Our complaint against the Daily Telegraph rejected by the Press Complaints Commission

The Press Complaints Commission (PCC) has rejected a complaint from the ME Association about an article by Dr Max Pemberton which appeared in the Daily Telegraph on August 29 at the height of the ME research ‘death threats’ saga – while upholding the right of newspapers to publish commentaries that are clearly distinguished from fact.

The PCC ruling was issued on 11 November but held back by us while we checked out whether a confusing confidentiality clause attached to it was intended to have a gagging effect.

The PCC ruled that an earlier online version of the article – in which Dr Pemberton wrote that the MEA was being “disingenuous” in claiming that there had been virtually no government-funded research into the illness – and a later version which appeared in the printed paper itself, where this reference had been removed, had both conformed to its Code of Practice.

The PCC stated: “…the columnist was fully entitled to express his views and the Commission did not consider that the reasons given for this view were significantly inaccurate or misleading such as to constitute a breach of Clause 1 (Accuracy). Although it did not establish the claim represented a breach of the Code, the Commission welcomed the newspaper’s decision to remove it from the version published in the newspaper and ultimately published on the website.”

While the cause and treatment of ME/CFS remained highly contentious, both sides were entitled to express very different opinions and no “significant” inaccuracies were published, said the PCC.

The PCC noted that, while the Daily Telegraph had failed to publish any letters in response to the article in the printed edition, that did not in itself represent a breach of the Code of Practice. The selection of material for publication was a matter for the discretion of individual editors.

A PCC official confirmed to us on November 25 that we were free to publish the Commission’s decision. The confidentiality clause was used to try and protect the complaints process while complaints were under investigation.

Texts of all the relevant documents appear below.


THE ME ASSOCIATION’S COMPLAINT TO THE PRESS COMPLAINTS COMMISSION, 13 September 2011

Protestors have got it all wrong on ME

This complaint relates to the above article by Dr Max Pemberton.

The article was published on page 23 of The Daily Telegraph on Monday 29 August 2011.

The complaint relates to section 1.1 of the PCC code of practice which states that:

The press must take care not to publish inaccurate, misleading or distorted information

and section 1.2 which states that:

A significant inaccuracy, misleading statement or distortion once recognised must be corrected, promptly and with due prominence, and – where appropriate – an apology published.

SUMMARY OF COMPLAINT

As the headline to this article clearly indicates, Dr Max Pemberton is claiming that people with ME/CFS (and The ME Association in particular) are not justified in complaining about the lack of biomedical research into this illness because (in his opinion):

a) biomedical research has not produced any useful information about either cause or management

b) psychiatric research has produced a gold standard form of treatment

The article was badly researched and seriously unbalanced in that it failed to explain why people feel with ME/CFS feel so frustrated by the lack of biomedical research – as has been shown by the large number of people who have written to the paper to point out misleading or inaccurate details.

The ME Association reply concentrated on the failure of the author to refer to the fact that the Medical Research Council has fully acknowledged that our persistent complaints about the lack of biomedical research were justified and set up an Expert Group to deal with this. The MRC expert group has produced a list of biomedical research priorities and £1.5 million of ring-fenced funding to accompany the initiative.

The ME Association should, therefore, have been given an opportunity to correct the impression that we are being disingenuous over the need for biomedical research into ME/CFS.

CHRONOLOGY

On Friday 26 August the on-line edition of the Daily Telegraph published an item by Dr Max Pemberton. This is included as annex 1.

The item contained a misleading and defamatory statement relating the way in which The ME Association has campaigned for, and succeeded in obtaining, government funding through the Medical Research Council for biomedical research into the illness known as ME/CFS.

Statement relating to the MEA:

The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. This is disingenuous.

Firstly, research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, and has produced underwhelming, inconclusive results to support a bio-medical cause. It wasn’t until psychiatrists such as Prof Wessely started treating the condition as a mental illness that real progress was made.

NB: The dictionary definition of disingenuous is insincere, deceptive or misleading.

The on-line item was widely circulated around the internet but then withdrawn without explanation by The Daily Telegraph.

On Monday 29 August a similar version of the item appeared in the paper edition of the Daily Telegraph, along with a new on-line version. The paper version is included as annex 2.

