Rod's back! Coverage in The Spectator, 2nd November

[Scarecrow]

Do you want me to change it? I thought it had a nice ring...

Sorry. No criticism intended. Just meant that it might not have been obvious to Charles that there was an existing thread when he started his. Your title is fine.

 

[charles shepherd]

Isabel Hardman has just replied to this email

I have asked her if I can publish her reply

Dear Ms Hardman

Re: http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/

I would be very happy to also speak to you about the position that The ME Association takes on the PACE trial, CBT, GET etc

You may find it helpful to look at our press statement on the PACE trial, which has been quite widely used:
http://www.meassociation.org.uk/201...for-chronic-fatigue-syndrome-28-october-2015/

It's also worth reading the comments below from one of a growing number of well respected researchers and clinicians who take an equally critical view of the PACE trial

Having worked in hospital psychiatry, I know that mental illness is just as real and horrible as physical illness

There is no intention to denigrate psychiatric illness

Our dispute is with an influential group of psychiatrists and their views on the causation and management of this illness

The key point we are making is that ME/CFS is NOT an homogenous condition - so adherence to a very simplistic psychosocial model of illness causation (ie abnormal illness beliefs and behaviour + deconditioning) and management has meant that biomedical research not been given the priority it deserves.

As a result, far too many people with ME/CFS are being/have been given a treatment that is either ineffective (ie CBT) or even harmful (ie GET).

If you have time, please also have a look at this report from the most recent Research Collaborative conference that was held in Newcastle last month - as it does paint a very different picture to the psychosocial model of causation and management:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Regards

Dr Charles Shepherd
Hon Medical Adviser, MEA

Tel: xxxx

Comments from Prof Jonathan Edwards, UCL:


I would like to put on record a summary of the reasons why I think the PACE trial is valueless, in the light of the recent follow up publication. I am happy to have this summary quoted or reproduced in any public medium.


PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is.


The only possible mitigation of this flaw would be if:

1. There were no acceptable alternatives to a subjective primary outcome measure, and

2. The authors fully understood the nature of the flaw and the reasons why it is so serious, and

3. The authors were meticulous in trying to avoid all forms of bias that are likely to arise from the flaw.


It has been apparent from the outset that alternative objective endpoints were available. These might not be ideal in a blinded study (the blinded Norwegian rituximab study chose a subjective end point for preference) but an objective primary endpoint would have been practical. The objective endpoints in PACE used as secondary measures tended to show no difference in outcome.


The authors (and colleagues) have repeatedly indicated in public that they do not understand the flaw in the PACE trial design, as made clear by claims that the study is ‘robust’ and of high design quality. Moreover, the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias. (The details are well documented but are secondary to the main problem.)


The recent follow up study may be of some use in confirming the sensible conclusion to draw from the objective measures used in PACE – that it provides no evidence for any benefit from CBT or GET. It strengthens the case by suggesting that at longer term follow up even the subjective measure differences disappear. It also highlights again the authors’ lack of understanding of trial design problems. Moreover, as outlined by Dr James Coyne, it provides further evidence for the authors’ tendency to continually introduce bias in their analysis, apparently through a lack of understanding of basic data interpretation and statistics. One might expect errors of this sort from a clinical trainee, but not from a professional research team.


I am surprised and troubled that clinical and research colleagues in the ME/CFS field have said so little about the problems with this study. It has been left to David Tuller and James Coyne to raise the issue again. Regardless of other issues relating to the illness (that have been grossly misrepresented in the popular media recently) it needs to be recognised and agreed that the PACE study is not a suitable evidence base for clinical practice guidelines.


Jo Edwards

Professor Emeritus, Dept Medicine, UCL

 

[worldbackwards]

Sorry. No criticism intended. Just meant that it might not have been obvious to Charles that there was an existing thread when he started his. Your title is fine.

I'll add a bit to it, should solve all problems

 

[charles shepherd]

Isabel Hardman has said that I can publish her reply:

Dear Charles.

Thanks for this. My intention was to help ME patients by debunking what I thought was an appalling misreporting of the Lancet Psychiatry paper by the a Telegraph and a response to my own colleague Rod Liddle. I didn't want his to be the last word on the matter.

I understand the disputes over the PACE trial and tried to set those out. My point about mental health was quite clearly followed with a point about the exasperation that many sufferers feel with people still telling them their illness is "all in the mind".

