Blog: David Tuller, "Trial By Error: My Questions for the Science Media Centre"

[Andy]

On September 20, 2017, a BMJ Publishing Group journal, Archives of Disease in Childhood published the SMILE trial. This trial investigated an intervention called the Lightning Process as a treatment for kids with CFS/ME (as the study called the disease). The lead investigator was Professor Esther Crawley, the University of Bristol pediatrician and a well-known researcher in the field. The trial’s full title: “Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial.”

Not surprisingly, the Science Media Centre played a key role in presenting the SMILE trial findings to the news media, trotting out cautiously supportive statements from experts like Professor Dorothy Bishop, the well-known Oxford University developmental neuropsychologist. The folks at the SMC certainly viewed the trial quite differently than I did, not to mention the many patients, advocates, scientists and others who have criticized it. If the SMILE trial comes under greater scrutiny, as I suspect it might, the SMC could find itself under pressure to answer some tough questions.

Last week, I explained in a post about the SMILE trial how the investigators were able to report that the Lightning Process was an effective treatment. They swapped their original primary and secondary outcomes after more than half of the participants in what became the full sample had already provided data for an earlier feasibility trial. These feasibility trial data had been reviewed to inform the development of the full trial protocol. The data were then analyzed according to this full-trial protocol that was itself based on them.

This circular approach to analysis allowed SMILE to report positive results for self-reported physical function as its primary outcome rather than null results for school attendance at six months. That in turn led to much better press coverage than would have been the case without benefit of the outcome-swapping.

http://www.virology.ws/2017/12/18/trial-by-error-my-questions-for-the-science-media-centre/

 

[Esther12]

Thanks Andy. Great stuff. The role of the SMC in this whole saga has been pretty consistently disgraceful. Good to see this getting some more attention.

It's amazing to me that they've been able to go on playing the same game, even as the wider academic community comes to recognise that there spin on PACE was BS.

 

[Peter T]

David as ever raises a lot of vital questions that need answering, in this case by the Science Media Centre, though as ever it will be a great surprise if they actually attempt to answer any of those that were asked. It may be they will answer a different question and then say they have answered all the questions and any further criticisms must be harrasment.

I have been having problems with the DISQUS comment facility on the Virology Blog which seems to be eating comments left, right and centre. Is anyone else having the same experience?

I attempted to respond to a comment by a Robert McMullan that made some very important points about how selective the SMC is in its coverage of ME, focusing solely on the psychological/behaviour interventions by a small number of UK researchers, including Crawley, but ignoring the vast amount of international research on the biological basis of ME or such as the good news of the American NIH funding for the UK Biobank. Unfortunately this comment then disappeared along with my reply.

My reply related to the one biomedical study the SMC has reported. At the time of commenting I could not remember the details, but felt that this negative briefing, shortly after the journal issues shredding the PACE methodology was published and whilst NICE's decision on reviewing its ME/CFS guidelines was in the balance, was ideologically and politically motivated. A deliberate attempt to defend the control by the PACE apologists of the UK agenda when it was obvious they were losing that control.

I did manage to repost this as a separate comment, but when I later remembered that the study that SMC was briefing against was a recent Stanford study relating to cytokines ( see http://www.sciencemediacentre.org/expert-reaction-to-cytokines-for-chronic-fatigue-syndrome/ for the SMC's only briefing not directly in support of Crawley, PACE et al ) DISQUS would not allow any further comments that contained this link.

 

[Peter T]

I have been having problems with the DISQUS comment facility on the Virology Blog which seems to be eating comments left, right and centre. Is anyone else having the same experience?

I have messaged David and he is following this up, though it seems that the DISQUS comment facility on the Virology Blog is deleting as spam any comments with a weblink and longer comments.

Robert McMullan has also reposted his comment without any hyperlinks in this thread on the Virology Blog and it is well worth looking at.

 

[Esther12]

I have messaged David and he is following this up, though it seems that the DISQUS comment facility on the Virology Blog is deleting as spam any comments with a weblink and longer comments.

I had the article open all this time, so when I just clicked on 'show new comments' all your comments from over the hours appeared... looked like quite the battle you and DISQUS were having!

