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Every Wednesday at 8-9pm UK time on Twitter, is ME Awareness Hour. It’s a weekly online protest to raise awareness of the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). An hour where the ME community and our allies join together to boost awareness. The idea is that if we all concentrate our efforts at the same time we can get ME trending on Twitter, and get our voices heard. It’s been very successful so far but we need your help – please join us. 

The following post gives some simple tips on how to get involved. Together we will get our voices heard.

Image by A Journey Through the Fog

What is ME Awareness Hour? 

Every Wednesday at 8 PM London time, there is an international online protest on Twitter to raise awareness of Myalgic Encephalomyelitis. One hour every week, patients and their loved ones from all over the world join forces to tweet about ME using the hashtag #MEawarenesshour. The event takes place simultaneously in all time zones to achieve maximum influence. 

You can look at it as an online demonstration. Many ME patients are too ill to march the street and demand more research or better treatments. So we have to find a different way to make our voices heard. Online presence might well be one of the most powerful assets of the ME community. 

If you are new to ME/CFS and would like to find out more, please click here.

What is the purpose of ME Awareness Hour?

It’s estimated that up to 65 million people worldwide live with ME yet research has been severely underfunded for decades, and our community is often ignored and forgotten. We need to change this. We need our voices to be heard. But it can be hard to raise awareness of a condition that is often misunderstood – hence our virtual demonstration. 

The main goal of #MEawarenesshour is to get media attention, raise awareness and inform the public about ME. There are a lot of journalists, doctors and policymakers on Twitter and trending topics can influence media coverage. We might not reach number one in the charts, but if we consistently show up in lists of trending topics, it’s possible that our message and stories get picked up. This is an initiative that costs practically nothing and takes little effort, so we think it’s worth a try. The hashtag has already appeared in some lists of trending topics in the UK and the number of #MEawarenesshour tweets has been steadily increasing over the last few weeks. 

#MEawarenesshour is also a way for ME patients and their loved ones to connect and unite. It’s one hour a week where patients don’t have to feel alone in battling this devastating illness. The hashtag #MEawarenesshour has become an accessible resource where people can read about ME patients’ experiences, their struggles and the daily injustices they face. It’s a time and place where patients and their loved ones can meet and share stories.

Worldwide, every Wednesday

Image by Lisa C

ME Awareness Hour takes place every Wednesday – simultaneously in every time zone

🔷Los Angeles – 12pm

🔷Denver – 1pm

🔷Chicago – 2pm

🔷New York – 3pm

🔷London – 8pm

🔷Dublin – 8pm

🔷Madrid, Rome, Berlin – 9pm

🔷Helsinki, Athens – 10pm 

How to get involved

By Daniel Loy

There are many ways to help boost our voices for ME Awareness Hour. If you don’t already have a Twitter account, it’s easy to set up and doesn’t take long. Here are a few ways you can get involved:

  • Tweet about your experiences living with ME – Include photos, blog posts, quotes. Search the hashtag #MEAwarenessHour on Twitter to read other people’s tweets and get some inspiration. If you don’t have ME yourself – Do you have friends or family members who live with ME?, you could tweet in support of them.
  • Retweet other people’s tweets. This is probably the easiest way to get involved. By doing this more people see the tweets, and their voices are boosted. My Twitter account is @JourneyFog if you would like to share my tweets. 
  • Retweet with a comment adding the hashtag #MEAwarenessHour. Boosting other people’s tweets using the facility to ‘retweet with comment’ adds to the number of hashtags.
  • Comment on other people’s tweets. Show your support by commenting on other people’s tweets about ME. Don’t forget to add the hashtag #MEAwarenessHour
  • Follow the ME Awareness Hour accounts on social media. ME Awareness Hour accounts have been set up on Twitter and Facebook. Follow these accounts for inspiration and up-to-date information. 
  • Schedule Tweets if you are unable to participate live. If you are not available at this time, or your health prevents you from joining in live, you can schedule tweets in advance using Apps like Buffer, Hootsuite and Tweetdeck. I personally use Buffer and easy to set up and schedule posts often days in advance. Here’s a simple guide on how to schedule tweets using Tweetdeck
Image by Lisa C

A Tool Kit website has been created to make it easier to get involved. It includes images that you can use to promote ME Awareness Hour, and a time zone calculator, along with other useful information. Please click here to find out more.

Addressing concerns

A couple of people have expressed concerns that this initiative is a waste of our energy, and that is just an excuse to whinge, or that it’s not going to be effective because only people in the ME community will see the tweets. But this is our truth, our reality, our way to fight for our life to be seen. This is what we are protesting against, because we want help and change. 

Our hope is that as this protest grows, more people outside our community will see our words, our reality. There are a lot of journalists, doctors and policymakers on Twitter and trending topics can influence media coverage. 

If we can get #MEawarenessHour regularly trending on Twitter, surely we will start to be seen by the people that can make a difference. And maybe we can change people’s perception about this debilitating illness. Personally, I feel empowered by this protest. I’m bedbound and am limited by what I can do to raise awareness. Seeing this movement grow, and connecting with fellow ME sufferers online, fills me with hope and a sense of community – we are not alone and together we are stronger. 

Please join us – together we are stronger 

Now you know all about ME Awareness Hour and how to get involved, we hope you will join us this Wednesday. We really do believe that we can make a difference with this weekly protest, but we need your help. 

Let’s combine our voices and get the recognition we deserve. You don’t have to live with ME to get involved, just tweet using the hashtag #MEawarenessHour to show your support. 

See you on Wednesday

Thank you

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