It must have been 17 or 18 years ago that I first met Fiona Fox. We were both giving a lecture at the same meeting. My talk was about a small study we did surveying UK homeopaths’ attitudes toward MMR vaccinations. It had landed me in deep waters: some homeopaths had complained and the Exeter ethics committee retrospectively withdrew their approval and forbade me to publish the findings (which were less than flattering for the homeopaths). I told my committee to go yonder and multiply and published our results swiftly. I was then told that I had violated our research ethics and threatened with disciplinary action by my own university.
Fiona seemed to like my stance and realized why I had to do what I did. A little later, she invited me to give a presentation at the ‘Science Media Centre’ (SMC) for journalists about our research. It was then that I realized what the SMC did and how important its work truly was.
At the time, the SMC consisted of a small team of highly motivated people linking scientists with journalists – potentially a win/win situation:
- The scientists would see with their own eyes how important journalists could be for getting their message across.
- And the journalists might comprehend that things were frequently more complex than expected.
Yet, by no means an easy job; scientists are often (sometimes rightly) nervous about speaking to journalists, and journalists sometimes (rightly) feel that scientists are not from the same planet as they are. But if it works out well – and in the SMC it usually does – the beneficiary is the consumer who can read excellent science journalism.
The concept of the SMC was as simple as it was convincing!
No wonder then that it was a monumental success. The SMC grew and so did his influence nationally and internationally. Today, there is hardly a media outlet in the UK that does not regularly refer to the SMC when reporting on matters of science. Much of the outstanding reputation of the SMC is due to the tireless work of Fiona. Her enthusiasm for science is infectious, her energy is impressive, her skills in dealing with experts are immaculate, and her nose for a good story is infallible.
In ‘BEYOND THE HYPE‘, Fiona has now summarized the first 20 eventful years of the SMC. She recounts her favorite moments and some of the biggest science stories that emerged with the help of the SMC. The book is a true page-turner and a ‘must read’ for everyone with an interest in science – entertaining and educational in equal measure. It takes us behind the scenes of some of the most remarkable recent developments in science. Fiona’s book will be out on 7 April; it is a historical document that teaches us important lessons and deserves to be read widely.
I hope that the next 20 years of the SMC will be as good as the first.
45 Responses to ‘BEYOND THE HYPE’ – 20 years of the Science Media Centre
Leave a Reply to Dr Julian Money-Kyrle Cancel reply
This site uses Akismet to reduce spam. Learn how your comment data is processed.
Unfortunately, you should really have a look at how the SMC has promulgated SCAM in supporting the now completely discredited PACE study, and how it has supported the denial of the existence of ME/CFS for decades.
Adding a link to the paper which analysed the PACE trial according to its own protocol, rather than the protocol it was changed to, mid-trial. They can criticise in depth far better than I can.
https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT
why?
If you want to know more about the horrible PACE study stuff, check out https://www.virology.ws/mecfs/ Tuller has been writing for a long time about the PACE trial and how they turned a negative trial into a positive one. And he has talked about the impact GET/CBT has had on people with ME/CFS
The SMC promulgates pseudoscience and is responsible for supporting the gaslighting of sufferers. I cannot go into long detailed explanations as I suffer from serious brain-fog, which is why I posted the link to the Wilshire paper.
The PACE trial has not yet been retracted (thanks very much to support from those such as FF) but NICE has removed the “treatment” recommendations that the trial was supposedly supporting, from it’s guidelines.
you make serious allegations and claim you cannot provide explanations or evidence?
nice!
and you want me to write about your notions?
I’m often foggy too, from allergies. There are many possible causes.
“Foggy” – for me at least – meaning both cognitive impairment and a foggy feeling in one’s head that goes along with it.
It is all in the paper in the link. The paper was published in BMC Psychology.
David Marks dedicated an entire issue of Health Psychology to the scandal.
https://journals.sagepub.com/doi/full/10.1177/1359105317722370
This is what the SMC had to say about the Lightning Process. That it should be tried, not that it was a SCAM
https://www.sciencemediacentre.org/the-lightning-process-a-controversial-treatment-for-children-with-chronic-fatigue-syndrome/
I do apologise, but I struggle to even get a coherent sentence together. I have serious short-term memory problems.
I know a bit about the ‘lightning process’ and have blogged about it in the past. I do not see, however, where the SMC claims that “it should be tried”.
In the very last sentence.
“We do not know the implications for the results, however, this might have implications if this treatment were to be rolled out more widely.”
They do not dismiss the trademarked, commercial LP, but suggest it should be rolled out more widely. Despite it containing discredited NLP.
I thought I had already posted this comment.
