Dr James Coyne tackles the PACE follow-up paper

[bsw]

Damn, James is on fire.

I really hope a debate happens. Probably won't, but it would be so much fun to vicariously verbally bitch slap those supporting PACE.

 

[adreno]

Coyne's blog reposted on medicalxpress:

http://medicalxpress.com/news/2015-11-fatal-flaws-pace-chronic-fatigue.html

 

[Sasha]

Coyne's blog reposted on medicalxpress:

http://medicalxpress.com/news/2015-11-fatal-flaws-pace-chronic-fatigue.html

Brilliant - just posted there about the petition. My comment is held in moderation.

 

[Sidereal]

Omg, Jim Coyne has been on fire, slaying quacks all over twitter today, decimating everything in sight.

 

[barbc56]

Wow, just wow! Good for him.

Barb

 

[Sidereal]

Man, he is sharp, fearless, eloquent, intelligent. A great ally, ladies and gents.

 

[WillowJ]

"interesting why you were silent when" is a very, very good comment.

This is not ok whether it happens to us or anyone else, and people should speak up. They sometimes do for others, but very rarely for us.

 

[eafw]

Links to the two Spectator articles just in case they decide to pull them

https://archive.is/LRIKy
https://archive.is/y23xS

Hardman and her editor (Fraser Nelson) same old complaining about abuse. Wesseley cheers Hardman on as she takes his line of "mental health stigma" and "just trying to help the poor ungrateful patients/terrorists/trolls"

Actual quote from Isabel Hardman's article

"There are also some campaigners who furiously reject the idea that cognitive behavioural therapy might help, as this implies that CFS is a psychological condition. This is quite offensive to anyone with a mental health problem, given mental illnesses can be as debilitating as physical ones,"

Nasty, dirty tactics.

 

[eafw]

Have tried to post on James Coyne's blog but doesn't seem to work. Here's a slightly edited version:

Thank you for your analysis of the PACE paper.

1) you ask about CBT/GET in the UK. As others have said this is the main "treatment" we are pushed towards here, but it is worth adding that a diagnosis of CFS will affect all our interactions with the NHS. Hospital consultants, physios - even when dealing with non-ME issues - will immediately go down the CBT/GET/psychological route. This has yet more damaging effects for patients who are often blocked from getting other care they need.

2) A whole other layer to the mistreatment of ME sufferers in the UK is the role of the Science Media Centre and associated parties. In fact I'd say the ME story is not complete without an understanding of this. A quick overview:

Wessely has strong links, as do most of the biopsychosocial crew. (White, Chalder, Miller and others) They, and Sense about Science do a lot of the dirty work in the press, not just pushing how wonderful PACE and CBT is, but slandering people with ME as violent and abusive. Then Sharpe (the author of the latest PACE paper) and the rest can try and take the high ground "oh but of course that's not what we're saying ... we're just trying to help", or the continual attempts to have ME advocates running round condemning this so-called abuse rather than sticking to the point of condemning the horribly flawed research, and subsequent damage done to those of us with the condition.

We see the same pattern every time anything relating to PACE is released.

Not sure if you are aware but back in Jan/Feb this year another(flawed) paper was put out by the PACE researchers,

http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00069-8/abstract (Chalder from KCL the lead on that one).

Similar mainstream press coverage again. CBT-GET is a cure/ ME sufferers are fearful of activity ... and abusive. It is a relentless campaign, and the whole thing needs dragging out into the daylight.

http://www.telegraph.co.uk/news/sci...chronic-fatigue-syndrome-say-researchers.html

http://www.theguardian.com/society/...ients-fear-exercise-hinder-treatment-study-me

there were some very good responses published on the Lancet website, but not to a wider audience.

http://www.bmj.com/content/350/bmj.h227/rapid-responses (can particularly recommend that you read this)

Thanks for reading, and hope that if there are any other ethical journalists and practioners out there they will start making a bit more of a noise about this whole debacle too.

 

[Sasha]

You might be able to post on his next blog, @eafw - I posted once on his first and it didn't let me post a second without doing something I didn't understand.

 

[eafw]

You might be able to post on his next blog, @eafw - I posted once on his first and it didn't let me post a second without doing something I didn't understand.

Thanks Sasha, I might have another go later.

 

[Sasha]

Thanks Sasha, I might have another go later.

Actually you could email him too - he tweeted his email address a few days ago:

citizenscientist2016@gmail.com

He was asking for volunteers for something specific so let's not abuse it but this is valuable info, @eafw.

