The Countess of Mar was unhappy about the BBC’s reply on 21 November 2016 to her official complaint about their reporting of the proposed UK FITNET trial. On 8 December the Countess wrote to the BBC director-general and this has been published by the ME Association:
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:
- In the case of the ‘death threats’ articles, what process of fact checking took place?
- Was the journalist privy to written or verbal information regarding a patient’s diagnosis, or information that revealed patient details including a diagnosis?
- Where did the information originate (Science Media Centre, individual clinician or otherwise)?
- 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
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