In view of the clear or implied impressions that The ME Association is being disingenuous about calling for more biomedical research an ‘Intended for Publication’ letter was emailed to the Daily Telegraph the same day. This is included as annex 3.

The key point to our response was:

The ME Association criticised the lack of government funded research into the underlying cause of ME/CFS and called for a change of policy at the Medical Research Council (MRC). The result, which Dr Pemberton ignores, was the setting up of an MRC Expert Group on ME/CFS research which went on to establish a list of biomedical research priorities, along with £1.5.million of ring fenced funding. Among the biomedical research priorities identified by the group are some of the possible causes and treatments – eg immune system dysfunction through viral infection, muscle (mitochondrial) pathology and cytokine inhibition – that Dr Pemberton has wrongly concluded are of no obvious value in this complex multisystem disease.

We also made a number of other points to balance inaccurate or misleading statements in the article about the cause, classification (the WHO classifies ME/CFS as a neurological illness – not a mental illness) and management of ME/CFS.

The revised online item attracted a large number of comments – the vast majority of them being critical of points that were considered to be misleading or inaccurate. A significant number of people also wrote to the Editor.

On Thursday 1 September I phoned the letters department of the paper to enquire if our letter (or any other letter) was being considered for publication. I was informed by Ms Dorothy Brown that the MEA letter had not been received (even though it had been sent to the correct email address and had not been returned by a server) but I could send it again – which I did.

As no letters at all had been published in the period up to Wednesday 7 September I called Ms Brown again. I was informed that my letter was with the legal department but they were “too busy” to talk to me.

I was then passed to the letters editor who informed me that the paper was not going to publish any letters on the article by Dr Max Pemberton.

I informed him that I felt we should have a right of reply and that we would now pursue this matter through the PCC.

Yours sincerely

Dr Charles Shepherd
Hon Medical Adviser, ME Association


APPENDIX 1: On-line copy

Protesters have got it all wrong on ME

That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

By Max Pemberton 7:30AM BST 27 Aug 2011

It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.

Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees – all of which have been proved to be baseless – in an attempt to disrupt further work.

The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.

Symptoms of ME include extreme fatigue and muscle pain. Sufferers are often bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers who feel frustrated and angry that doctors remain sceptical that this is the actual cause.

The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. This is disingenuous.

Firstly, research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, and has produced underwhelming, inconclusive results to support a bio-medical cause. It wasn’t until psychiatrists such as Prof Wessely started treating the condition as a mental illness that real progress was made.

The current gold standard for treatment is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.

Most people are more than happy to be seen by any specialist. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. If the condition was seen as involving one more than the other, that would never be considered evidence that no one was taking you seriously, or that your welfare was undermined.

Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But just because doctors frame a condition in terms the sufferer does not like does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It’s an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesn’t mean someone is faking it; it doesn’t mean the illness does not exist. It also does not mean that people should be able simply to pull their socks up and get better, or that is under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, it’s as valid as any other.


APPENDIX 2: Paper copy

Protestors have got it all wrong on ME, Daily Telegraph, 29 August 2011

That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.

Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees – all of which have been proved to be baseless – in an attempt to disrupt further work.

The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.

Symptoms of ME include extreme fatigue and muscle pain. Sufferers are sometimes bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers, who feel frustrated and angry that doctors remain sceptical that this is the actual cause.

The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. Yet research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, which has produced underwhelming, inconclusive results to support a biomedical cause. It wasn’t until psychiatrists such as Prof Wessely started treating the condition psychologically that real progress was made.

The current gold standard for treatment, as supported by the National Institute for Health and Clinical Excellence (Nice), is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.

Most people are more than happy to be seen by any specialist – more than one if required. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. The involvement of representatives of both these specialities would never be regarded as evidence that you were not believed, or that your welfare was being undermined.

Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But, just because doctors frame a condition in terms the sufferer does not like, does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It’s an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesn’t mean someone is faking it; it doesn’t mean the illness doesn’t exist. It also doesn’t mean that people should be able simply to pull their socks up and get better, or that it’s under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, it’s as valid as any other.


