"No Dissing! NH Choices Behind the Headlines needs to repair relationship with its readers" - Coyne

[Kyla]

http://linkis.com/wordpress.com/3HQYD

excerpt:

A later blog post will compare Behind the Headlines account to my critique of the PACE study. But in this one, I’m going to cover an offensive “box” in the Behind the Headlines that was amplified in the gloating comments of the journalist on Twitter and in the comments section of the Mental Elf blog. I then note that in 2014 he had made offensive comments that should have been actionable by Behind the Headlines.

 

[Valentijn]

I left a comment, which I think had to be approved, though that happened quite fast:

A very thought-provoking article, especially with the parallels between the aspersions historically cast upon various other minority groups. It’s horrifying that this sort of behavior is still acceptable from the media, researchers, and most especially the National Health Service.

Regardless of who is right and wrong regarding the nature of ME/CFS (apparently the NHS reviewers can not comprehend the research involved), they should at least be fully committed to treating all patients with the utmost respect. Cheap digs like these just make the NHS look like petulant children who know they have lost the rational debate but can fall back on bullying to get their way.

Needless to say, I strongly recommend reading this article

 

[Tom Kindlon]

Thanks to James C. Coyne for his kind words in his new blog:

After all many people with CF/ME had considerable educational and professional achievement before they were laid low by their illness. And many of them continue to contribute to the scientific literature, as in letters to BMJ.

Here is a well-crafted, well documented example.

Links to my BMJ e-letter, "Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial": http://www.bmj.com/content/350/bmj.h227/rr-10

Lots of other people have been writing important comments, letters, etc.

 

[BurnA]

Just read this, Gerard Blair is in Coynes line of fire and I dont think he will survive long!

How pathetic to write like Blair did, think like Blair did and then tweet about it. Oh dear.

 

[Valentijn]

Just read this, Gerard Blair is in Coynes line of fire and I dont think he will survive long!

How pathetic to write like Blair did, think like Blair did and then tweet about it. Oh dear.

And even more pathetic for the NHS to let him get away with it, and keeping such flawed reviews from a blatantly biased source.

 

[Bob]

Great blog. So refreshing to have someone say that ME/CFS patients shouldn't be mocked, and to call out those doing the mocking. And so ridiculous that we're in the situation where he has to say that, and I find it refreshing!

Coyne really values page visits and comments. So please leave a brief comment if you are inclined to.

 

[BurnA]

Great blog. So refreshing to have someone say that ME/CFS patients shouldn't be mocked, and to call out those doing the mocking. And so ridiculous that were in the situation where he has to say that, and I find it refreshing!

Coyne really values page visits and comments. So please leave a brief comment if you are inclined to.

This is so true .

I mean how could it ever be acceptable to write a mocking tweet about sick people.?

And why do more people not point this out ?

What is wrong with society when it becomes trendy to make fun on Twitter about PWME.

 

[Sasha]

Coyne really values page visits and comments. So please leave a brief comment if you are inclined to.

I want to echo this - if we want James Coyne doing more of this (and we do!) we should be visiting his blog and thanking him in the comments section. You don't need to register or anything - just give a username and an email address.

Only three comments yet (including one each from me and @Valentijn).

 

[Tom Kindlon]

Coyne really values page visits and comments. So please leave a brief comment if you are inclined to.

Also consider sharing it on the internet (or praising it if you see it posted somewhere (if you like it) which can lead to more people looking at it).

 

[Valentijn]

It's up to 9 comments now, including a very nice one from someone outside of the ME community.

 

[ahimsa]

Thanks for the heads up about the article and the suggestion to write a comment.

I will try to make a comment later today. I'd like to read the article and try to at least partly understand it before I make a comment (even if it's only a generic comment).

 

[worldbackwards]

I thought it was interesting how he singled out the way a biomedical approach is always short circuited in terms of credibility. It reminds me of the way NICE appointed twenty odd proponents of CBT to the guideline draft group and then claimed "balance" because they'd put two ( count 'em!) patient reps in, who of course had exactly the same status and authority.

Another thing I come back to in terms of abuse is thinking about 19th century literature. The trope of the sickly housewife complaining of her "nerves" and being a comic figure of ridicule was a stock component of the era (I'm thinking of books by Willie Collins and Jane Austen for starters). This "whining hypochondriac" stereotype, all the better if it's a woman, has deep roots in our culture and has never really been challenged. The likes of Gez Blair only go to show how hollow the claim of "support" really is for us amongst the medical community.

And another thing (yawn). Blair saying "you can't say anything about ME and psychiatry" has a distinct the ring of the old "you can't talk about immigration" chestnut in the UK media. It's an odd business that, restricted as this line apparently is, no one ever seems to stop going on about the supposed psychiatric element of ME and no one gets taken seriously if they talk about anything else. Probably all those death threats, I'd imagine.

 

[Never Give Up]

I wonder if the "death threats" are really just a manifestation of the mental illness of those perpetuating the PACE myths.

 

[SOC]

I wonder if the "death threats" are really just a manifestation of the mental illness of those perpetuating the PACE myths.

You mean like delusional paranoia?

I dunno. I know I'm more scared to go to London where all those ME militants live than to spend time in a war zone where there's only anti-Western Taliban, suicide bombers, RPGs, and IEDS. I mean heck, given those nasty letters some of them write, the ME militants might even eventually get around to kicking over my garbage cans or something.

Death threats. [snigger] Uh huh. Show me some. It's long past time they put up or shut up.

 

[Valentijn]

I wonder if the "death threats" are really just a manifestation of the mental illness of those perpetuating the PACE myths.

I think it's more a matter of pre-emptively justifying their own petty and bullying behavior. "Someone's going to react by threatening to kill me (if I provoke them enough), therefore it's okay to push them around beforehand."

It's just a new outlet for pseudo-academical bullies who aren't allowed to go after other marginalized classes without their friends recognizing them for the bigoted savages that they are.

 

[Sasha]

What is the address for submitting a complaint to NHS Choices about this issue?

 

[adreno]

Apparently, Blair deleted his Twitter account. He clearly didn't enjoy the heat.

 

[soti]

Another thing I come back to in terms of abuse is thinking about 19th century literature. The trope of the sickly housewife complaining of her "nerves" and being a comic figure of ridicule was a stock component of the era (I'm thinking of books by Willie Collins and Jane Austen for starters). This "whining hypochondriac" stereotype, all the better if it's a woman, has deep roots in our culture and has never really been challenged. The likes of Gez Blair only go to show how hollow the claim of "support" really is for us amongst the medical community.

Just as a by the by, since you've brought up Jane Austen... it's true that in Persuasion one of the heroine's sisters is a whining hypochondriac. On the other hand, the heroine in Mansfield Park has something a lot like mild ME-- she can't walk very far, nor stay out picking flowers in the bright sun, and it's generally understood she has a physical limitation with effects that occur after exercise and exertion.

 

[worldbackwards]

Just as a by the by, since you've brought up Jane Austen... it's true that in Persuasion one of the heroine's sisters is a whining hypochondriac. On the other hand, the heroine in Mansfield Park has something a lot like mild ME-- she can't walk very far, nor stay out picking flowers in the bright sun, and it's generally understood she has a physical limitation with effects that occur after exercise and exertion.

It was "Persuasion" I was thinking of. Although you could argue that Fanny Price is such a tedious drip that she does us no favours anyway

 

[BurnA]

Apparently, Blair deleted his Twitter account. He clearly didn't enjoy the heat.

Do you know when ?

He must be worried - good !
Still doesn't mean we can't all complain - the tweets should still exist and besides the screenshots are clear in coynes blog.