ME charities' response to the Reuters article

Seconded. John's got a nice radio voice.

 

Hi Trish!

Noted, we are working, very very hard, on additional things. As a patient network organisation, we would welcome anyone that wants to volunteer with us to change all of these damaging strategies. We are: 1 staff person in the UK and a few volunteers, most fellow pwME, so you can imagine the amount of work and sacrifice that goes into these things. Yet, I think that we are doing the best we can. You, or anyone else, might disagree with the strategy (I don't know if you do!) but we are doing all that we can and I am proud of our team. We are always reading and interacting with you all and it's super valuable, we can improve strategies moving forward! Team work!

 

NO worries at all Trish, I didn't take as a criticism No coordinated plans behind the scenes as of now, I am afraid. Have a good weekend and thank YOU!

 

That's what the original article entailed.

[Edit: everyone here has been really supportive of #MEAction in general and me in particular. And I still wish we could do more.]

 

I wholeheartedly agree with this idea. How we can make it happen?!

 

Think this was the first article #MEAction released, before the statement containing the “Letter to any Editors” appeared...

https://www.meaction.net/2019/03/14/fighting-for-rigorous-science-and-accurate-reporting/

@JaimeS have I got that right?

 

Thanks

 

They've had years to prepare a response to this kind of crap, the militant anti-science patient trope has been around for a while now.

 

I expected the piece to be more substantive than it was, and include some significant point that would need careful rebutting. Instead it turned out to be pretty empty propaganda. But then we had some people react stupidly on twitter and do everything they can to make themselves and other patients look bad. These sorts of things are difficult to predict.

 

I also expected it to be more... something. To have something to it. Instead, it was empty of logical argument and mostly consisted of playground-level nonsense.

But playground taunts stick in the brain.

We're countering not arguments at all anymore, but propaganda.

 

That was always why simply trying to counter with the science was never going to be sufficient. The science has never mattered to them. But there is no need to hurry over a powerful response. One can see potential benefits in delaying it, so that when the Cochrane developments become known, their cheerleader- in -chief is mired in controversy. Strike too early and the furore might blow over too soon.

 

How to Defeat a Propaganda Campaign
Defense Against the Dark Arts 402

https://www.thebalancesmb.com/how-you-can-defeat-propaganda-2295236

 

Researching this sort of thing is about 5-10% of my time lately. It's about our fight but it's also interesting to me because we are currently mired in propaganda and anti-propaganda efforts in every aspect of our media-saturated lives.

You know me, I love that they're calling it Defense Against the Dark Arts.

 

It gets complicated though. It seems to me that not only do the BPS crowd expertly wield propaganda but they also use the underdog devices -- such as subversion of the others message.