#MEAction petition: MISLEADING PACE CLAIMS SHOULD BE RETRACTED

[Sasha]

@JAH (or @Woolie?) - James Coyne is giving this talk in Edinburgh on Monday and he's talking about how the conversation about ME/CFS is going to change.

 

[JAH]

@JAH (or @Woolie?) - James Coyne is giving this talk in Edinburgh on Monday and he's talking about how the conversation about ME/CFS is going to change.

Awesome, thank you.

 

[TiredSam]

He also tweeted this: Any journalists so inclined, encouraged to label #MECFS community "vexatious" while they can. Option expires Monday, November 16 at midnight

Does this mean something? An announcement coming on Monday, or is he just throwing that date out there?

Best case it means he's got so much vexation lined up for the pace authors and journalists who have perpetrated this fraud that they won't be able to get away with petty name-calling any more. Hopefully more vexation coming from reputable and respected members of the scientific / medical / research community. What a splendid job he's doing.

In accordance with one of his latest tweets

Although previously abused, the "vexatious" #MECFS community must accept winning with dignity and be forgiving.

I have been practising my most dignified and forgiving demeanour in the mirror. It's not easy, It looks more like smug and vindictive at the moment, but I'll keep practising and maybe I'll get there. Maybe trying on a gown would help, so that my vanquished opponents may touch the hem of it.

 

[daisybell]

Forgiving is fine for those who have not orchestrated this whole sorry affair. I understand entirely that people have been fed a pack of lies and twisted facts. But, personally, I will have a very hard time forgiving the people who deliberately misled and maligned. People have been dying in despair. I don't see that their actions should be forgiveable.

 

[Valentijn]

I have been practising my most dignified and forgiving demeanour in the mirror. It's not easy, It looks more like smug and vindictive at the moment, but I'll keep practising and maybe I'll get there.

Are you at or more of a ?

 

[TiredSam]

Are you at or more of a ?

I must admit, smug comes more naturally to me, but I'm working on being more angelic. It's a work in progress that seems to be taking a lifetime, I'll keep at it though.

 

[ScottTriGuy]

Forgiving is fine for those who have not orchestrated this whole sorry affair. I understand entirely that people have been fed a pack of lies and twisted facts. But, personally, I will have a very hard time forgiving the people who deliberately misled and maligned. People have been dying in despair. I don't see that their actions should be forgiveable.

Yes, a divide and conquer (for lack of a better term atm) approach is prudent:

Divide those that were lied to, from those that perpetrated the lies.

The former are now our allies, the latter to mutually conquer.

 

[SOC]

Forgiving is fine for those who have not orchestrated this whole sorry affair. I understand entirely that people have been fed a pack of lies and twisted facts. But, personally, I will have a very hard time forgiving the people who deliberately misled and maligned. People have been dying in despair. I don't see that their actions should be forgiveable.

I imagine we're all in the same place. I don't think most people are suggesting we forgive and forget where the perpetrators of the lies and harm are concerned.

Perpetrators who want to be forgiven are going to have to demonstrate, in a big way, both their change of heart and willingness to do whatever repair can be done at this late date. I can't forgive those who don't want to be forgiven because they don't believe they did anything that needs forgiving. I can move on and put them behind me, but imo an unwillingness to acknowledge the harm they've done will lead to them continuing to do harm.

While theoretically there's a scenario where I see the possibility of forgiving White, Wesseley, Crawley, and the rest of the crew, realisticly I don't see them willing to do what is necessary to show their sincere regret and do what they can to repair the damage. The best I'm hoping for is that they are forever removed from the world of ME/CFS and that they are not allowed to abuse any other vulnerable population in the future.

As for journalists, people like Goldacre, and the average GP... well, if they're willing to say they're sorry, they were taken in by the perpetrators of the BPS School of Lies but now they know better and won't denigrate PWME anymore, I'm willing to forgive and move on.

 

[burgeo10]

So glad to see the petition reach 10k likes! However I fear it is beginning to stall out. This needs to be just the beginning! Meaction.net and its wonderful people have given us a platform for real change, but its up to us to achieve it. We need to get signatures in whatever way possible, tell everyone you know! Share on Facebook, instragram, twitter if you have them. Ask friends and family to help out. Now is our chance for change, lets not let it pass us buy.

 

[SB_1108]

So uh... What's the status of this? Was the petition delivered somewhere? To the Lancet?

 

[Sasha]

So uh... What's the status of this? Was the petition delivered somewhere? To the Lancet?

I think it's waiting on some other stuff...

@searcher?

 

[searcher]

We are working with some researchers and charities in the UK on delivery plans. More to come very soon, I promise.

 

[SOC]

And the signatures are still coming in at a pretty clip.

 

[searcher]

Exactly-- every signature increases the potential impact, so it still helps to sign!

 

[Sasha]

Yep, 10,600 now!

And of course there's this lovely new one, that will pile on the pressure from a new angle. Main thread here.

 

[Sasha]

It's made it into the world now!

http://forums.phoenixrising.me/inde...ace-petition-makes-wall-street-journal.43520/