Correspondence between BBC Director-General and the Countess of Mar about the FITNET-NHS Trial | 9 December 2016

The BBC Director-General, Tony Hall, has replied to the Countess of Mar about her complaint of bias in the corporation’s coverage of the FITNET-NHS story which was sent to him on November 3. His reply was sent to the Countess of November 21. At the foot of this item is the reply from the Countess, dated 8 December 2016

21st November 2016

The Countess of Mar
House of Lords
London
SW1A 0PW

Via email: marm@parliament.uk

Dear Lady Mar

Thank you for getting in touch.

I have shared your letter with Carol Rubra, BBC Assignment Editor, Health and Science. Please find her response enclosed.

I hope this goes some way to addressing your concerns.

Best wishes

Tony Hall
Director-General

********************

The Countess of Mar
House of Lords
London SW1A 0AA

21st November 2016

Dear Lady Mar

Thank you for your letter of November 3rd about a randomised controlled trial comparing two treatments for children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) which was covered by BBC News and the Today programme on November 1st. The study will investigate whether FITNET-NHS (online CBT) is effective in the NHS, and whether it offers value for money compared to Activity Management.

This is the largest clinical trial of an intervention in CFS/ME and is being directly funded by the National Institutes of Health Research (the research wing of the National Health Service). In my judgement this made it a significant story. The Association of Young People with ME – a charity that represents children with the diseases – and the UK’s Medical Research Council both say there has been a lack of attention given to CFS/ME and that this trial is needed.

We are aware that research about CFS has been controversial and we try to ensure that this is reflected in our coverage. The BBC has reported a broad range of CFS/ME research – including this on striving to find a biological cause (www.bbc.co.uk/news/health-31644618), the difficulties along the way (www.bbc.co.uk/news/health-15017660), the threats sent to people researching this field (www.bbc.co.uk/news/science-environment-14326514) and why discussing the disease has become so heated (www.bbc.co.uk/news/health-14883651).

I accept that the original headline for the article by james Gallagher which referred to people being ‘cured’ was incorrect. In fact it was published in error and was corrected very shortly after the original version was first posted.

As regards your comments about the interview with Professor Esther Crawley on the Today programme, the Editors have given me this response:

“We interviewed Esther Crawley on the 1st November in her capacity as the lead researcher in the FITNET-NHS trial that was being launched that day. The focus of the interview was the trial itself (the largest clinical trial into a treatment for CFS ever undertaken) not the row about whether CFS/ME is a psychological condition or whether psychological therapies are an appropriate treatment, and not the parallel row about whether the PACE trial into the use of psychological therapies in adults has been discredited or not.
 
However because of the long running controversy surrounding the issue we decided to make reference to it by including a clip of Jane Colby from the Tymes TRUST (one of the charities that objects to the classification of CFS/ME as a psychological condition and the use of psychological therapies), We might have substituted Jane Colby’s contribution for someone from the ME Association but they would have made very much the same point.”

I note that you allege that Professor Crawley is under investigation by the General Medical Council. We have contacted the GMC who do not confirm this, We understand that no limited has been placed on her licence to practice.

I also note your concerns that the FITNET study could be instrumental in the forcible removal of children from their parents as a result of applications by Social Services Departments. However this study is not expected to report until 2022. It would seem unlikely that any interim findings would be admissible in court proceedings.

Finally I would like to reassure you over the relations between the Science Media Centre and BBC News. The SMC is a valuable resource for advice on matters requiring expert understanding but it does not condition our journalism. BBC science and health journalists always check directly with the researchers involved in the reports they cover, Their journalism is independent and imperial, in keeping with the BBC Editorial guidelines.

Yours sincerely

Carol Rubra
Assignment Editor, Health, Science and Environment, BBC News.


ON DECEMBER 8, THE COUNTESS REPLIED TO THE BBC DIRECTOR-GENERAL AS FOLLOWS


Lord Hall of Birkenhead
Director General
British Broadcasting Corporation
Broadcasting House
Portland Place
LONDON W1A 1AA

8 December 2016

Dear Lord Hall

Thank you for your letter and for the enclosed letter from Mrs Rubra of 21 November 2016 in response to my complaint of 3 November 2016.

I regret that I find your response far from satisfactory.

I readily accept that, for many years there has been a lack of attention given to CFS/ME, though I and many others in the ME community would dispute that further research into the effectiveness or otherwise of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) following the doubt cast on what was supposed to be the definitive research for ME/CFS, the PACE trial, is either necessary or advisable.

Mrs Rubra states that she is aware that research about CFS has been controversial. As far as I am aware, after 20 years of working with people with CFS/ME, the only real controversy has been around research into the biopsychosocial model of the disease which has received more than the lion’s share of research funding, and the blurring of the lines between chronic fatigue, which is a symptom of many medical and psychological conditions, and myalgic encephalomyelitis which is a serious multisystem organic illness. The FITNET-NHS model is just one example. There have been one or two instances – the finding (reported by the BBC) of XMRV virus in CFS/ME patients’ blood which turned out to be laboratory contamination, for example, where patients’ hopes have been raised, only to be dashed, but that was accepted by patients as a genuine error.

