The Scientifically Challenged UK Media Strikes Back

When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre (SMC). However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity to its reporting in the press. Indeed, flawed as the PACE trial is, at no point do the researchers suggest GET or CBT cure ME, as claimed by Ms Knapton in her inaccurate and mendacious article1.

Most in the ME community are aware of the substantial problems with the PACE study, including the selection criteria, the self-reporting and lack of objective measures and a flawed methodology, all of which have been outlined in detail by various authors including Angela Kennedy, Professor Malcolm Hooper, Tom Kindlon, Jane Colby, the late Dr Elizabeth Dowsett and, most recently, David Tuller in the US. Unfortunately the UK media continues its obsession with treating ME as a non-illness, affecting lazy people whose sole problem is their inability to pull themselves together and push through their fatigue, which seems to be the only symptom the media acknowledge.

To start Knapton states:

‘Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’1.

Not a single word in that opening paragraph is accurate. The study included a large number of participants who probably did not have ME as the primary criteria for participating was fatigue. Despite this the PACE trial was only able to establish that some participants showed mild improvement while undergoing GET and CBT (though these were self-reported, subjective results). Participants remained ill and severely limited in their ability to perform normal daily activities.  To repeat, any positive results revealed by the trial were barely notable yet according to Knapton,

‘The new study found that graded exercise therapy (GET), in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact’1.

A definition of dramatic: sudden and striking, impressive3

The PACE trial in no way justifies such an adjective, a more accurate description would be, ‘a negligible impact’ though this would not have supported the slant of Knapton’s piece.

Her next paragraph aggravates matters,

‘The finding is important because many CFS sufferers believe that exercise will make their condition worse.’1

Sufferers do not believe, ME is not a religion (the proponents of the psychosocial model and their media acolytes exhibit cult-like behaviour but that’s a separate issue). ME sufferers know exercise can make their condition worse through first hand experience of the damage it can cause, something supported by scientific studies illustrating physiological damage(4,5).

Two more paragraphs in the article were particularly disturbing:

‘But gradually increasing exercise and therapy to remove patients’ negative thoughts that they would never get better seemed to work. Prof Sharpe said the study was likely to prove controversial because a “minority” believe that CFS is either caused by a virus or is chronic and cannot be alleviated.’1

In what other chronic illness would sufferers be accused of contributing to their illness due to their ‘negative thoughts’? A more clear case of blaming the patient is hard to imagine and to make such a statement with zero evidence to support it, is unworthy of an academic. Suggesting that only a minority believe a virus triggers the disease and that it is chronic is not only untrue, there has never been any suggestion that ME is an acute condition, but a use of language designed to offend ME sufferers. The following paragraph continues in the same vein,

Prof Sharpe added: “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do. If you live within your limits that becomes a self-fulfilling prophesy.”1

There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.

Another point to make, highlighted by John Cohen in Science6, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,

‘After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’5.

Sharpe et al try to explain this by claiming participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

Knapton’s article provides a list of ME symptoms, which exclude post-exertional malaise (PEM) arguably the defining symptom of the illness. It also includes a link to a video featuring Martine McCutcheon talking about the lightning process, telling you all you need to know about the malicious intent behind this article.

‘These are not magic cures’ says Sharpe. Apparently Sarah Knapton disagrees.

A final comment from Professor Sharpe:

‘It’s sometimes quite hard to understand what motivates the very vocal minority that gets upset by this apparently benign bit of moderately helpful treatment’1.

Perhaps some of the headlines in the British media this morning will enlighten the good professor as to why so many in the ME community are upset by his ‘treatment’.

 

 

1) http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html?utm_campaign=Echobox&utm_medium=Social&utm_source=Twitter#link_time=1446019914 (Accessed 28/10/2015)

2) https://uttingwolffspouts.com/2015/02/14/chronically-fatigued-the-uk-media-and-the-recently-released-iom-report/

3) http://www.oxforddictionaries.com/definition/english/dramatic (Accessed 28/10/2015)

4) http://www.ncbi.nlm.nih.gov/pubmed/23813081 (Accessed 28/10/2015)

5) http://www.ncbi.nlm.nih.gov/pubmed/25990639 (Accessed 28/10/2015)

6) http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study (Accessed 28/10/2015)

26 thoughts on “The Scientifically Challenged UK Media Strikes Back

  1. whatusernameisnottaken

    Thank you so much for taking apart this deeply flawed Telegraph article.
    Just wanted to add that the bar for “recovery” was so low in this trial that 13% of the trial patients qualified as “recovered” before ANY treatment. After the trial, “recovered” patients “were still walking at a severely disabled speed, even when they had improved the distance they could walk. If a patient who needed a heart transplant could only walk this speed due to a lung problem, they would not be allowed onto the transplant list because they would not be deemed well enough to actually survive.” according to Christopher Snell