If I am just making a mess of things, please feel free to delete my comments here.
I will never, ever trust the SMC.
“We do not know the implications for the results, however, this might have implications if this treatment were to be rolled out more widely.”
This is not at all saying “it should be tried”!
I suppose it depends on how you read it.
I read it as giving the LP a green light to “go ahead, it might be really interesting, if we subject more sick folk to it, we’ll find out more”.
Given most psychology studies end up with; “This secondary outcome we found to be significant might be really interesting, we need to do more”. I find their last sentence very worrying.
The SMC has taken a full throttle approach to supporting the PACE trial and the biopsychosocial model, and the defamation they have subjected sufferers to is a matter of record.
People with ME are very wary indeed of the SMC. More here, with references.
https://me-pedia.org/wiki/Science_Media_Centre
I suppose it depends on how you read it.
NO, IT DOESN’T!
The SMC link you gave is rather critical of the Lightning Process study, actually.
What they’re saying is that the problems with the Lightning Process study that the SMC mentions, imply that if the Lightning Process were used on more patients, it might NOT be good for those patients.
They are actually cautioning *against* using the Lightning Process more widely.
I am delighted you read it that way. It is not how the LP proponents take it.
There are numerous examples of bad faith from the SMC over ME/CFS it has happenedfor decades. The person behind the setting up of PACE trial and the setting up of the SMC is Simon Wessely.
The article on p 16 here was found in a legal tribunal to be full of unfounded nonsense. The only evidence of harrassment and violence that could be produced was one incidence of hecking at a lecture when a coffee cup got broken on the floor.
Which occurred after the allegations.
https://www.sciencemediacentre.org/wp-content/uploads/2012/10/SMC-Views-from-the-front-line-essays-on-the-SMC.pdf
And an official legal opinion on it. (not just mine)
https://www.scottishlegal.com/articles/david-j-black-pace-gate-have-we-been-waddelled
LP proponents are barmy anyway, never mind them!
So are the proponents of the biopsychosocial theory and the pseudoscientific nonsense of the PACE trial, which which have very sadly been promulgated and supported by the SMC.
I will stop now. Thank-you for your consideration and I do apologise for not managing to be too coherent.
Dear Edzard,
I think you should take note of what Peggy-Sue has been trying to say even if she has had difficulty providing the evidence that you should actually be very familiar with. The link given by Kathryn is a good start but the existence of problems with SMC has been known for years now. There is a good review by George Monbiot (‘Iinvasion of the Entryists’). When it comes to pseudoscience in medicine the SMC has not been a champion of the truth by any means. The work on ME/CFS and related ‘biopsychosocial’ nonsense is the most egregious example but I doubt it is an exception.
In the background is a very eery political story that has most recently been shown to have made its way to No.10 Downing Street. George gives a good resume. There is also material from the Centre for Welfare Reform and from an interesting blogger who used to be part of the Revolutionary Communist Party where things seem to have started. It is bizarre and essential reading for anyone who wants to understand quackery and misinformation!
And David Black’s blog is worth a look.
https://www.scottishlegal.com/articles/david-j-black-welcome-to-the-machine
why?
I only see plenty of innuendo against the SMC and an almost total absence of facts.
He is discussing propaganda. The facts are there in detail. The SMC has persistently misrepresented the science in in a way relevant to the interests of those who founded it. For ME/CFS that has become abundantly clear. There are other examples if you look but this is the point Peggy-Sue was making. The denigration of patients has been totally unethical and the promotion of poor quality science inexcusable.
another evidence-free statement!
show me the evidence.
show me when the SMC has denigrated patients.
I only have a tablet and not a computer so pasting URLs and excerpting text is extra difficult. You are lauding an organization that has been consistent in promoting a branch of scientific literature with regards to one specific illness, one form of talk therapy, and one form of physical rehabilitation that have been initially controversial, gradually contested through scientific publications in peer-reviewed journals, and, after decades of unmeasurable harms, discarded as far as official guidance by multiple public health authorities as being unfit for purpose.
It has solicited expert comment from a plethora of researchers whose work now stands as largely discredited. It has coordinated awareness campaigns to present narratives of researcher harassment by militant patients which was found not to be valid at Tribunal in a FOIA case lost by principals featured in the above mentioned expert commentaries. It has criticized at every possible turn the publication of any research seen as conflicting with the literature favored by not only the selected group of expert commenters but also members of its board.
