Social Media - Community advocacy fail. Why?

[Jenny TipsforME]

Not specific to this situation, but high volume negative response does seem to backfire. It enables marginalised, essentially powerless people to be rebranded as bullies, which should be laughable but is actually very serious if it loses public support. I think retweets which are naming someone in a pressurising or negative way come under this (I separate this from eg #PACEgate which is about a flawed study rather than a person). Ben Goldacre will probably get alerts, depending on his settings. If someone did that to me it would really stress me out and not result in a positive dialogue (ie it would be the least effective way to communicate with me!).

In my opinion, most of the time we need to interact more broadly with different people rather than lots of focused rting. For example, the #openscience connection seems worth exploring. I noticed that researchers interested in open data are on board with requesting the PACE data. Obviously it ties in with their existing interests so little persuasion necessary.

Anyway, probably too serious for Christmas Eve. I'm meant to be getting up now for family lunch. I shall be tweeting seasonal trending # with a #MEcfs #RT4ME twist!

 

[Valentijn]

Ben Goldacre will probably get alerts, depending on his settings.

Alerts don't spam. If there are multiple retweets or likes of the same tweet, it compiles them into a single alert. So they get "25 people retweeted a tweet you were mentioned in", or similar.

These are public people who engage in public discourse.

 

[Bob]

Retweeting doesn't really increase the amount of content directed at someone. It just disseminates it to a wider audience and shows support for it.

I agree that high volume campaigns can be counter-productive, but liking and retweeting without an additional comment certainly is not. If you're going to object to such tactics, you'd might as well tell everyone to stop advocating entirely

I don't entirely agree. If a tweet includes someone's name and it gets retweeted or liked then (depending on their settings) that person receives notifications that the tweet has been retweeted or liked. So if a single person challenges someone on Twitter, and then 20 others like the tweet, it can appear in your notifications as if 20 individuals are challenging you, which could be interpreted as irritating or harassment. Alternatively, it could be interpreted positively, as 20 people supporting a particular point of view.

I'm always careful about the possibility of appearing to gang up on someone by liking or retweeting challenging tweets. I often leave tweets alone if two people are having a heated interaction. But not always; I often get myself involved in arguments as well.

There's always a balance to be struck between doing too much and doing nothing, so I'm not trying to say what's right or wrong in this particular situation, but I think we need to be aware of how our actions can be perceived. Retweeting and liking do have an impact.

Alerts don't spam. If there are multiple retweets or likes of the same tweet, it compiles them into a single alert. So they get "25 people retweeted a tweet you were mentioned in", or similar.

Actually Val, that's not the case for the default setting. I get alerted to every single like and retweet. But notification settings can be changed. BG has probably switched off many of his alerts because he has such a large number of followers, so he probably doesn't get alerted for every single Twitter action.

 

[worldbackwards]

Generally erring towards Bob's position as BG's just using any pressure as an excuse to get arsey and talk about a "hale(sic) of abuse" directed towards him. Whilst I've seen Coyne getting tetchy with him, I haven't really seen anyone else do anything other than ask his opinion, but he'll know exactly what he's doing with that description and it's best left alone.

But this is intriguing

https://twitter.com/i/web/status/679721268011233280

 

[Bob]

Generally erring towards Bob's position...

Just to clarify; I don't really have a position. I'm just saying be aware that retweeting and liking have an impact.

If we do nothing then nothing will ever change but as soon as we do something (that gets noticed) we get accused of harassment, so we can't win.

 

[Valentijn]

If we do nothing then nothing will ever change but as soon as we do something (that gets noticed) we get accused of harassment, so we can't win.

We can't let fear of harassment accusations paralyze us and prevent any actual advocacy from occurring. If someone is making unfounded accusations, we should be challenging those accusations as well.

Well-behaved ME patients are not going to make things change

 

[Jenny TipsforME]

We're not a Union or a profession with a Code of Conduct so we can respond according to personal preference. However, I set myself some rules which I rarely break (that DT article sent me over the edge a little bit!). Partly this is just a selfish tactic to save spoons - I don't have to decide each time and I don't lose sleep worrying if I've made other people lose sleep.

I strongly disagree that aggravating tactics against individuals are effective. Putting pressure on institutions probably is necessary unfortunately. So far MEaction seems to have a good balance.

 

[worldbackwards]

We can't let fear of harassment accusations paralyze us and prevent any actual advocacy from occurring. If someone is making unfounded accusations, we should be challenging those accusations as well.

Well-behaved ME patients are not going to make things change

But the thing with Ben Goldacre is that he's bending over backwards to stay out of this. Now, we may think that makes him a hypocrite, but you can't force him to have an official opinion on something he refuses to comment on. The likelihood is that he'd use any pressure as an excuse to say, "see, look at these animals of ME patients who can't control themselves", having ostensibly done nothing to ask for any bother.

The best we'd likely get anyway is a kind of half-hearted. Richard Smith style, "I know they're scum but give them the data anyway" type stance, which perhaps does as much harm as good, especially when more and more people are being unequivocally supportive.

If someone is clearly saying something that's completely ridiculous, for example Alan Carsons' "no patients can be trusted with any data because one person with ME was mildly critical of me in an obscure blogpost five years ago" stance (no, really), then I'd recommend that people expose his ridiculous and spiteful point of view for what it is. But you can't really pull people into the debate who don't want to be pulled, I think that's just counterproductive.

 

[BurnA]

But the thing with Ben Goldacre is that he's bending over backwards to stay out of this. ....
But you can't really pull people into the debate who don't want to be pulled, I think that's just counterproductive.

For me it's not about pulling BG into this - it's clear that he doesn't want to have anything to do with ME.
However BG uses Twitter to promote his career which is based on exposing bad science, and I'm sure he makes a lot of money out of this. Therefore for me it's fair game to expose him as a hypocrite.
He portrays himself as some sort of saviour of science yet avoids all discussion on PACE for years because he is too busy. If we don't speak up and expose him then we are no better than all the doctors and journalists who don't speak out against PACE even though they know it's nonsense. It is our duty to expose him and question how why he doesn't get involved.

And I certainly have no fear of the harassment card, too many people here are afraid of upsetting people. Guess what - that is exactly the reason that card gets played every time - to shut us up. We need all the attention we can get - we are already labelled as a group of orchestrated vexatious campaigners - that's not going to change so dony worry about a few likes or retweets for goodness sake.

 

[Valentijn]

However BG uses Twitter to promote his career which is based on exposing bad science, and I'm sure he makes a lot of money out of this. Therefore for me it's fair game to expose him as a hypocrite.

He's also tweeted about "Bigoted anti-psych ME militants violently threatening fluffy and adorable BPS researchers" articles on a couple occasions, with his own brief description of those articles.

He knows that the controversy about the ME/CFS research exists, and he spreads the narrative which is used to silence our critiques of bad science.

 

[BurnA]

He's also tweeted about "Bigoted anti-psych ME militants violently threatening fluffy and adorable BPS researchers" articles on a couple occasions, with his own brief description of those articles.

He knows that the controversy about the ME/CFS research exists, and he spreads the narrative which is used to silence our critiques of bad science.

Do you have any examples or links to some of the things BG has said about ME ?

 

[Valentijn]

Do you have any examples or links to some of the things BG has said about ME ?

They're on the forum somewhere. And on twitter somewhere.