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    1. Utting Wolff Post author

      Thanks for your comment and salient point that some who read about this for the first time may not be aware of. We chose to keep this blog post focussed on Knapton’s smear campaign, something she appears to engage in with a vengeance for reasons only known to her and possibly the SMC. The recent coverage by Tuller, in fact, the many years of excellent critique of the PACE trial by Hooper, Kennedy, Dowsett, Kindlon, Eliot-Smith, Colby and many more says it all (cf our older posts). In this particular context, we find it vital to point out that it is ethically indefensible for a science correspondent to report in such a mendacious fashion.

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  2. ahimsa

    For patients who have cognitive dysfunction and trouble reading some of these points, there are several videos which help to show what’s wrong with the PACE trial:

    1: The Pace Race

    2: 60 — The New 75

    3: Not So Bad

    4: The Force of LOGic

    You can find these and others on the MEAnalysis channel on YouTube.

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    1. Utting Wolff Post author

      Our sincerest apologies for not having ‘approved’ your valuable comments and video links until now. We had honestly not seen them before; it was indicated that there were comments ‘somewhere’ on the blog but for some reason they were hidden in some sub-folder. Thank you very much indeed for taking the trouble to upload all that and your kinds words. All the best, Claudia & Geoff

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  3. Mary Schweitzer

    Thank you so much for posting this. After having read Berkeley journalism (and public health) professor David Tuller’s excellent review of the PACE trials, to see this on the front page of the Telegraph was more than depressing.

    To what degree is the SMC (Science Media Centre), and the British mainstream media’s willingness to follow the SMC, culpable in the tragic ignorance surrounding a disease which impacts so many people? I’m glad you mentioned it. It seems (at least there ME is concerned) to serve as a mechanism for censorship and propaganda. Is there anything that can be done about it?

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    1. Utting Wolff Post author

      Mary, thank you so much for your comment. We’re looking into reporting Sarah Knapton’s article and will let you know if anything transpires. Sadly, we are not at all surprised at this response in the wake of David Tuller’s piece (Knapton’s article would have been published anyway but probably not on the paper’s front page), in fact, we predicted it the moment it was published. We realise that we are in a small minority who were not entirely happy with Tuller’s article as it failed to include essential work and significant points raised by some excellent people (who were not acknowledged, referenced or in any other valid way mentioned. Yes, hundreds of advocates do great work but we are referring to senior scientists and published researchers who put in years of their lives to resarch, debunk and analyse the notorious Wessely School of thought). We are concerned about the political and ethical implications of his publication. The short-lived enthusiasm was a given to those of us in the UK and elsewhere who have undertaken in-depth analyses of the complex situation. That said we do appreciate his ‘Will to Knowledge’ and for making such a huge effort. It is hard to witness the epistemic exclusion of brilliant minds who have made invaluable contributions but are now written out of the narrative. Here’s a link to Angela Kennedy’s statement on the issue which we fully endorse. http://porbeagle.blogspot.co.uk/2015/10/statement-regarding-series-of-articles.html

      In our view the SMC are extremely culpable, Sir Simon Wessely is back on the board of trustees for the SMC and shortly afterwards this malicious and misleading coverage appears in the British media, call us paranoid but it’s unlikely to be a coincidence.

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      1. Mary Schweitzer

        I cannot tell you how much effort it has taken me to get people in the US to understand that what happens in the UK is important. This article was SUPPOSED to go on Retraction watch, and they bailed out at the last minute, so I’m glad that at least Vince picked it up. Dave is a journalist, not a scientist. He is telling a story, and he used Tom Kindlon to tell that story. It works. It makes it very readable. I am a scholar. I would do it differently. I would cite Malcolm Hooper. But Dave is a journalist, and unless he talks with Malcolm, and figures out how to make a story out of that, Dave isn’t going to use him.

        What I think was GOOD about Dave’s article was the front material – the quotes from scientists at TOP universities saying this was crap. You may not understand how valuable it was to have this on Vince’s Columbia University virology blog (which is really popular among young scientists) and the opening quotes from scientists at top universities saying the article was crap and they couldn’t figure out how it was ever published. Columbia is Ivy League, which is our version of Oxbridge. And Stanford is up there too (though technically not Ivy League). It is incredibly valuable to have scientists from those universities siding with us. A sea change, in fact – there were always professors AT good universities who knew what was going on (such as Peter Rowe at Hopkins), but if they did “CFS” research, they risked losing their jobs. As recently as five years ago Montoya’s job at Stanford was at risk because he continued to work on “CFS”. And then Ron David, who was higher up on the food chain, became involved because of the sad situation with his son. All of a sudden, it was okay at Stanford to be working on “CFS”. I get frustrated with Lipkin sometimes, but he is at Columbia, and he is taking this all very seriously. He is not going to turn like Coffin did. Looking forward, this is all good.

