More from Science Medica Centre on SMILE

[Revel]

Written by a member of the Revolutionary Communist Party.

Apparently Fox was awarded an OBE in 2013 for "services to science".

 

[Countrygirl]

Apparently Fox was awarded an OBE in 2013 for "services to science".

In translation this reads for 'services to the Establishment'

 

[lilpink]

Scroll to 'Scary Vocal Critic'. Now that's what I call a 'comment'. SMC are losing their own plot... it was always decidedly bizarre (a bit like Bobby in the shower ) ... now they're looking sad and well on their way out. Isn't this one big Fiona Fox pity party?

 

[Countrygirl]

“It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”

I hadn't heard of that one before!

............armed????............oh, yes,...............one coffee cup!

For goodness sake!..........they make themselves sound ridiculous............. and increasingly so as the truth is peculating through into the public domain

I'm posting the comment @lilpink mentioned above as it has a lot of good info in one document:

1. Scary vocal critic says:

September 29, 2017 at 5:59 am

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 Pprogramme. 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...lation-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/w...arch-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 Mary University of London EA-2015-0269 (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/cg...3-4602203537/chapter/how-we-made-the-decisionhttps://www.thetimes.co.uk/edition/...s-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.

Reply

 

[Londinium]

Scroll to 'Scary Vocal Critic'. Now that's what I call a 'comment'. SMC are losing their own plot... it was always decidedly bizarre (a bit like Bobby in the shower ) ... now they're looking sad and well on their way out. Isn't this one big Fiona Fox pity party?

I was just about to say something similar - the second comment down is such a wonderful fisking that I didn’t feel the need to comment under the blog itself. Indeed, I hope there are few other comments because there’s little more to add and then they won’t then be able to claim being besieged by ‘ME activists’.

It seems the BPS crew have overreached. By reporting a positive result for something that other scientists would consider overt quackery, they’ve raised questions over their promotion of earlier trials into ‘more scientific’ approaches like GET. This blog is a definite case of methinks the lady doth protest too much - its defensive tone speaks volumes to the response they must have got from the Lightning Process trial.

 

[Jonathan Edwards]

"Gibberish"

 

[SilverbladeTE]

SMC....Goebbels and Pravda must be so proud of their evil stepchild!

 

[SilverbladeTE]

"Gibberish"

with a side order of "ass to mouth"

 

[Jonathan Edwards]

I wrote to David Colquhoun to see if he was interested in getting involved in pointing out the nonsense of PACE maybe a year ago. He seemed to feel he wanted to leave ME alone. It is interesting to see that he is now voicing his concerns about SMC in this context. David is a huge powerful quack-buster. Maybe what has changed is that the BPS crowd are taking up old fashioned quackery. I assume the piece is written by somebody with an admin role like Fiona Fox. It is laughable.

'Common to each case is the issue of what the SMC should do when faced with findings that can be misused or misrepresented by others.'

Wake up sweetie!

It's unravelling just the way I hoped it would.

(Rubs hands with glee.)

 

[Orla]

The comment about climate change is very interesting, and sounds like they basically misreported there to. Really any paper is science should be put in context (e.g. if you have 100 papers saying one thing and one paper saying the opposite this should be noted as the one paper could be an anomoly, poorly done etc).

Jonathan Leake says:
September 29, 2017 at 12:54 pm
Why are you being criticised? The research paper and press release were very clear that the research, was based on highly technical computer modelling, and had produced highly nuanced results – as one would expect.
The published paper said “limiting warming to 1.5 °C is NOT YET a geophysical impossibility, but is likely to require delivery on strengthened pledges for 2030 followed by challengingly deep and rapid mitigation.”
That seems pretty clear that there’s a little more room for hope – but not much. As everyone knows, greenhouse gas emissions are still RISING – so this research is very theoretical anyway.
My comment would be that anyone reporting this should have referred to the PEER-REVIEWED paper.
My question would be, given this was technical, theoretical and almost irrelevant (since there’s no sign of greenhouse gas emissions declining, let alone at the rate needed), why did you hold a press briefing anyway? There’s any number of these modelling papers … But even though you did, it’s down to journalists to get it right.