I can paste a URL to every instance of their staunch defense of this now-debunked model of illness and treatment they chose to feature, if you’re tired of telling Dr. Edwards to ‘shut up.’ And the glossy pdf where it is described in detail how the SMC worked with researchers and journalists to advance the idea, largely a myth, of patients as dangerous, militant extremists comparable to climate change denialists and animal rights arsonists. And the research they favor that feature, among other things, reviews of unpublished data; studies and prevalence estimates utilizing cohorts without benefit of formal diagnosis; and a number of editorial corrections, expressions of concern, etc etc.
These are not unsubstantiated statements. It will take hours to present them all here but I will do it if you’re going to have the audacity to cast Jo Edwards as essentially a conspiracy theorist. If your burden of proof is language stating what you demand it say without regard to nuance or patterns or inference then you might ask why SMC defended the findings and methodology of the PACE trial vehemently from its publication and still do; given that official guidance from NIH, CDC and now NICE has removed recommendations based upon PACE trial findings, how one might still view SMC as relevant, authoritative, or committed to scientific principles and the scientific method; and why they have never bothered to issue any comment deigning to admit they might have gotten it wrong. A decade’s worth of incredibly nasty screeds in the lay press wrongfully accusing a group stricken with an unspeakably debilitating physical disease of being violent criminals is a significant part of their legacy, and if you refuse to acknowledge this, then you’re hardly any better just because, unlike the PACE people, you call out proponents of a harmful scam—just the one you for whatever reason see fit to speak on.
PACE has done far more damage and caused way more unnecessary human suffering than the Lightning Process ever will or could.
I am friendly on Twitter with a well-known debunker of junk psychological studies. We had made contact when he looked at PACE and agreed with our damning of it. He had been contacted by someone who is now the Science Editor of a national newspaper. I won’t name them as I haven’t asked their permission.
The journalist had attended the SMC briefing on SMILE. They smelt a rat. Fox had spoken to them and so laid it on about the ‘dangerous militant ME activists’ that they wanted to learn more by speaking to a patient. The debunker passed them on to me, we spoke and they wrote a critical and generally well-received piece.
My point, though, is that Fox in a briefing about a piece of junk went all in, not on the junk nor the poorly designed trial but on the ‘dangerous ME activists’ to such an extent that a neutral party had doubts.
Chronology is important. We know from the minutes of the PACE trial steering committee that there was a media campaign planned for the release of the trial findings and that the SMC were lined up to help. Soon afterwards the SMC along with its sister organization Sense About Science, also headed by one of the ex-RCP group, launched its ‘dangerous militant ME activists’ story.
The most effective way to avoid scrutiny of a trial is to try to discredit its critics. The SMC succeeded in doing so. The ‘dangerous militant activists’ has hung over ME patients ever since.
I have no doubt that on some issues the SMC has been ‘on the right side’, but that does not give it a free pass. For me, the big issue is that it pretends to be a neutral organization, but clearly is not one.
On ME, far from being neutral, it has taken the side of junk science because that fitted with the prejudice of Fox (and others).
If I may, I have discussed some of these issues on my blog:
Response to Fox:
https://johnthejack.com/2017/10/20/a-response-to-fiona-fox/
About SaS’s involvement:
https://johnthejack.com/2016/10/17/sense-about-science-the-pace-trial-and-me/
The denigration of patients may not be explicit in SMC ‘expert comments’ but the persistent hyping of poor science is effectively denigration – and it is part and parcel of a campaign that includes overt denigration by the same experts in lectures, articles and the media.
There is nothing evidence free about this situation, Edzard. As you know, a recent FOI request revealed that a prominent individual associated with the Royal College of Psychiatrists and without doubt one of these same ‘experts’ (typographical errors give a strong indication as to who it is) tried to manipulate the outcome of the NICE guideline on ME/CFS by using personal influence in an unethical way. The message to a NICE officer specifically indicates sidestepping patients’ interests by interfering with due process. One has to be pretty tone deaf not to see what has been going on.
“The denigration of patients may not be explicit in SMC”
But your allegation was most explicit.
Show me the evidence or shut up!
Well, we could start with the conference run by the SMC for those experiencing ‘harassment’ from patients with ME/CFS – notably in the form of FOI applications into their data – which finally revealed the rotten core of the research.
Apparently the attendees…
“… were told that we needed to make better use of the law and consider using the press in our favour – as had researchers harried by animal rights extremists.“
If you cannot see the wood for the trees Edzard, too bad. But if an organisation sets itself up to provide the media with good science information – in which it has failed miserably since UK media coverage of bio medical science is atrocious – then it has no business supporting scientists who call legitimate enquiry into their poor methodology ‘harassment’.
Apparently the attendees…
“… were told that we needed to make better use of the law and consider using the press in our favour – as had researchers harried by animal rights extremists.“
BY WHOM?