        There are no national borders when it comes to internet. The SMC can censor information in the British press, but they can’t get their paws on internet, at least not yet. There are young scientists in the UK who follow Vince’s blog, and they read that post. The Wesselyite psychiatrists can run and hide behind their façades, but they can’t escape that there are young scientists who are now wondering just what WAS going on with that study, and why Lancet published it. And Lancet can hear the footsteps.

        You can’t be everything to everybody. People have their roles. David played a very useful role here. He knows more than he wrote because we have spoken often, and I forward things to him from internet (Dave’s other post on Vince’s virology blog was based on interviews with me about CDC.) I could wish he wrote more than he wrote, or I can be glad that he wrote what he did. In this case, I am glad he wrote what he did.

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      2. Utting Wolff Post author

        Thank you, Mary. I do hear you, I really do. That is why I referred to David’s article as a huge effort. I respect the virology blog, too, and I have no issue with anything you write. In fact, my impression of David’s work had always been a favourable one and I have recommended ME sufferers they read his articles. What I do have an issue with is the exclusion of Angela Kennedy’s work (the omission of Hooper is entirely incomprehensible to me). Angela did get in touch with David on several occasions, offering to discuss PACE with him as the engaged and deeply committed advocate and academic she is. While I do appreciate a good analytical narrative and understand that choices will inevitably exclude some aspects to some extent, I have difficulties accepting when essential work is written out of such narratives. Angela’s work is far too valuable to be dismissed, but that is exactly what happened. To ignore essential knowledge for whatever reason astounds and frustrates me. As a feminist scholar my conscious choice is not to accept silencing where I see it taking place so I withhold that David should have listened, especially as he is, as you point out yourself, in a powerful position to exercise some influence. That said, the series of articles was still a huge effort but the pragmatist in me, normally so amenable to compromise for the greater good, remains adamant that exclusion of essential knowledge is unacceptable.

        I should emphasize that Geoff and I don’t speak with one voice on this as he is more positive about Tuller’s article than I am.

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  4. tipsforme

    I see on twitter some people are trying to hold on to the “no publicity is bad publicity” saying. This could be true, for example impetus to get lots of signatures for the MEaction retract PACE petition. I’m inclined to think it’s better no one’s talking about it than perpetuating these damaging myths.

    It reminded me of an article I read about blog writing though and getting negative comments. It suggested that the negative comments are precisely the ones you want to keep because they generate further energy and response. The cynic in me wonders whether journalists are fully aware that an unbalanced article in this area is likely to get a huge response. Are they relying on “no publicity is bad publicity”?

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  5. Utting Wolff Post author

    I think we could have done without this particular publicity, especially as a lot of people will just read the ridiculously misleading headline (not that Knapton’s article is any better). I’m sure she was aware of the response it would create and you may well be right in that as far as the Telegraph is concerned all publicity is good publicity, never mind that they’re victimising a group of powerless and extremely sick patients.

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  6. Pingback: Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study | PLOS Blogs Network

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  9. Anne Dean

    Well done Claudia & Geoff for such a good article.
    I have re-blogged it – as it says it all. Much better than I would ever be able to . . .
    But this media stuff and ignorant reporting does enormous damage to us all.
    Thank you both so much.
    Best Wishes, Anne x

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  10. deboruth

    SMC and “Wessleyites” have conquered the British press and zeitgeist by launching fierce assaults replete with bombers, tank brigades and commandos of publicity. Meanwhile ME charities at their best enter the publicity battle against them with a few old muskets, and meanwhile struggling with collaborators within.
    The work of Prof. Hooper et alia has never been backed with a properly armed publicity campaign against SMC and the “Wessleyites”; now Mathees, Tuller, Kindlon et alia are added to the ranks of valiant fighters struggling that the truth prevail but with no help from publicity commandos, army or air cover of their own.
    PWME need an ME charitable effort to properly educate Britain while battling the SMC — now more difficult with Wessely back in the saddle there. He is, after all, a publicity and lobbying whiz; that, plus whining, is how he got to be Sir Somebody Somebody without having managed any achievement whatsoever in science or medicine.
    But of course, one would not want to make a scene by fighting back, would one? Not just to save thousands and thousands of silly little lives…..

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