 

[Scarecrow]

Here we go...

James C.Coyne ‏@CoyneoftheRealm 14 mins14 minutes ago
SMILE #MECFS study registered years after randomization started, excellent example of junk science.http://www.trialsjournal.com/content/14/1/415/abstract…

• 

7:43 a.m. - 3 Nov 2015 · Details

 

[Bob]

Wow, if he's getting stuck in to SMILE, this is great news! He'll love the idea of positive-thinking, or brain-washing, or faith-healing as a medical treatment!

 

[Scarecrow]

Wow, if he's getting stuck in to SMILE, this is great news! He'll love the idea of positive-thinking, or brain-washing, or faith-healing as a medical treatment!

...........for children. You forgot that bit.

 

[Sidereal]

Have tried to post on James Coyne's blog but doesn't seem to work. Here's a slightly edited version:

Thank you for your analysis of the PACE paper.

1) you ask about CBT/GET in the UK. As others have said this is the main "treatment" we are pushed towards here, but it is worth adding that a diagnosis of CFS will affect all our interactions with the NHS. Hospital consultants, physios - even when dealing with non-ME issues - will immediately go down the CBT/GET/psychological route. This has yet more damaging effects for patients who are often blocked from getting other care they need.

2) A whole other layer to the mistreatment of ME sufferers in the UK is the role of the Science Media Centre and associated parties. In fact I'd say the ME story is not complete without an understanding of this. A quick overview:

Wessely has strong links, as do most of the biopsychosocial crew. (White, Chalder, Miller and others) They, and Sense about Science do a lot of the dirty work in the press, not just pushing how wonderful PACE and CBT is, but slandering people with ME as violent and abusive. Then Sharpe (the author of the latest PACE paper) and the rest can try and take the high ground "oh but of course that's not what we're saying ... we're just trying to help", or the continual attempts to have ME advocates running round condemning this so-called abuse rather than sticking to the point of condemning the horribly flawed research, and subsequent damage done to those of us with the condition.

We see the same pattern every time anything relating to PACE is released.

Not sure if you are aware but back in Jan/Feb this year another(flawed) paper was put out by the PACE researchers,

http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(14)00069-8/abstract (Chalder from KCL the lead on that one).

Similar mainstream press coverage again. CBT-GET is a cure/ ME sufferers are fearful of activity ... and abusive. It is a relentless campaign, and the whole thing needs dragging out into the daylight.

http://www.telegraph.co.uk/news/sci...chronic-fatigue-syndrome-say-researchers.html

http://www.theguardian.com/society/...ients-fear-exercise-hinder-treatment-study-me

there were some very good responses published on the Lancet website, but not to a wider audience.

http://www.bmj.com/content/350/bmj.h227/rapid-responses (can particularly recommend that you read this)

Thanks for reading, and hope that if there are any other ethical journalists and practioners out there they will start making a bit more of a noise about this whole debacle too.

Some blogging platforms stick your comment in the spam filter if you post too many links, usually more than 2. This might be the reason why you can't post (or it could be something else entirely).

 

[Sidereal]

Here we go...

James C.Coyne ‏@CoyneoftheRealm 14 mins14 minutes ago
SMILE #MECFS study registered years after randomization started, excellent example of junk science.http://www.trialsjournal.com/content/14/1/415/abstract…

• 

7:43 a.m. - 3 Nov 2015 · Details

Legend. I wish we'd had this man on our side back in 2011 when the main Lancet paper came out.

 

[Scarecrow]

Legend. I wish we'd had this man on our side back in 2011 when the main Lancet paper came out.

Though I have to admit that I don't know why its a transgression to randomise a feasibility study before registration. When else are you going to do a feasibility study?

Edited to add: Is it because they've biased the full trial by not starting from scratch?

 

[Esther12]

Though I have to admit that I don't know why its a transgression to randomise a feasibility study before registration. When else are you going to do a feasibility study?

I was a bit unsure on this.

Isn't the feasibility study being rolled in to the actual study? ie: They're doing a bit first, seeing how that went, then doing the rest. (I never understood what was going on here - I must have missed something. That sounds loopy).

Also, did seem dodgy how SMILE decided to change primary outcome after seeing results from the preliminary study.

So many weird things about SMILE. I think it's entered Phil Parker's loopy approach to life.

 

[Sidereal]

Though I have to admit that I don't know why its a transgression to randomise a feasibility study before registration. When else are you going to do a feasibility study?

It's still an RCT, even if it's only a pilot. You're supposed to register it before you begin enrolling patients.