If you cannot see the difference between hearsay and evidence, Jonathan, too bad.
I can give you chapter and verse Edzard but I prefer not to name names here and perpetuate bad feeling. It is in the public domain if you are interested.
more like:
“I can give you chapter and verse Edzard but I prefer to make wild and unsubstantiated accusations”
It seems likely that this is a reference to SMC meetings like this, the existence of which we only know about thanks to minutes being released via a terrifying FOI attack: https://citizen-network.org/assets/fullsize/595/minutes-science-media-centre-cfs.jpg
I posted some other info related to this in another post, but thought that this link could be useful here too.
Actually, if you want to nit pick, my allegation was not that explicit. I simply said that the denigration of patients has been totally unethical. And the SMC does not need to do that explicitly for their behaviour to be unethical. The SMC deliberately puts out material to be used by the press. It has repeatedly put out misleading material supporting poor quality research that, exactly as expected, has been used by the broadsheet press to support marginalisation and denigration of the patient community. I have lost count of the articles but there must be a dozen or so from the Guardian, at least. Fortunately, journalists are getting wise to the situation. A bit before the pandemic I had lunch with James LeFanu and Jerome Burne and it was interesting to see the reaction to mention of SMC. I don’t think its credibility has worn well.
“It has repeatedly put out misleading material supporting poor quality research”
ANOTHER UNSUBSTANTIATED CLAIM!
One problem here is that it seems that there are rarely publicly available recordings of SMC briefings. It would be useful if recordings of these briefings were and made publicly available, once the research being discussed was released, so that we could have a better understanding of the SMC’s work.
For example, it is difficult to be certain how much of the spin surrounding the PACE trial was filtered through the briefing the PACE researchers held at the SMC. With the PACE trial we can confidently say that on its release in 2011 the Lancet published a commentary claiming that “the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%”and that this was “a strict criterion for recovery”. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext. We can also easily see that this supposedly strict criterion for recovery was in fact just cut-offs on two subjective questionnaires that overlapped with the trial’s own entry criteria. So this was a nonblinded trial, with CBT and GET being interventions that both made claims likely to encourage positive expectations from patients, and yet a patient could be classed as ‘recovered’ after these interventions even if they had completed these two questionnaires more negatively than when they were entered into the trial. (For more details, compare the criteria for the “normal ranges” in the Lancet 2011 paper with the trial entry criteria – though you need to do so with an awareness that the claims made in this paper about the origins of the SF36-PF normal range are inaccurate: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext). We can also confidently say that the PACE team used the same criteria that was misleadingly described as a “strict criterion for recovery” to provide figures on the number of patients “back to normal” in a leaflet for patients: https://www.qmul.ac.uk/wiph/media/the-wolfson-institute-of-population-health-wiph/documents/participantsnewsletter4.pdf. Following an SMC briefing, a Guardian article quotes Trudie Chalder using the same “back to normal” phrasing in a piece titled ‘Study finds therapy and exercise best for ME’ https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment. The Independent’s front page headline was “Got ME? Just get out and exercise, say scientists”: https://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html When the PACE trial researchers were eventually forced by a legal tribunal to release data for the results for the recovery criteria they prespecified in their own trial protocol (after spending £250k to try to fight this FOI request), less headline grabbing null results were revealed:
https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724?journalCode=rftg20
I believe that there was a recording of some of the SMC PACE briefing, that included the researchers repeating their misleading claims about “back to normal”, but it certainly is not available on the SMC website. I wanted to provide some background to the concerns raised by others, but it required quite a long paragraph to explain some of the concerns about just this one phrase, so while there are many other examples I don’t know how worthwhile it is to try to detail more of them.
re the Lightning Process trial, SMILE, this was also promoted with a SMC briefing from the lead author (it’s somewhat unclear how the SMC decides what research should be promoted in this way and it would be good to have more transparency on this): http://www.sciencemediacentre.org/the-lightning-process-a-controversial-treatment-for-children-with-chronic-fatigue/
We don’t know exactly what was said there, but the coverage that followed this was not exactly critically minded: https://www.theguardian.com/society/2017/sep/20/controversial-lightning-process-helps-children-with-chronic-fatigue-syndrome-me
I’d started writing about the SMC and the Lightning Processes SMILE trial, but under a Fiona Fox blog on this I saw a comment that covers many of the points needed, and so I will just repost that here if that’s ok. I’ll just add in a few additional points of my own first:
-Crawley had previously claimed that the PACE trial showed as recovery rate of 30-40% for CBT and GET: https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-11-217 (this work also seems also to have been promoted by the SMC: https://www.sciencemediacentre.org/economic-costs-of-chronic-fatigue-syndromeme-new-research/)
-The SMILE trial’s ISRCTN entry falsely claims it was prospectively registered, when in fact it was registered not only after the trial had started, but also after the primary outcome was swopped from one that eventually reported to be a null result, to one with a positive result. https://www.isrctn.com/ISRCTN81456207 (This can be confirmed by checking the documents cited below).