Mrs Rubra mentions threats sent to people researching in the field and harassment and guide me to links where the BBC has reported harassment and threats. Part of a journalist’s ethical and professional responsibilities is to require access to proof when writing a story that makes factual claims. ‘Proof’ means that the journalist has satisfied themselves and their editor that the story is correct and can be supported in a court of law if necessary. It would be helpful if you would clarify how the story was brought to the attention of the BBC and how the subsequent fact checking of the ‘death threats’ story took place. There are some questions that arise from this situation:

1. In the case of the ‘death threats’ articles, what process of fact checking took place?
2. Was the journalist privy to written or verbal information regarding a patient’s diagnosis, or information that revealed patient details including a diagnosis?
3. Where did the information originate (Science Media Centre, individual clinician or otherwise)?
4. Did the journalist verify the link between ‘death threats’ and ME/CFS patients by possibly breaching the Data Protection Act or NHS record-keeping guidelines?

The assertions of harassment and threats, made by some researchers, were effectively debunked by the First Tier Tribunal decision of 16 August 2016 that ordered the release of raw data from the PACE trial (apparently not reported by the BBC) at page 40 of the report.

The Tymes Trust report on the Collaborative compiled from emails received under Freedom of Information shows:

“In the records of the meeting [held in January 2013] where ‘harassment of researchers was discussed, no mention was made of personal threats such as have been reported in the media. Freedom of Information (FOI) requests were listed as the most damaging type of ‘harassment’ along with complaints to the GMC and various institutions and, finally, Parliamentary Questions. The 2016 Tribunal judgement highlighted that Trudie Chalder accepted that ‘no threats had been made to either researchers or participants.” In the past I have enquired about threats and harassment reported to the press by eminent researchers in the CFS/ME field and have found that no such reports were made to the police.

I am glad that the claim for a cure for CFS was rapidly withdrawn, nonetheless, Professor Crawley spoke about ‘recovery’ and a ‘full recovery’ on a number of occasions, particularly during her interview on BBC Bristol. This was not challenged. Whilst there is some debate about the definition of ‘recovery’, following the PACE trial, I am sure you will agree that, to a lay member of the public, ‘recovery’ means that you get better and are able to resume a normal life, so there is little difference between ‘cure’ and ‘recovery’.

The Editors make the point that the focus of the interview was the trial itself. It was stated that the Fitnet-NHS trial is based upon the findings of Fatigue in Teenagers on the internet – The FITNET Trial, Nijhof et al published on 19 February 2011. What was not pointed out to listeners and viewers was that on long-term follow-up there was a null result.

In deciding to include a clip of Jane Colby from the Tymes Trust who, the Editors say, they might have substituted with someone from the ME Association, this is what Jane Colby has to say:

“My experience with the BBC is as follows. Please feel free to quote or use it in its entirety.
 
“The BBC gave me no warning that this was an interview in connection with the public promotion of FITNET. They only said that I would be interviewed opposite Esther Crawley. I therefore had no opportunity to do research on FITNET and the study on which it is based.
 
“The Today programme recorded an interview with me on Monday evening. This took around 30 minutes during which there was no mention of CBT until, at the very end, as if as an afterthought, they asked what I thought of CBT. They only used this clip in their programme.
 
“The Victoria Derbyshire Show was a live interview. Not until I heard the presenter speaking did I know that this was a programme on FITNET. Until that moment I had been under the impression that we were discussing graded exercise. It stretches credibility too far to believe that this was a coincidence – that neither programme gave me any prior warning of FITNET being the subject of discussion.
 
“I would have been able to state that the study in which FITNET is based achieved a null result, had I recently checked the details.
“There was also an issue of representation. One critical voice against three promoting the study was not fair representation.
 
“Altogether I believe this has been appallingly biased coverage. Given the number of parents who have expressed dissatisfaction with Esther Crawley’s treatment to the Tymes Trust, the BBC should be looking more deeply into that.”

Dr Charles Shepherd of the ME Association confirmed that he had been contacted and that he had asked for more detail which apparently was not forthcoming.

In fact Professor Crawley had been under investigation by the GMC since January 2015. I was informed that she was no longer under investigation in the evening of 3 November 2016.

Of course the Science Media Centre is a valuable resource to journalists and other media specialists. That is the whole raison d’etre of the organisation. There are varying opinions about the credibility of some scientific announcements that emanate from the SMC, not surprisingly, on controversial subjects such as CFS/ME. In the light of their past history, I am not surprised that, in promoting Fitnet-NHS as they did, with the generous assistance of the BBC, they ignored the scientific evidence which is beginning to show that the PACE trial recovery figures following CBT and graded exercise therapy (GET) have been grossly exaggerated; they have ignored valid criticism of the Dutch trial where, again, the recovery figures were inflated, and they have ignored two major reports from the USA, one of which rejected the Oxford criteria for diagnosis which were used in the PACE Trial and later added an addendum to their Pathways to Prevention (P2P) report which downgraded the status of CBT and GET as effective treatments for CFS/ME the evidence was insufficient.

In order to get a proper perspective on CBT trials, I draw your attention to the following links:

www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/

www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs

www.virology.ws/2016/12/o2/trial-by-error-continued-the-dutch-studies-again-and-esther-crawley-bonus/

I have taken a lot of care to highlight the very genuine concerns of the ME community about the spending of a reported £1 million on a research study which is simply attempting to justify the belief of the researchers in their own hypothesis – that CFS/ME is a post viral condition compounded by false illness beliefs held by patients. We are not threatening or harassing Professor Crawley; we are simply pressing her to recognise that the science behind this illness if moving very rapidly away from the psychosocial behavioural model. I hope that you will treat these concerns with the same care.

Yours sincerely

Countess of Mar