New poor Guardian article "ME and the perils of internet activism" 28th July 2019

This is a good summary of the extent of Sharpe and Wessely's bullying:

https://twitter.com/user/status/1155509391929593857


This is being "silenced" by people who literally cannot use any other medium than the Internet to protest mistreatment, often too sick to even feed themselves. Of course the advocacy is mostly on the Internet, for the same reason paraplegics don't protest on the top floor of a building with no elevators. Those are still our words and they amount to sick people begging for help.

This stuff is not normal. It's abusive to the point of obsession and the purpose is entirely spiteful and intimidating.

 

The lack of mention of Robert's work infuriates me. Same with Alem. Complete erasure of people who did real good for a serious cause. And no mention of the publicly available, and easy to find, discussions that make it clear the issues with Cochrane are taken seriously on substance and have in no way been refuted.

Somehow managing to make taking a "highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws" as a bad thing is really something.

 

Im not buying that either, you are just one of those former HIV campaigners. Shame on you.

 

This is excellent ; please can you send it to the guardian editor and strongly suggest that they publish it?!

 

"Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed."

That is the most worrying thing about the article and if its true its clear he is inside some kind of inner circle that "gets informed of things first", in other words they manoeuvre the narrative their way and make it happen. They don't wait for decisions to change and then hear about them, they tell people they will be changed.

That's how they are always in the know first.

 

Yes. I think this must be the case. Sharpe would not put out this stuff if he was not worried but, like the Health Research Authority whitewash, this looks like a response to what he sees as another little victory - sorting out Cochrane.

It is this sort of shenanigans that I will be raising with the NICE committee.

 

It must be unusual for a new editor to take the first opportunity to lose all credibility. You would think they would like to break themselves in slowly.

 

I am not sure I would wish to push that analogy too far.

 

The Guardian also has a long history of trivialising ME and mocking ME patients.

 

I really don't understand why this is the case. As a generally left leaning publication it champions the underdog. We are about as underdog as you can get: poor, on benefits and with no treatment, and having to convince everyone from Doctors to relatives, and loved ones, how sick we are, time and time again.

 

Thank you. Fixed.

 

I suspect that complaints will be viewed through a filter of bigotry at the Guardian, so would encourage anyone complaining to be very careful and cautious with the language used.

They have an editorial code here, and that seems to explain what people are able to complain about:

https://www.theguardian.com/info/2015/aug/05/the-guardians-editorial-code

edit: Sorry - just saw this was already linked to.

 

The left love philosophy, psychiatry and psychology so they are prone to BS on such things. The left still have a hierarchy even if they are "of the people" workers at the bottom and controllers at the top who know whats best for the people in the utopia of a leftist world. Doesn't history show that ?

Doesn't the extreme left throughout the whole of history have just a bad a record as the extreme right?

When you have private run newspapers, which must happen in a democracy, not overseen by the interests of the public you have just as many problems on the left as you do on the right.

When you are high up one side of any partisan group you go to YOUR propaganda outlets to put out your truth via yours and your mates collective newsletter.

The Guardian just as any media outlet doesn't have any legal obligation to be accurate in their reporting.

Its really as simple as that.

 

I have bias and a potential COI - I am a person who'd quite like to get better, apparently this puts me in conflict with various people who, by their positions, words, and actions, are actively working to prevent me from doing so.

I would imagine most other pwME have the same bias/COI for themselves, and as most 'patient lobby groups', apart from AfME obviously, share the same aim they represent members with the same bias/COI.

I'd be interested in knowing who, or where, it is necessary to declare this to make CG happier.

Coz I'll happily do so.

If it doesn't involve payment, as I have no 'spare' money, due to the direct actions and advice of those she supports, and as long as it doesn't involve traipsing anywhere, as contrary to her, and the people she supports, stated beliefs, I have a condition/disease that prevents that on pain of symptom exacerbation.

ETA - post written as a reply to a post above which now seems to have disappeared where a tweet was quoted from CG saying we should declare our CoI's if we are calling for the BPS mob and supporters to declare theirs.

This may be the tweet - if I can figure out how to insert it.

https://twitter.com/user/status/1053612177272246273

 

I think it's this combined with what @Esther12 first said, it's a very effective narrative. Internet activists disrupting the efforts of humble, well-meaning psychologists.

What a wild, entertaining article.

I burst out laughing. How can anyone take this crap seriously? You can just tell the guy didn't even bother reading the PACE research or Tuller's blogs because he doesn't bother to address specific criticisms or counter-arguments.