I'd had some helpful discussions with Action for ME in the past few months as I was keen to write more about issues that sufferers face such as benefit tests and social care.

I was more than happy to add a PPS with further points from some very pleasant campaigners who I spoke to.

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

Best wishes

Isabel Hardman
Assistant Editor
The Spectator
www.spectator.co.uk/coffeehouse

 

[charles shepherd]

Isabel Hardman has just replied to this email

I have asked her if I can publish her reply

Dear Ms Hardman

Re: http://blogs.new.spectator.co.uk/20...ed-that-me-is-not-actually-a-chronic-illness/

I would be very happy to also speak to you about the position that The ME Association takes on the PACE trial, CBT, GET etc

You may find it helpful to look at our press statement on the PACE trial, which has been quite widely used:
http://www.meassociation.org.uk/201...for-chronic-fatigue-syndrome-28-october-2015/

It's also worth reading the comments below from one of a growing number of well respected researchers and clinicians who take an equally critical view of the PACE trial

Having worked in hospital psychiatry, I know that mental illness is just as real and horrible as physical illness

There is no intention to denigrate psychiatric illness

Our dispute is with an influential group of psychiatrists and their views on the causation and management of this illness

The key point we are making is that ME/CFS is NOT an homogenous condition - so adherence to a very simplistic psychosocial model of illness causation (ie abnormal illness beliefs and behaviour + deconditioning) and management has meant that biomedical research not been given the priority it deserves.

As a result, far too many people with ME/CFS are being/have been given a treatment that is either ineffective (ie CBT) or even harmful (ie GET).

If you have time, please also have a look at this report from the most recent Research Collaborative conference that was held in Newcastle last month - as it does paint a very different picture to the psychosocial model of causation and management:
http://www.meassociation.org.uk/2015/10/global-mecfs-research-22-october-2015/

Regards

Dr Charles Shepherd
Hon Medical Adviser, MEA

Tel: xxxx

Comments from Prof Jonathan Edwards, UCL:


I would like to put on record a summary of the reasons why I think the PACE trial is valueless, in the light of the recent follow up publication. I am happy to have this summary quoted or reproduced in any public medium.


PACE is valueless for one reason: the combination of lack of blinding of treatments and choice of subjective primary endpoint. Neither of these alone need be a fatal design flaw but the combination is.


The only possible mitigation of this flaw would be if:

1. There were no acceptable alternatives to a subjective primary outcome measure, and

2. The authors fully understood the nature of the flaw and the reasons why it is so serious, and

3. The authors were meticulous in trying to avoid all forms of bias that are likely to arise from the flaw.


It has been apparent from the outset that alternative objective endpoints were available. These might not be ideal in a blinded study (the blinded Norwegian rituximab study chose a subjective end point for preference) but an objective primary endpoint would have been practical. The objective endpoints in PACE used as secondary measures tended to show no difference in outcome.


The authors (and colleagues) have repeatedly indicated in public that they do not understand the flaw in the PACE trial design, as made clear by claims that the study is ‘robust’ and of high design quality. Moreover, the authors have not been meticulous in trying to avoid bias that might arise. On the contrary they appear to have acted in ways more or less guaranteed to maximise bias. (The details are well documented but are secondary to the main problem.)


The recent follow up study may be of some use in confirming the sensible conclusion to draw from the objective measures used in PACE – that it provides no evidence for any benefit from CBT or GET. It strengthens the case by suggesting that at longer term follow up even the subjective measure differences disappear. It also highlights again the authors’ lack of understanding of trial design problems. Moreover, as outlined by Dr James Coyne, it provides further evidence for the authors’ tendency to continually introduce bias in their analysis, apparently through a lack of understanding of basic data interpretation and statistics. One might expect errors of this sort from a clinical trainee, but not from a professional research team.


I am surprised and troubled that clinical and research colleagues in the ME/CFS field have said so little about the problems with this study. It has been left to David Tuller and James Coyne to raise the issue again. Regardless of other issues relating to the illness (that have been grossly misrepresented in the popular media recently) it needs to be recognised and agreed that the PACE study is not a suitable evidence base for clinical practice guidelines.


Jo Edwards

Professor Emeritus, Dept Medicine, UCL

Isabel Hardman has said I can publish her reply:

Dear Charles.

