#MEawarenesshour every wednesday on twitter

Yes, that works for me.

 

I just found this website today when looking at something non-ME/CFS related: https://www.symplur.com/healthcare-hashtags/pwme/

It looks like this company analyzes the use of healthcare hashtags, and it also looks like the hashtag #pwme has been trending in the top 10 over some time period (couldn't tell what time period).

From the site above, it appears you can brows related hashtags, tweets, etc.

Kind of interesting... but you may need an account to do much (I didn't sign up).

 

Just discovered that topics only trend if there is a huge spike, not a gradual increase of its use.
People including me, not realising this, have been retweeting useful posts outside the hour which include the hashtag so must have added to increased use.

Been trying to think how best to minimise this. I was thinking maybe best if poss to tweet your useful info earlier in week, then schedule to go in the hour a retweet with a comment just saying:
> #MEAwarenessHour NB If you want to retweet this outside the hour, please post the original tweet below, not this one wIth the #MEAwarenessHour hashtag as Twitter topics only trend if there is a huge spike <

I am learning to schedule tweets via Tweetdeck but easy to make a mistake!
And it all depends on state of energy and brainfog! Sigh....

 

It's MEawarenesshour again tonight.

Last week the hashtag was trending in the UK. Patients could see it on number 24 in the trending list on their Twitter account.

 

That was a good answer
https://twitter.com/user/status/1227690014731120642

 

too long for twitter but...
https://www.s4me.info/threads/heaviness-could-it-be-used-as-a-measurement.7247/

 

I've previously posted a graph on Twitter that showed a stark increase in the number of MAH tweets since last time, but I think I made a major counting error. The number of MAH was probably similar to last week. That would explain why we were trending again in the UK, but not at a higher ranking. Apologies for the confusion.

As penitence, I've tried to recount the number of tweets that used the hashtag on each MAH day going from 18 December 2019 to 12 February 2020. By focusing on the day rather the hour, I hope that the counts will be more comparable as sometimes the peak in MAH tweeting starts a bit sooner or ends a bit later. My Twitter feed lists days according to Central Europe Time, which is one hour later than London Time (so MAH starts at 9 PM).

Counts include all the tweets that mentioned the hashtag, but retweets without comment and likes aren’t included. I’ve recorded the tweet where I started and stopped counting for each of the MAH days. I’ve also recorded the tweet a 100 counts further to make it easier for others to check and replicate the counting (see info in attachment).

This is the figure I've got from counting with this method:


EDIT: expanded the graph to 11 December 2019 so that all increases are visible.

 

How to join MEawarenesshour on Twitter
For those who don’t have a Twitter account but would like to join us for MEawarenesshour, it’s really easy to get started!

Creating a Twitter account only takes a minute (literally). You can find the full instructions with images on this website:
https://www.wikihow.com/Make-a-Twitter-Account

In short, you simply have to give your email address, after which a verification code will be sent to you in an email (check your spam folder if you can’t find it). Copy-paste the verification code onto Twitter to clarify that this is indeed your email address. Next, choose a username and password, and you’re all set to go.

Once you've created an account, you can skip the option to choose a picture or customize your account settings (you can come back to this later if you want). To directly Tweet, press the “Home” button at the left corner of your screen and write a short message into the compose box at the top of your timeline (where it says “What’s happening?”). These are highlighted in the image below:




Make sure to use the hashtag #MEawarenesshour in your message as this will label and categorize your Tweet with others participating in MEawarenesshour. If you type #MEawarenesshour in the search bar at the top right corner of your screen and press enter, you will get an overview of all MEawarenesshour Tweets. You can look at the Top MEawarenesshour tweets or the Latest ones. Scroll down to see more.



You don’t have to use Twitter much to participate in MEawarenesshour, you could just log in every Wednesday at 8 PM London to participate in our online demonstration.

Hope to see you all next Wednesday!

 

https://twitter.com/user/status/1230250281386024961

 

Cautionary note: we don't really know how reliable these lists are.

We prefer to focus on the trending lists of Twitter itself where unfortunately we weren't listed in the UK yesterday. That could have been due to some fierce competition by Champions league football (the Spurs played yesterday).

 

Fab guide

Fab news

 

We have also made a tutorial video on how to to use Twitter to participate in MEawarenesshour (please don't laugh at the poor quality of the video - I did the best I could!)

https://www.youtube.com/watch?v=7Z57ljsB5PE

 

Really good. So important not to assume that people have the slightest idea of how Twitter works, let alone what it is exactly. Thank you.

 

https://twitter.com/user/status/1235001840510484481

 

On Sunday, March 8th, most of the USA (except for a few smart places like Hawaii, Arizona, and maybe a few others I've forgotten) is switching to daylight saving time. This means we are moving the clocks ahead by an hour.

I often miss the #MEAwarenessHour on Wednesdays (hard to be organized enough to either pre-set tweets -or- to get enough rest and remember to be online at that time).

But I wanted to remind folks of this time change. And I wanted to make sure I understand how the time changes will work.

I'm assuming the 8-9 PM UK time will stay the same and all the USA times will shift as needed? Thanks!

 

I'm not on Twitter but.... how about reminding people of David Tuller's piece about the SMILE (Lightning Process) study on stat news:

https://www.statnews.com/2019/12/13...awed-chronic-fatigue-syndrome-research-paper/

edited to add link to forum thread: https://www.s4me.info/threads/statn...ue-syndrome-stat-david-tuller-dec-2019.12818/

 

this seems to have become quite popular with non-ME folk also paying attention.

I'm not on twitter but would like to make a suggestion for maybe a 'theme'.

My suggestion at the moment is ME videos; the Dialogues ones, @Adam pwme (AKA Broken battery) ones, Grahams, this one on PEM

Code:

https://youtu.be/THlRW_YGZmE

I'm thinking the short informative ones rather than long interviews etc.

@Michiel Tack

 

Thanks Sly. I'm actually working on an update to my What is ME vid post guideline. Not sure when it will be ready though.