Here’s the actual abstract
Abstract•
The Paris Agreement has opened debate on whether limiting warming to 1.5 °C is compatible with current emission pledges and warming of about 0.9 °C from the mid-nineteenth century to the present decade. We show that limiting cumulative post-2015 CO2 emissions to about 200 GtC would limit post-2015 warming to less than 0.6 °C in 66% of Earth system model members of the CMIP5 ensemble with no mitigation of other climate drivers, increasing to 240 GtC with ambitious non-CO2 mitigation. We combine a simple climate–carbon-cycle model with estimated ranges for key climate system properties from the IPCC Fifth Assessment Report. Assuming emissions peak and decline to below current levels by 2030, and continue thereafter on a much steeper decline, which would be historically unprecedented but consistent with a standard ambitious mitigation scenario (RCP2.6), results in a likely range of peak warming of 1.2–2.0 °C above the mid-nineteenth century. If CO2 emissions are continuously adjusted over time to limit 2100 warming to 1.5 °C, with ambitious non-CO2 mitigation, net future cumulative CO2 emissions are unlikely to prove less than 250 GtC and unlikely greater than 540 GtC. Hence, limiting warming to 1.5 °C is not yet a geophysical impossibility, but is likely to require delivery on strengthened pledges for 2030 followed by challengingly deep and rapid mitigation. Strengthening near-term emissions reductions would hedge against a high climate response or subsequent reduction rates proving economically, technically or politically unfeasible.

Reply

 

[Wonko]

Maybe the whole thing, the whole of the last 40 years, is some sick long term experiment/joke into social something or other by psychologists, or maybe it's all been a $1 bet. That they are now tiring of, that has ceased, even for them, to be funny, hence pushing to the extremes of quackery to see how long it takes the world to catch on and call them on it.

Possibly something along the lines of just how gullible is the human race. What absurd things can we say (e.g. there's a condition defined by exercise intolerance, let's prescribe exercise for it, surely no one will fall for that), how far into policy can we get before they catch on we were joking etc.

 

[Barry53]

There doesn't seem to be an author listed for this piece? Is it Tom Fielden I wonder? He tweeted it out.

It is Fiona Fox's blog. Would she have someone else author an article on her blog without clarifying it was not her?

 

[Orla]

It is Fiona Fox's blog. Would she have someone else author an article on her blog without clarifying it was not her?

You are right, I couldn't see where there was any author on the piece (I see it is on the upper right corner). Thanks.

 

[Jonathan Edwards]

Maybe the whole thing, the whole of the last 40 years, is some sick long term experiment/joke into social something or other by psychologists, or maybe it's all been a $1 bet. That they are now tiring of, that has ceased, even for them, to be funny, hence pushing to the extremes of quackery to see how long it takes the world to catch on and call them on it.

Possibly something along the lines of just how gullible is the human race. What absurd things can we say (e.g. there's a condition defined by exercise intolerance, let's prescribe exercise for it, surely no one will fall for that), how far into policy can we get before they catch on we were joking etc.

I think it is simpler. As the Queen said, 'there are dark forces at work'.
She should know.

 

[Jonathan Edwards]

And Fiona Fox forgets to mention that one of her own 'experts' effectively said that SMILE was a load of pseudoscience. Maybe she does not read the stuff they put out - just assumes it is on message.

 

[Barry53]

You are right, I couldn't see where there was any author on the piece (I see it is on the upper right corner). Thanks.

And if you go here ...

... it takes you to her blog home page.

 

[Sean]

“It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”

They are right to be scared of us. We are 'armed' with the most terrifying weapon of all to abusers of power: The truth.

All the abusers have is yet more spin, smears, and straight lies.

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

Judges. The tribunal's rejection of the harassment claim was unanimous and unambiguous. No dissenting opinions or caveats.

The highest formal legal ruling on that claim found it completely baseless. No way around that.

 

[Barry53]

We are 'armed' with the most terrifying weapon of all to abusers of power: The truth.

Quite so. Their dam of lies is increasingly giving way, and the truth is pouring through cracks evermore rapidly. This dam that they have built and comfortably relied on for so many years, now has so many breaches in it, they can no longer stem the ever increasing truths that are flooding through. Soon their dam will hopefully collapse into rubble.

 

[Woolie]

It seems the BPS crew have overreached. By reporting a positive result for something that other scientists would consider overt quackery, they’ve raised questions over their promotion of earlier trials into ‘more scientific’ approaches like GET. This blog is a definite case of methinks the lady doth protest too much - its defensive tone speaks volumes to the response they must have got from the Lightning Process trial.

I agree, @Londinium. The LP trial was actually a gift to us in a way. It just makes the whole psychological crew look ridiculous. SMC played their hand badly here. The best approach would have been to say nothing about the SMILE trial.

 

[Sean]

SMC played their hand badly here.The best approach would have been to say nothing about the SMILE trial.

Yeah, I am still trying to figure out what they gain by even mentioning it, let alone promoting and defending it so extravagantly.

If ever there was a BPS research story for them to completely ignore, this is it.

Shows either their lack of genuine scientific understanding, or overconfidence in the power of their propaganda machine.