help to make a video

We’ve also put together this short guide to taking a high quality film using your smartphone. And #MEAction have storytelling training happening this year too.

Once you’ve made your video, remember to post it to social media on May 12th using the hashtags #WorldMEDay and #LearnFromME.

Tag @WorldMEAlliance and @wamesmecfs so we can repost your video!

We understand that sharing your story can be difficult, but know that your voice matters. By sharing your experience, you can help to make a difference and raise awareness of this often-misunderstood disease.

We encourage everyone to listen to the stories shared on World ME Day and to take the time to learn more about this debilitating disease. Together, we can work towards a better understanding of ME and a brighter future for those living with this disease.

 

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