Thanks for this. My intention was to help ME patients by debunking what I thought was an appalling misreporting of the Lancet Psychiatry paper by the a Telegraph and a response to my own colleague Rod Liddle. I didn't want his to be the last word on the matter.

I understand the disputes over the PACE trial and tried to set those out. My point about mental health was quite clearly followed with a point about the exasperation that many sufferers feel with people still telling them their illness is "all in the mind".

I'd had some helpful discussions with Action for ME in the past few months as I was keen to write more about issues that sufferers face such as benefit tests and social care.

I was more than happy to add a PPS with further points from some very pleasant campaigners who I spoke to.

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

Best wishes

Isabel Hardman
Assistant Editor
The Spectator
www.spectator.co.uk/coffeehouse

 

[jimells]

The thing is, journalism school is supposed to teach you not to simply trust information you are given but to look for other perspectives. Even including if the information is from well-regarded sources.

I'm not sure this is relevant, but a journalism professor I used to know told me that most journalism school students are there to learn how to be a public relations hack, as opposed to learning to be a journalist. I suspect he was correct: I audited a labor law class at Drake University, and I was the only "labor" person there - everyone else was learning to be a "Human Capital" manager.

Because no good journalist is a one-source writer. Any writer, even a non-professional, knows you don't use only one source and take whatever it says as the absolute truth. That's regurgitation, not writing.

I recall a few years ago when Stephen Colbert was the keynote speaker at the White House Correspondents Dinner, and he called them all "stenographers", for obvious reasons. I thought it was funny as hell. The White House reporters didn't.

Americans don't consider Harvard or Yale or Stanford publications to be inarguable. It's about the quality of the person or the argument, not the title or the name.

What's with all this deference to self-proclaimed authorities?

I dare say Americans are brainwashed from an early age to worship anyone and anything related to Harvard, Yale, etc. "Appeal to authority" is very important to "authorities" who wish to maintain their position at the top of the pyramid.

 

[lilpink]

I'm sorry, this doesn't wash. For me this smacks of 'poor me/ f**k you'. The reply is indefensible given the original article. She is supposed to be a hard bitten journalist isn't she? If this is her 'hard bitten' then she better well hope she doesn't get ME as she won't be able to cope. I worry that her view of ME has been coloured by AfME which is unlikely to be accurate (imo).

 

[eafw]

Isabel Hardman has said I can publish her reply:

And her reply is that despite how important this is to her, and despite the facts of the case - very nicely set out by yourself and Prof Edwards - she's going to run off and sulk becasue she can't bear that anyone might have responded to her appaling hit-piece in anything other than a 100% perfectly grovelling tone-of-voice.

No credibilty, at all.

 

[Jonathan Edwards]

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

It seems that Isabel Hardman doesn't really get it after all and does not want to get involved with real scientific argument. There will be others. And maybe she will realise next time that she is out of her depth here.

 

[Jonathan Edwards]

Is it not peculiar that for people with psychiatric illness like paranoid schizophrenia you cannot go around complaining that they are harassing you but for ME you can? - because they have a, er... , an illness based on irrational beliefs that needs treating with psychotherapy.

 

[Snow Leopard]

Is it not peculiar that for people with psychiatric illness like paranoid schizophrenia you cannot go around complaining that they are harassing you but for ME you can? - because they have a, er... , an illness based on irrational beliefs that needs treating with psychotherapy.

I think journalists are genuinely afraid of people with mental illnesses like schizophrenia, and perceive that writing about such might provoke more violence.

ME not so much.

 

[eafw]

Hence NICE isn't based on PACE, and will probably need to be brought down separately.

PACE is used by practitioners to justify the NICErecommendations for GET and CBT as treatments for the condition. The whole rotten edifice needs to come down, and I agree it will be many lines of attack as it won't crumble on its own, many parts have taken root as self-sustaining entities now.

 

[Keela Too]

We - the ME community - are not a single entity. So we cannot be policed in the way Isabel suggests when she says that her feed back should be useful.

Anyone can make trouble with comments. Indeed there is nothing to stop those who just hate anyone-who-is-ill from firing off comments as if from ME patients to cause general trouble.

It is not easy to both, get our voices heard, and to have all those voices behaving as roll models of politeness and decorum!