-This led to ADJ BMJ publishing the trial, in breach of their own guidelines requiring prospective registration. When others pointed out the problem they acknowledged what had happened, but seemed fine with rewarding the researchers for their misleading claim: “BMJ policy requires prospective registration of randomised trials but we do not consider a failure to enforce that policy grounds for retraction.”
-Crawley had done a TEDx talk presenting criticism of her Lightning Process trial as anti-science harassment, following a similar theme from the SMC, and presenting an image of a death threat as an example of the attacks she faced, even though this death threat had been created by a graphic designer who had asked her to not use his work as if it was something sent to her. After this was pointed out to TEDx they removed her talk: https://www.coyneoftherealm.com/2017/12/21/carly-maryhews-open-letter-to-tedxbristol-regarding-esther-crawleys-disrupting-your-view-of-me-presentation/
-Fiona Fox was at the SMC meeting, described below, that presented debate in the House of Lords, complaints and FOI requests as the forms of harassment that CFS researchers faced (with FOI requests being described as the most damaging). No other examples of harassment were listed. Fox went on to promote the PACE researchers attempt to reduce transparency around research by further limiting the scope of the FOIA: https://pbs.twimg.com/media/CVyL6v0W4AAmSKE.jpg:large
Now over to scary vocal critic:
https://www.sciencemediacentre.org/inconvenient-truths/
Scary vocal critic says:
September 29, 2017 at 05:59
The way that this blog glosses over important details in order to promote a simplistic narrative is just another illustration of why so many are concerned by Fiona Fox’s work, and the impact the Science Media Centre.
Lets look in a bit more detail at the SMILE trial, from Esther Crawley at Bristol University. This trial was intended to assess the efficacy of Phil Parker’s Lightning Process©. Phil Parker has a history of outlandish medical claims about his ability to heal others, selling training in “the use of divination medicine cards and tarot as a way of making predictions” and providing a biography which claimed: “Phil Parker is already known to many as an inspirational teacher, therapist, healer and author. His personal healing journey began when, whilst working with his patients as an osteopath. He discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct! He further developed this ability to step into other people’s bodies over the years to assist them in their healing with amazing results. After working as a healer for 20 years, Phil Parker has developed a powerful and magical program to help you unlock your natural healing abilities. If you feel drawn to these courses then you are probably ready to join.” https://web.archive.org/web/20070615014926/http://www.healinghawk.com/prospectushealing.htm
While much of the teaching materials for the Lightning Process are not available for public scrutiny (LP being copyrighted and controlled by Phil Parker), it sells itself as being founded on neurolinguistic programming and osteopathy, which are themselves forms of quackery. Those who have been on the course have described a combination of strange rituals, intensive positive affirmations, and pseudoscientific neuro-babble; all adding up to promote the view that an individual’s ill-health can be controlled if only they are sufficiently committed to the Lightning Programme. Bristol University appears to have embraced the neurobabble, and in their press release about the SMILE results they describe LP thus: “It is a three-day training programme run by registered practitioners and designed to teach individuals a new set of techniques for improving life and health, through consciously switching on health promoting neurological pathways.”
https://www.bristol.ac.uk/news/2017/september/lightning-process.html
Unsurprisingly, many patients have complained about paying for LP and receiving manipulative quackery. This can have unpredictable consequences. This article reports of a child attempting to kill themselves after going on the Lightning Process: https://www.nrk.no/livsstil/forsokte-selvmord-etter-me-kurs-1.7891470 Before conducting a trial such a this, the researchers involved had a responsibility to examine the course and training materials and remove all pseudo-science, yet this was not done. Instead, those patient groups raising concerns about the trial were smeared, and presented as being opposed to science.
The SMILE trial was always an unethical use of research funding, but if it had followed its original protocol, it would have been less likely to generate misleading results and headlines. The Skeptics Dictionary’s page on the Lightning Process features a contribution which explains that: “the Lightning Process RCT being carried out by Esther Crawley changed its primary outcome measure from school attendance to scores on a self-report questionnaire. Given that LP involves making claims to patients about their own ability to control symptoms in exactly the sort of way likely to lead to response bias, it seems very likely that this trial will now find LP to be ‘effective’. One of the problems with EBM is that it is often difficult to reliably measure the outcomes that are important to patients and account for the biases that occur in non-blinded trials, allowing for exaggerated claims of efficacy to be made to patients.”
http://skepdic.com/lightningprocess.html
The SMILE trial was a nonblinded, A vs A+B design, testing a ‘treatment’ which included positive affirmations, and then used subjective self-report questionnaires as a primary outcome. This is not a sensible way of conducting a trial, as anyone who has looked at how junk-science can be used to promote quackery will be aware.
