Donation to Tuller/research as respond to our critics

[andypants]

I think, in the world of hashtags and social media, that it’s more important to be easy to remember and spell than to be grammatically correct.

That is, you sometimes have to cheat a little to get a hashtag that is both understandable and easy. So #Justice4ME might technically point to justice for the disease (which I think is fine, justice would be for it to be studied as much as comparable conditions), but most people would easily see this as shorthand for “justice for people who are suffering from ME”.

My point is that easy to remember and easy to spell is probably more important than it being 100% accurate.

 

[Sly Saint]

This is the hashtag that #MillionsMissing are using this year: #CanYouSeeMEnow

The ME community often use 'ME' as 'me'.

 

[Kalliope]

Here are the suggestions so far for a hashtag/slogan to use when replying to the biopsychosocio-crowd with a donation to the ME-cause. Thank you for all the ideas and contributions!

Any other suggestions anyone?

#RealScience4pwME
#ExploreMEScience
#RealSCIENCEforME
#donate4MEScience
#biosci4ME
#ActualScience
#MEScience
#4MEScience
#GoFundMEScience
#MEScienceWorks
#MyalgicEncephaloAccuracy
#IDonatedToMEScience
#Justice4ME
#JusticeForME
#JustScience
#JustScience4ME
#Justice4MEpatients
#RealScientistsRealScience
#ScienceNotScientism
#Justice4pwME

 

[andypants]

Maybe pooling our efforts and use #CanYouSeeMEnow could be a good idea.

 

[Keela Too]

Maybe pooling our efforts and use #CanYouSeeMEnow could be a good idea.

But I sure ain't doing what the girl holding that banner did last year in London!! Brave lady!! It was a good message though.

 

[Kalliope]

Maybe pooling our efforts and use #CanYouSeeMEnow could be a good idea.

I like it as a slogan. You think it would be ok to adopt it this use?

 

[andypants]

Can’t see why not, it’s all for the same cause in one way or another

In one way it would be great to have a separate campaign that is more directly geared towards donating to science/Tuller, but I also think it would be easier to get some traction if it’s one shared message. Easier to support and understand for outsiders.

 

[Keela Too]

There can be many tags, some take off, some don't. Ones I see regularly are:

#pwme
#MyalgicE
#MEcfs (gradually going out of favour)
#PACEtrial
#PACE
#PACEscandal
#MyalgicEncephalomyelitis (less often as so long)
#TimeforUNREST
#MillionsMissing

I think adding #Justice4ME would be good, but really who knows which ones will catch on.
I also like #CanYouSeeMEnow

No harm in using more than one in a tweet

 

[andypants]

Very true!

 

[Kalliope]

In order to make a poll, we need to narrow down our list to 10 suggestions or fewer.
I've tried to make a new list by removing the most similar suggestions and went from this list:

#RealScience4pwME
#ExploreMEScience
#RealSCIENCEforME
#donate4MEScience
#biosci4ME
#ActualScience
#MEScience
#4MEScience
#GoFundMEScience
#MEScienceWorks
#MyalgicEncephaloAccuracy
#IDonatedToMEScience
#Justice4ME
#JusticeForME
#JustScience
#JustScience4ME
#Justice4MEpatients
#RealScientistsRealScience
#ScienceNotScientism
#Justice4pwME
#CanYouSeeMENow

to this list:
#RealScience4pwME
#donate4MEScience
#MEScience
#GoFundMEScience
#IDonatedToMEScience
#Justice4ME
#JustScience4ME
#RealScientistsRealScience
#ScienceNotScientism
#CanYouSeeMENow

Do you think this shortening of the list seems fair?
If so, I'll make a poll of the remaining suggestions and we can vote for the one we like most.

 

[Alvin]

Typically i would say start with the original list then do a second poll for the top 5-10, but i do mostly like your condensed list so i'm not impartial here.
Oh and my vote is for #RealScience4pwME as it would really get under the PACErs skins.

 

[Kalliope]

Typically i would say start with the original list then do a second poll for the top 5-10, but i do mostly like your condensed list so i'm not impartial here.
Oh and my vote is for #RealScience4pwME as it would really get under the PACErs skins.

Yes, that is what I tried at first. But turned out polls here have maximum ten answer options, therefore I reduced our list

 

[Alvin]

Yes, that is what I tried at first. But turned out polls here have maximum ten answer options, therefore I reduced our list

I see, perhaps they can raise that limit or 2.1 thread/polls?

 

[Trish]

I'm not sure I understand what these hashtags are for - I use twitter occasionally, but tend to avoid bothering with hashtags.

With respect to an opinion polls, I agree with your idea of choosing your preferred 10 options and having a vote. Otherwise these sort of polls can overwhelm you as you try to satisfy everyone's different opinions.

It will be a good gauge of how many people on the forum are interested in the idea too. If it generates a lot of interest and enthusiasm, you can always run another poll to narrow it down between the favourites.

Edited for clarity.

 

[Kalliope]

I'm not sure I understand what these hashtags are for - I use twitter occasionally, but tend to avoid bothering with hashtags.

With respect to an opinion polls, I agree with your idea of choosing your preferred 10 options and having a vote. Otherwise these sort of polls can overwhelm you as you try to satisfy everyone's different opinions.

It will be a good gauge of how many people on the forum are interested in the idea too. If it generates a lot of interest and enthusiasm, you can always run another poll to narrow it down between the favourites.

Edited for clarity.

Yes, I think ten options is plenty anyway, as long as most agree with how I narrowed it down.

I don't think a hashtag like this will ever trend, but IF it catches on among us patients and supporters, and is used over time when we donate, I hope it might reflect how many we actually are, cheering for research into ME. It is one of many ways to get more visible, and a very easy (and free!) method. It can also be used on Facebook.

And I agree a poll here on this forum is a good way to check whether or not there is sufficient enthusiasm for this idea. Let's see. I think it is worth a try

 

[Alvin]

As i understand you can click on a hashtag and see all the posts made with it, so anyone who wants to learn more would have lots of posts over time show under a particular hashtag

 

[Forestvon]

My favourite, so far.

#Justice4pwME
as the tag Justice4ME on its own can look like someone campaigning for themselves.
even #Justice 4MEcfs wd be clearer and many pwme are diagnosed with 'cfs'

 

[Kalliope]

#Justice4pwME
as the tag Justice4ME on its own can look like someone campaigning for themselves.
even #Justice 4MEcfs wd be clearer and many pwme are diagnosed with 'cfs'

It seems like this is the most popular suggestion. But there were several versions of it, and if we kept all of them for the poll, we'd lose other suggestions.
How about we see if Justice4ME wins the poll, and then continue the debate whether other versions of the slogan could work better?

 

[Forestvon]

It seems like this is the most popular suggestion. But there were several versions of it, and if we kept all of them for the poll, we'd lose other suggestions.
How about we see if Justice4ME wins the poll, and then continue the debate whether other versions of the slogan could work better?

Assume you mean that if Justice4ME wins then we can discuss variations of it afterwards.

Sorry I hadnt reached the post with the poll when I posted it as a lot to catch up, but posted it as would forget if I left it till I had rested and caught up!

 

[Kalliope]

Poll up. Let's vote!