APPENDIX 3: MEA letter to Daily Telegraph

INTENDED FOR PUBLICATION

Protestors have got it all wrong on ME – Dr Max Pemberton, Monday August 29th

Sir

Dr Max Pemberton does not understand the complex issues surrounding the need for biomedical research into ME/CFS – a condition which includes a wide range of clinical presentations – and has misrepresented the position of The ME Association.

The ME Association criticised the lack of government funded research into the underlying cause of ME/CFS and called for a change of policy at the Medical Research Council (MRC) The result, which Dr Pemberton ignores, was the setting up of an MRC Expert Group on ME/CFS research which went on to establish a list of biomedical research priorities, along with £1.5.million of ring fenced funding. Among the biomedical research priorities identified by the group are some of the possible causes and treatments – eg immune system dysfunction through viral infection, muscle (mitochondrial) pathology and cytokine inhibition – that Dr Pemberton has wrongly concluded are of no obvious value in this complex multisystem disease.

Despite all the money spent on ‘talking therapies’ (ie cognitive behaviour therapy/CBT) and ‘supervised exercise’ (ie graded exercise therapy/GET) the results just do not match his ‘gold standard’ claims. In our survey of over 4000 people with ME/CFS, 55% reported that CBT made no difference and 19% reported that CBT made their condition worse. With GET, 56% reported it made their condition worse and 21% reported no change.

Having worked in hospital psychiatry I know that mental illness can be just as horrible as any physical illness and that physical and mental factors may well interact in long term condition. However, The ME Association’s criticism of psychiatric research has no relationship to a desire to stigmatise mental illness. We are simply pointing out that without biomedical research there will never be an effective form of treatment for an illness that is estimated to cost the country over £3 billion per annum in lost taxes, benefit payments and medical care.

Dr Charles Shepherd
Hon Medical Adviser, ME Association
Member of MRC Expert Group on ME/CFS Research


COMMISSION’S DECISION IN THE CASE OF SHEPHERD v THE DAILY TELEGRAPH, 11 November 2011

The complainant’s predominant concern lay with the assertion – which appeared briefly in an initial version of the online article – that the ME Association was disingenuous in claiming that sufferers had a legitimate complaint over the level of government-funded research into the biomedical basis of ME/CFS.

The Commission made clear that newspapers are fully entitled to publish the views and experiences of columnists, provided that they are clearly distinguished from fact. It was of the view that readers would be aware that the article reflected the opinions of Dr Pemberton on what was a highly contentious subject – the cause and treatment of ME/CFS. Indeed, the article made clear that there was much controversy surrounding the condition and readers would be aware that there was no unanimously accepted position as to the cause of it. The Commission understood that the complainant strongly disagreed with the columnist’s position that ME/CFS had a “significant psychiatric component” and that a “psychological explanation is a very real one”. It acknowledged that the condition was classified by WHO as a neurological illness; however, this did not render the columnist’s view on the condition inaccurate or misleading. Readers would understand the nature of the condition was disputed and that it was the opinion of the columnist that a psychological explanation was “very real”. Similarly, the Commission was satisfied that readers would understand that the headline reflected the columnist’s opinion – namely that those who rejected the explanation that ME/CFS had a psychiatric component were mistaken in their objections. While it was inevitable that many would disagree with the columnist’s view on the issue, it was satisfied that readers would be able to identify the headline as reflecting his opinion. There was no breach of Clause 1 (Accuracy) on this point.

The Commission then turned to the central aspect of the complaint – the assertion that the ME Association was disingenuous in stating that ME/CFS sufferers were justified in complaining on the grounds there was almost no government-funded research into the biomedical basis of the illness. The complainant considered that it was misleading to state that the assertion that there was a lack of government-funding into the biomedical basis of the illness was “disingenuous”. There had indeed been virtually no research funded by the government – i.e through the Medical Research Council. The organisation had not claimed that there had been no research into the biomedical aspect at all – its criticism rested specifically with the lack of government-funded research. The newspaper considered the claim that sufferers were justified in complaining that there had been almost no such government-funded research was misleading, as it did not make clear that there had been a recent MRC study into the XMRV association with ME/CFS and the claim did not reference the significant amount of research which had taken place in the past, across the world through a range of bodies, into the biomedical basis of the illness, or the upcoming research the MRC had undertaken to fund into exactly this. It was for the Commission to consider whether the claim that the organisation was disingenuous would mislead readers in such a way as to breach of Clause 1 (Accuracy) of the Code.