You can see the original protocol for the SMILE trial here (although this protocol refers to merely a feasibility study, this is the same research, with the same ethical review code, the feasibility study having seemingly been converted to a full trial a year into the research): http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/smprotv6final.pdf
The protocol that: “The primary outcome measure for the interventions will be school attendance/home tuition at 6 months.” It is worth noting that the new SMILE paper reported that there was no significant difference between groups for what was the trial’s primary outcome. There was a significant difference at 12 months, but by this point data on school attendance was missing for one third of the participants of the LP arm. The SMC failed to inform journalists of this outcome switching, instead presenting Prof Crawley as a critic converted by a rigorous examination of the evidence, despite her having told the ethics review board in 2010 that “she has worked before with the Bath [LP] practitioner who is good”. https://meagenda.wordpress.com/2011/01/06/letter-issued-by-nres-following-scrutiny-of-complaints-in-relation-to-smile-lighting-process-pilot-study/
Also, while the original protocol, and a later analysis plan, refer to verifying self-reported school attendance with school records, I could see no mention of this in the final paper, so it may be that even this more objective outcome measure has been rendered less useful and more prone to problems with response bias.
Back to Fiona Fox’s blog: “If you had only read the headlines for the CFS/ME story you may conclude that the treatment tested at Bristol might be worth a try if you are blighted by the illness, when in truth the author said repeatedly that the findings would first have to be replicated in a bigger trial.”
How terrible of sloppy headline writers to misrepresent research findings. This is from the abstract of Esther Crawley’s paper: “Conclusion The LP is effective and is probably cost-effective when provided in addition to SMC for mild/moderately affected adolescents with CFS/ME.” http://adc.bmj.com/content/early/2017/09/20/archdischild-2017-313375
Fox complains of “vocal critics of research” in the CFS and climate change fields. There has been a prolong campaign from the SMC to smear those patients and academics who have been pointing out the problems with poor quality UK research into CFS, attempting to lump them with climate change deniers, anti-vaccinationists and animal rights extremists. The SMC used this campaign as an example of when they had “engineered the coverage” by “seizing the agenda”:
http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
Despite dramatic claims of a fearsome group of dangerous extremists (“It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”), a Freedom of Information request helped us gain some valuable information about exactly what behaviour most concerned victimised researchers such as Esther Crawley:
“Minutes from a 2013 meeting held at the Science Media Centre, an organisation that played an important role in promoting misleading claims about the PACE trial to the UK media, show these CFS researchers deciding that “harassment is most damaging in the form of vexatious FOIs [Freedom of Information requests]”.[13,16, 27-31] The other two examples of harassment provided were “complaints” and “House of Lords debates”.[13] It is questionable whether such acts should be considered forms of harassment.
http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html
[A full copy of the minutes is included at the above address.]
Since then, a seriously ill patient managed to win a legal battle against researchers attempting to release key trial data, picking apart the prejudices that were promoted and left the Judge to state that “assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder.” http://www.informationtribunal.gov.uk/DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF
So why would there be an attempt to present request for information, complaints, and mere debate, as forms of harassment? Rather embarrassingly for Fiona and the SMC, it has since become clear. Following the release of (still only some of) the data from the £5 million PACE trial it is now increasingly recognised within the academic community that patients were right to be concerned about the quality of these researchers’ work, and the way in which people had been misled about the trial’s rsults. The New York Times reported on calls for the retraction of a key PACE paper (Robin Murray, the journal’s editor and a close friend of Simon Wessely’s, does not seem keen to discuss and debate the problems with this work): https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html The Journal of Health Psychology has published as special issue devoted to the PACE trial debacle: http://journals.sagepub.com/doi/full/10.1177/1359105317722370 The CDC has dropped promotion of CBT and GET: https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/ And NICE has decided to a full review of its guidelines for CFS is necessary, citing concerns about research such as PACE as one of the key reasons for this: https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-4602203537/chapter/how-we-made-the-decision https://www.thetimes.co.uk/edition/news/mutiny-by-me-sufferers-forces-a-climbdown-on-exercise-treatment-npj0spq0w
The SMC’s response to this has not been impressive.