Ah well - hopefully she has listened to some of those who communicated with her politely and her views will be more understanding of the real situation in future.

 

[Snow Leopard]

I'd just like to say thanks to Tom and Charles and others who managed to have a civil conversation with Isabel and led to the article being changed.

The thing is, journalism school is supposed to teach you not to simply trust information you are given but to look for other perspectives. Even including if the information is from well-regarded sources.

Yet poor quality science reporting seems to be the norm (regardless of topic), rather than the exception.

 

[Wildcat]

.
@Snow Leopard ..... If journalists are genuinely afraid - why do they persist in writing inflammatory articles on ME? So often (in the UK national press, over decades) an inflammatory article on ME, containing misinformation on the disease and derogatory towards the patients, is followed by a second inflammatory article complaining that ME patients had written to the journalist to correct their misinformation. Its a trick, and the journalists get to denigrate and demonise the patients, while the journalist manouvers themself into the role of victim.

 

[A.B.]

Is it not peculiar that for people with psychiatric illness like paranoid schizophrenia you cannot go around complaining that they are harassing you but for ME you can? - because they have a, er... , an illness based on irrational beliefs that needs treating with psychotherapy.

ME has been portrayed as moral failure. Sharpe might say "it's not a mental illness but psychotherapy and exercise can help people recover" but the message between the lines is "it's entirely psychological but we cannot openly say so". I think Sharpe knows exactly what he is writing.

The belief in the moral failure of the ME patient then leads to various derogatory remarks and some idiots thinking they need to teach patients a lesson.

 

[Gijs]

They are looking for an excuse to stop the debate about CFS. They are not used to get so much resistance. In this new internettime we're living in there are always indiscriminate people. If you can't take the heat stop being a journalist. That said; i don't like abuse or harassement. But from the view of some terrible sick patiënts i can understand it. What about therapists and pyschologists saying to very ill patiënts they are not ill and must exercise? It sounds to me as severe abuse!

 

[Esther12]

Isabel said:

I'd had some helpful discussions with Action for ME in the past few months

I'm now not surprised she wrote such a poor article. [edit: And thought she was being "supportive"!] It would be great if @Action for M.E. were a bit less rubbish.

She claimed:

I understand the disputes over the PACE trial and tried to set those out.

I'm not sure that she does understand.

 

[Bob]

However the abusive response I received from others is enough for me to wish you all the best of luck in finding other sympathetic journalists who are willing to write about this illness. It is an issue very close to my heart and yet I wonder whether there is any point in trying to stick up for people who I desperately want to help when of all the controversial issues I cover, this one elicits such a response. I hope that this is as useful feedback from me as yours has been.

And her reply is that despite how important this is to her, and despite the facts of the case - very nicely set out by yourself and Prof Edwards - she's going to run off and sulk becasue she can't bear that anyone might have responded to her appaling hit-piece in anything other than a 100% perfectly grovelling tone-of-voice..

Yep, I very much agree. I'm disappointed with the reply. There doesn't seem to be much self-awareness or insight into the wrong that the spectator has carried out. It's all about the patients.

Coyne found a good quote in this tweet that he retweeted:

A brilliant German word: "verschlimmbessern," which means 'to make something worse by trying to improve it'. Happens everyday everywhere.

https://mobile.twitter.com/Richard56/status/661497035594575872

 

[Bob]

I tried to post this on Harman's comments:

Dear Isabel,

I am afraid even you have got it wrong. I am a retired professor of medicine at UCL and have a lot of experience with designing therapeutic trials. The PACE trial is completely valueless because it breaks the most basic rule of reliable trial design - it is unblinded and has subjective end points. Ask any trials designer and they will tell you this is a waste of time. The fact that Oxford University is involved means nothing - there are people who do not understand what they are doing in all major universities.

The reason the patients are vociferous is that they are being forced to accept very poor science. If I Had ME and realised just how bad this trial is I would be spitting blood as well. This is the Emperor with No Clothes in Spades. Just sit next to a professor of clinical pharmacology at dinner sometime and ask about this trial - it is about time the psychiatry profession realised they can no longer get away with this sort of rubbish..

And don't forget, Jonathan, that not only is the methodology bad, but the results for all the outcomes (objective and subjective) are now null! (Or not clinically useful for the walk test after GET.)