 

[Peter T]

I did manage to repost this as a separate comment,

Unfortunately that too ultimately disappeared as 'spam'.

 

[Esther12]

I thought I'd post some extra bits about the SMC/CMRC, for people unfamiliar with the link, although I don't go into any detail on the role they've played hyping the PACE trial's spun results (their website can be searched for evidence of that).

The SMC summarise their own history in this document:

http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf


"Tom Feilden, science correspondent for BBC Radio 4’s Today programme, won the UK Press Gazette's first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award. "

"The SMC jointly nominated Simon Wessely for the inaugural Sense About Science John Maddox Prize for Standing up for Science for his courage and bravery in speaking out on CFS in the face on intimidation, which Simon won."

"Supporting experts targeted by extremists We have also been involved in supporting experts who have found themselves being targeted by individuals or groups who do not like their research. This has been particularly important in the case of psychiatrists and psychologists working on chronic fatigue syndrome/ME. These researchers have found themselves in the firing line from a small group of extremists who are opposed to psychiatrists or psychologists doing research on chronic fatigue syndrome/ME.

The SMC ran a press briefing on the first findings from the PACE trial, and supported the researchers involved throughout this process, for example, by organising media training in collaboration with the MRC. When we became aware of the level of intimidation researchers were experiencing we brought together key parties for a brainstorm to discuss what could be done to aid researchers. At this event it was agreed that these harassed experts should speak out publically about the harassment they were experiencing. As a result the BBC Radio 4 Today programme ran an exposé on the piece (http://www.bbc.co.uk/news/science-environment-14326514) and a number of outlets followed the story including the Observer (http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgicencephalomyelitis) and the Daily Mail (http://www.dailymail.co.uk/health/a...reats-investigating-psychological-causes.html).

For some researchers this media work has dramatically reduced the harassment they are experiencing. For others, however, things have not improved. So the SMC ran a second brainstorm in early 2013 to discuss what can be done. It was agreed that more must be invested in putting the case for research of chronic fatigue syndrome/ME explaining the burden and seriousness of the disease both to the media and the public. The SMC will look for opportunities to do media work in this area."

"Seizing the Agenda
...

This kind of agenda setting was also on display in our work around the harassment and intimidation of researchers working on chronic fatigue syndrome/ME. The meeting organised by the SMC on this was the first of its kind and brought the beleaguered researchers together with representatives of funding agencies, the police, the GMC etc. One of the results of that meeting was the decision of a number of academics to go public on their situation with the support of the SMC and their respective press officers . The SMC engineered the coverage through working with the Today programme on an exclusive – a story that was planned over many weeks. The result was huge with

Today making the very best of their exclusive with several different packages on the morning of release. As expected the follow up was huge with almost every newspaper, Sunday paper and influential magazine covering the subject in some way. The results of that coverage have been mixed but include the following:  Many in the scientific community became aware of the situation having previously been unaware  For some researchers the media coverage marked the end of their harassment. For others it has continued  Across the board the researchers who were interviewed received a huge amount of supportive emails from fellow scientists and from chronic fatigue syndrome/ME patients and their families"


This TYME trust document mentions the SMC's involvement with the CMRC a bit too, and is based on an e-mail chain that they FOId. https://www.dropbox.com/s/92m09l9tq55pihh/Behind the Scenes - Research Collaborative.pdf?dl=0

The SMC ran a briefing on the launch of the CMRC, where they again complained about patients: "even for the very researchers trying to help, who have experienced campaigns of harassment from some patients."


http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/

Here's the accompanying press release on the CMRC's launch, which includes: "For treatment purposes, important maintaining factors include comorbid mood disorders, beliefs about causation, and either pervasive inactivity or swinging from inactivity to over-activity (boom and bust pattern of behaviour)."

http://www.bristol.ac.uk/news/2013/9313.html
There was criticism from patients of the way the CMRC was promoted, but in their minutes they act as if this was just about the claimed prevalence rates: https://web.archive.org/web/20131019130005/http://www.actionforme.org.uk/Resources/Action for ME/Documents/get-informed/CMRC-discussion-summary.pdf

 

[Cheshire]

 

[Adrian]