Fox writes: “Both briefings fitted the usual mould: top quality scientists explaining their work to smart science journalists and making technical and complex studies accessible to readers.”
I’d be interested to know how it was Fox decided that Crawley was a top quality scientist. Also, it is worrying that the culture of UK science journalism seems to assume that making technical and complex studies (like SMILE?!) accessible for readers in their highest goal. It is not a surprise that it is foreign journalists who have produced more careful and accurate coverage of the PACE trial scandal.
Unlike the SMC and some CFS researchers, I do not consider complaints or debate to be a form of harassment, and would be quite happy to respond to anyone who disagrees the concerns I have laid out here. I have had to simplify things, but believe that I have not done so in a way which favours my case. It seems that there are few people willing to try to publicly defend the PACE trial anymore, and I have never seen anyone from the SMC attempt to respond to anything other than a straw-man representation of their critics. Lets see what response these inconvenient truths receive.
“What can be asserted without evidence can also be dismissed without evidence.”
— Christopher Hitchens
I sincerely hope you are not relying on Burne to lend any credibility?
This award winning health journalist couldn’t even work out who was protesting against the Advertising Standards Authority over homeopathy some years ago: Why hounding homeopaths is both batty and arrogant.
For some obscure and unfathomable reason, he seemed to think it was me who was protesting when it was blatantly obviously a bunch of homeopaths, annoyed that the ASA was clamping down on their unevidenced advertising claims. His hilarious schoolboy errors are exposed here: A bad week for homeopaths but a great one for the Nightingale Collaboration.
Beyond the hype? This IS the hype, or at least continuation of it. Kindly do your homework on the PACE “trial” scandal.
Edzard, I googled the words Jonathan quoted (with the word CFS) and the top result discusses the same quote (but it’s quite far down): https://www.coyneoftherealm.com/2016/09/23/before-you-enroll-your-child-in-the-magenta-chronic-fatigue-syndrome-study-issues-to-be-considered/
The quote is directly taken from a pamphlet, published by the SMC and hosted on their website even now, which quotes Esther Crawley as saying: ‘We were told that we needed to make better use of the law and consider using the press in our favour – as had researchers harried by animal rights extremists.’
It’s page 17 of this PDF here: http://www.sciencemediacentre.org/wp-content/uploads/2012/10/SMC-Views-from-the-front-line-essays-on-the-SMC.pdf
She prefaces this by saying, ‘The SMC organised a meeting so we could discuss what to do to protect researchers.’ So it’s fair to say that ‘when we (the researchers) were told’, she is referring to the advice given by the SMC at that meeting (the whole article is about how helpful the SMC were in that instance).
From a patient’s point of view, it has taken 10 years for some of the media to start taking small steps away from the harm done to me and others by the SMC led media publicity that claimed falsely that the PACE trial proved that exercise and positive thinking lead to recovery from ME/CFS. You quietly ignored at the same time the inconveient truth that the SMILE trial, sister trial PACE done with more severely affected housebound patients, showed no benefit at all for CBT and graded exercise treatments.
It was known then that the claims made and promoted by the SMC were false. But in the face of the power of the SMC patients are powerless, especially when all people with ME/CFS are also characterised as dangerous militants harrassing dedicated researchers. As others have shown that narrative was explicitly promoted by the SMC on no factual grounds.
That has directly harmed me and others, with clinicians, carers and others believing the lies and treating me and thousands of others accordingly as malingers, not as severely disabled sick people.
It is only now that NICE has at last actually reviewed the evidence from PACE and other trials and found all the evidence of low and very low quality, and concluded, as the US CDC did some years ago, that there is no credible evidence that CBT or GET lead to clinically significant improvement, let alone recovery. The NICE guideline published in October 2021 now explicitly states that these ‘treatments’ must not be used. There is evidence from large surveys that telling patients with ME/CFS causes harm. All that was known 10 years ago, but the SMC chose to back it’s powerful supporters such as Simon Wessely over the evidence.
As for the Lightning Process, I suggest you read these experiences of people with ME/CFS in Norway who underwent LP training. https://lp-fortellinger.no/en/lp-stories/
Telling people with ME/CFS that exercise and positive thinking will help them recover, as the SMC has done, and characterising sick people as malingerers and dangerous militants has done untold harm.
The SMC needs to seriously review its ethical principles – if it has any.
I note you dismissed the earlier comments from Professor Jonathan Edwards. Perhaps you should take the time to read his expert testimony to the NICE guideline review committee.
https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3
A small correction. It was the FINE trial I meant in my first paragraph as the sister trial to PACE that never gets mentioned, not the SMILE trial.
