#MEawarenesshour every wednesday on twitter

It thought this was an idea worth considering, as online presence seems like one of the most powerful assets of the ME/CFS community.

As I understand it, the main idea is to take one hour per week (Wednesday 8 PM London time), where we all tweet about ME/CFS so that it becomes a trending topic on Twitter. You could save some tweets you want to post during the week (for example about an interesting ME/CFS study that was published) and save them for that hour. That way, we could get the attention of people outside the ME/CFS bubble as ME/CFS could become one of the trending topics (and people, journalists sometimes look through these to know what's going on).

I don't know who to give credit for this idea of #MEawarenesshour, I just saw it on twitter where Mira explained it quite well.

https://twitter.com/user/status/1213257641914458112

 

Thanks for posting that. I saw some tweets on Wednesday but I couldn't work out where it was instigated from.

 

Apparently it's on old idea from 2015-2016, that is getting new traction, I think mostly from german ME/CFS patients and patient groups.

There's a twitter account devoted to it, with more than 3000 followers.

 

I think it is a great idea and was very enthusiastic about the ME awareness account and hashtag in the beginning.
But got increasingly annoyed with all the videos by one person calling ME patients abusive towards other patients and researchers, and eventually I had had enough.

 

I don't have evidence but I have an art page on both twitter and facebook and can say the use of hashtags on twitter can be quite powerful in reaching new audiences. People use hashtags to search for what interests them. Facebook unless one works the post and/or shares posts to groups it generally goes nowhere. People on facebook don't share much to there personal pages unless its a pic of a cat or a quiz on if you were a potato what kind of potato would you be.... Twitter on the other hand people retweet often. Follow each other. Some months according to twitter analytics I have had tweet impressions of 63k+ (with a following of less than 1000 people at the time) which basically means the tweet has shown up on someones timeline that many times. Gaining followers is also quite different than facebook. If I spend 15 mins a day simply looking up say, #oilpaintings, and liking them, I can easily gain 10 new followers.

 

Problem is not all are singing from the same hymn sheet. So do we really want more exposure of the 'squabbles' and divisions within the community?
Personally, I would like to see more attempts (possibly behind the scenes)at cohesion across the various groups to produce a clearer set of goals.

 

Agreed, but with the way the condition has been (mis)diagnosed I think we're unlikely to get that. Maybe when research is much further forward, but not now.

Also, there are people who have been diagnosed who have been told and genuinely believe that their condition is down to past psychological trauma. Some of these folks don't want medical research, they actually do want more of the same, even though it hasn't cured them so far.

We might attract more people, but equally we might spend a lot of personal resource arguing in pointless circles.

I don't know how we can change that.

 

It's ME awareness hour tonight at 8PM London time! Hope you can all join us this evening.

I suspect many patients will like the experience because there's a feeling of brotherhood and a connection with other patients, a bit like when you go to an actual demonstration.

 

Patients made some beautiful posters to raise awareness:

 

Will pass on the feedback.

A bit of encouragement: last week #MEawarenesshour made it Top 100 Twitter Trend Charts in UK. Hope we can do better each week.

https://twitter.com/user/status/1217566231521308675

 

a famous disability rights activist from Germany did tweet about #MEawarenesshour (the tweet includes a short good television report about a young very severe patient from may last year)

https://twitter.com/user/status/1220094324693774336

 

It’s MEawarenesshour tonight at 8 PM London time. Hope you can all join us.

Some patients counted the number of tweets per MEawarenesshour and it seems that we’re getting bigger and stronger every week. Hope to break a new record tonight!

 

I agree. I don't have ME, myself, but that combination of visuals behind the text and the radiating sun graphic looks like the scintillating visual migraines I occasionally get.

In relation to visual "noise" on web pages, I've never been able to understand why some ME orgs and blogs use cascading graphics on their pages. TYMES Trust does or used to do this, with the dandelion seed head graphic floating down. I've seen ME blogs with butterflies drifting down the pages. Graphics that cascade from the top of web pages make me feel nauseous and with my graphic designer's hat on, it's not good design.

 

We did a little better than last week. For a brief moment in time, we were more popular than love island in the UK.

 

I can't see the image in your post Michiel for some reason, does it show it for you?

 

Hmm, yes I could see the image posted. Tried something else - hope it works for you now.