The Commission considered that readers would understand that it was the opinion of the columnist that the ME Association was disingenuous in its position that complaints over the level of government-funded research were justified. He made clear the basis for his opinion – research was in fact being carried out into the viral aspect, with the MRC backing a recent study into this, and furthermore that research had taken place into the biomedical cause over the years, which had proved inconclusive. There was ultimately no dispute that the MRC had been involved in a study into the connection between XMRV and ME/CFS – although the level of its involvement was a point of contention – and, as such, the Commission did not consider that the claim the MRC backed a recent study into the viral aspect of the disease was misleading. In light of this piece of research, and the fact that further research, albeit not necessarily funded directly by the UK government, was taking place into the biomedical cause of the illness, in addition to the MRC’s undertaking to fund research into this area, the Commission could not establish that the first reason the columnist gave for finding the ME Association’s comments disingenuous – “research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this” – was significantly inaccurate or misleading.

In regard to the further reason the columnist cited for his opinion, he did not specifically state that the “years of research” had been funded by the government, but rather that it had taken place and proved inconclusive. Given that there was no dispute that research had taken place, and continued to take place, into the biomedical aspect of the illness, the Commission could not consider this claim to be inaccurate. Ultimately, the matter was a difference of interpretation and opinion. The columnist considered it was disingenuous to criticise a lack of government funding, when the government had recently backed a study into precisely this issue and, whether government funded or not, such research had taken place for years and proved “inconclusive”. While it fully acknowledged the complainant strongly objected to the columnist’s opinion of the organisation’s position, the columnist was fully entitled to express his views and the Commission did not consider that the reasons given for this view were significantly inaccurate or misleading such as to constitute a breach of Clause 1 (Accuracy). Although it did not establish the claim represented a breach of the Code, the Commission welcomed the newspaper’s decision to remove it from the version published in the newspaper and ultimately published on the website.

The Commission then turned to the additional concern raised by the complainant over the reference to “gold standard treatment”. It noted that the complainant’s position that studies had demonstrated that supervised exercise and talking therapies often had no effect and had the potential to make an individual’s condition worse. The Commission also acknowledged that the columnist supported his description of the treatment in these terms by stating that the National Institute for Health and Clinical Excellence supported this treatment, and in correspondence the newspaper stated that this was the treatment recommended for use on the NHS. Again, this was ultimately a difference of opinion over the efficacy of the treatment, and both parties had provided evidence to support their position. As such, the Commission could not agree that the complainant’s view that the treatment was “gold standard” was misleading or inaccurate – the article made clear that there was dispute over the treatment and readers would understand that the article reflected the complainant’s adherence to the position that the treatment was the best on offer. There was no breach of Clause 1 (Accuracy) of the Code.

Clause 2 (Opportunity to reply) was designed to afford individuals the opportunity to respond to published inaccuracies. While the Commission could well understand the complainant’s desire to publicly clarify and further explain the ME Association’s position, in the absence of a significant inaccuracy in the article, the Commission could not agree that the terms of Clause 2 of the Code were engaged. As such, it did not find that the newspaper’s failure to publish the letter written in response to the article represented a breach of the Code.

In relation to this point, there was some dispute over the number of letters and emails that had been sent to the newspaper in response to the article. The Commission was not in position to come to a decision on this dispute. However, it made clear that the selection of material, including readers’ correspondence, for publication was a matter for the discretion of individual editors. As such, the newspaper’s decision not to publish readers’ letters on the article did not represent a breach of the Code.

The complainant had latterly raised a further concern over the claim in the article “immunologists have been unable to help ME patients”. He stated that recently, in October 2011, results from a “phase two, double-blind, placebo controlled clinical trial into the use of rituximab – an immunomodulatory drug that depletes B lymphyocytes” were published in a peer reviewed journal, which recorded a significant response in the active treatment group, which the research group believed supported the hypothesis that ME/CFS was an infection induced autoimmune disease. The Commission acknowledged this evidence; however, it did not consider that it rendered the columnist’s view that, at the time of writing, prior to the publication of these results, immunologists had not been able to help ME patients inaccurate or misleading. There was no breach of the Code.

Reference No. 114243