I dislike these silly acronyms invented by these particular researchers.
Unfortunately silly acronyms for medical trials are here to stay, including many important cancer studies.
But perhaps we should feel some pity for those in IT who have to contend with TWAIN drivers – small pieces of software that provide the interface between a document scanner and the operating system of a PC. It stands for Tool Without An Interesting Name.
QUOTE
The word TWAIN is not officially an acronym, but it is a backronym. The official website notes that “the word TWAIN is from Kipling’s “The Ballad of East and West” — ‘…and never the twain shall meet…’ — reflecting the difficulty, at the time, of connecting scanners and personal computers.
It was up-cased to TWAIN to make it more distinctive. This led people to believe it was an acronym, and then to a contest to come up with an expansion. None was selected, but the entry Technology Without an Interesting Name continues to haunt the standard. For example, the Encyclopedia of Information Technology lists “Technology Without an Interesting Name” as the official meaning of TWAIN.
https://en.m.wikipedia.org/wiki/TWAIN#Source_of_TWAIN_Name
END of QUOTE
Hi,
The SMC organised a smear campaign against critics of the PACE trial.
https://me-pedia.org/wiki/Intimidation_and_bullying_of_PACE_trial_critics
The PACE trial has been widely discredited. NICE recently graded all the evidence for GET and CBT as low and very low quality (including the PACE trial) and withdrew their recommendations for the CBT and GET.
https://me-pedia.org/wiki/PACE_trial
Simon Wessely was the subject of many of the harrassment stories. He was the most prominent ME/CFS researcher >600 papers, was the main architect of the behavioural approach and was involved in the PACE trial. He also helped set up the SMC and was on the board of directors. This conflict of interest that wasn’t disclosed in any of the stories.
https://me-pedia.org/wiki/Simon_Wessely
One further thought for you to ponder, then I’ll desist.
I note your excellent effort to get research showing problems with homeopathy drawn to the attention of the SMC and thence to the media.
Perhaps in the same spirit of revealing problematic alternative therapies, you might like to investigate and get the SMC to publicise the harm being done by a much more dangerous alternative treatment, the Lightning Process.
Rather than taking you through just what a serious problem this cult-like quackery is, and the lives it ruins, you would do best to start with this article by psychology professor Brian Hughes, as well as reading the patients’ stories I linked earlier.
https://thesciencebit.net/2021/10/31/self-styled-medical-leaders-defend-neurolinguistic-processing-as-legit-treatment-for-me-cfs/
Not only is LP a scam, it is inexplicably defended by some senior medical people who should know better. You ask, quite reasonably for comments to include links to evidence. The links are all in Brian Hughes article, so I won’t repeat them here.
Taking up this as a project worth your effort to pursue, and hopefully get LP finally banned, would do a great service to sick people, including people with post Covid symptoms who I understand are now being targeted. It’s the sort of story that should be right up the SMC street, with lots of meat for journalist to get their teeth into – sick patients being scammed and harmed, doctors defending it in the face of a complete lack of evidence, shoddy research being misrepresented as evidence, Long Covid patients being duped…
Over to you.
It’s certainly a good idea to publicly endorse the well-connected SMC and the investigators they promote, because criticizing them can be hazardous to one’s career. For example, David Tuller wrote articles criticizing Esther Crawley’s research and her university responded by trying to have Dr Tuller removed from his university position. [1] Fortunately Dr Tuller has the support of his institution and peers who understand that the PACE trial and related research is simply awful. His experience with the Wessely School is hardly unique, as shown by the long list of examples at ME-Pedia.org. [2]
For another example, not even Members of Parliament are immune from the attacks: “During a UK parliamentary debate on myalgic encephalomyelitis (ME) and the PACE trial, Carol Monaghan revealed that Professor Sharpe had written to tell her that her behavior was unbecoming of an MP.” [2]
Year after year Regius Professor Sir Simon collects more and more official awards and titles. Obviously he and his PR firm Science Media Centre are carrying water for Very Important People. Meanwhile NICE is being publicly attacked by the Royal Colleges because the new ME Guideline threatens to upset the Rehabilitation apple cart. [3]
So far the Royal Colleges have been unable to huff-and-puff enough to blow down the new guideline; they could probably benefit from a vigorous course of graded exercise and magic CBT.
[1] https://www.virology.ws/2017/12/23/trial-by-error-bristols-complaint-to-berkeley/
[2] https://staging.me-pedia.org/wiki/Intimidation_and_bullying_of_PACE_trial_critics
[3] https://www.virology.ws/2021/08/19/trial-by-error-nice-squares-off-against-royal-college-bullies-over-new-me-cfs-guidelines/