We should remember that Dorthy Bishop has for using her reputation to back PACE. She wrote this article basically lumping patients asking for PACE data with climate change deniers and suggesting transparency damages science.
http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219

 

[Esther12]

We should remember that Dorthy Bishop has for using her reputation to back PACE. She wrote this article basically lumping patients asking for PACE data with climate change deniers and suggesting transparency damages science.
http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219

It was clear she and Lewandowsky had no idea what they were talking about then too. They organised this meeting featuring White and Crawley presenting CFS patients as one of the most fearsome threats science faced: https://figshare.com/articles/RS_scienceandsociety_September_2015_pdf/2061696

Lewandowsky is at Bristol with Crawley. He did this blog which completely misrepresented/misunderstood the reason he was being criticised for his claims on CFS advocacy: http://www.shapingtomorrowsworld.org/lewandowskycfs.html

 

[Adrian]

It was clear she and Lewandowsky had no idea what they were talking about then too.

But they were happy to put their reputations on the line without bothering to find out the details.

 

[Jonathan Edwards]

Why is reality so much more surreal than surrealism these days? I was giving Dr Bishop the benefit of the doubt!

It's a good thing I am not on twitter. I would have been worse than James Coyne I think. Although I might have used fewer profanities.

 

[TiredSam]

Poor Professor Bishop! Is David Tuller trying to get us all singing in chorus?

 

[Esther12]

But they were happy to put their reputations on the line without bothering to find out the details.

Allowing oneself to be guided by prejudices dominant amongst the Establishment is not much of a risk in the UK.

 

[Allele]

Poor Professor Bishop! Is David Tuller trying to get us all singing in chorus?

paging @Graham

 

[Alvin]

Allowing oneself to be guided by prejudices dominant amongst the Establishment is not much of a risk in the UK.

Indeed, no matter how many times their lies are laid out for all to see they seem to be made of Teflon
I suspect if they replaced ME/CFS with cancer it would be a very different story...

 

[Keela Too]

We should remember that Dorthy Bishop has for using her reputation to back PACE. She wrote this article basically lumping patients asking for PACE data with climate change deniers and suggesting transparency damages science.
http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219

She also wrote this article:

Tuesday, 26 January 2016
"The Amazing Significo: why researchers need to understand poker"
http://deevybee.blogspot.co.uk/2016/01/the-amazing-significo-why-researchers.html
Which would seem to contain some useful lessons for ME psycho-social researchers.

 

[Jonathan Edwards]

She also wrote this article:

Tuesday, 26 January 2016
"The Amazing Significo: why researchers need to understand poker"
http://deevybee.blogspot.co.uk/2016/01/the-amazing-significo-why-researchers.html
Which would seem to contain some useful lessons for ME psycho-social researchers.

I think what is interesting about that piece is how patronising and simple minded it is. Everyone in science actually knows all about this problem. The fact that it seems to be fascinating news to Dr Bishop speaks volumes. It is just that some people conveniently forget when they are dealing either with their own data or their friends' data. As we can see.

 

[chrisb]

We should remember that Dorthy Bishop has for using her reputation to back PACE. She wrote this article basically lumping patients asking for PACE data with climate change deniers and suggesting transparency damages science.
http://www.nature.com/news/research-integrity-don-t-let-transparency-damage-science-1.19219

@Adrian makes a good point but perhaps does not go far enough. What she said was: "Orchestrated and well funded harassment campaigns against researchers working in climate change and tobacco control are well documented. Some hard-line opponents to other research, such as that on nuclear fallout, vaccination, chronic fatigue syndrome or genetically modified organisms, although less resourced, have employed identical strategies."

She gets close to the nub of the issue with the comment "although less resourced". It is generally assumed that opponents of climate change and tobacco research represent, and are organised and funded by, the relevant industries intending to disrupt and avoid regulation. The other groups mentioned are loose-knit, self funding associations of individuals with concerns about the imposition of industry interests. It is wholly inappropriate to conflate the issues.

Just because industry has an interest in harassing researchers, does not mean that individuals have a similar interest and do not have valid reasons for requiring information requested.

 

[Graham]

@Allele , judging from your recent poetry, I think you are the one to deliver this! And you probably have a better chance of singing it, too.