By David Tuller, DrPH
I have called the PACE trial of graded exercise therapy (GET) and cognitive behavior therapy (CBT) for ME/CFS “a piece of crap.” As I have indicated over the years, I think the trial is an example of serious research misconduct. (Whether it meets legal definitions of “fraud” is beyond my professional expertise, but I wouldn’t be surprised if it does.) According to Fiona Fox, director of the Science Media Centre (SMC) in London, these public expressions of my distaste for PACE make me a Nazi. Or Nazi-like. Or legitimately comparable to Nazis.
In a widely hyped new book–“Beyond the Hype: The Inside Story of Science’s Biggest Media Controversies”–Fox recounts her escapades as the head of this purportedly neutral science communications agency. As anyone who has followed events in the ME/CFS world knows, the SMC, founded two decades ago, has played an influential and unfortunately negative role in shaping how the British press has regarded and covered the ME/CFS saga. Chapter 3 of Fox’s book involves what the subhead calls “the bitter row over ME/CFS research.”
The title of this chapter–“First They Came for the Communists”—leaves little doubt about Fox’s perspective. That phrase is the opening line of one version of the famous anti-Nazi statement or poem by Pastor Martin Niemöller. In the statement, the identity of the ominous “they,” a pronoun repeated in line after line, is understood but never explicitly named.
The title of this ME/CFS chapter thus frames patients and advocates–those challenging the hegemony of the GET/CBT ideological brigades—as current incarnations of the “they” in question. That is, Fox is portraying them as Nazis. Among her litany of the indignities and purported persecution visited upon the eminent investigators lauded by the SMC, Fox includes my description of PACE as “a piece of crap.” So that seems to make me a Nazi, too.
Professor Sir Simon Wessely has protested in the past at being compared to Dr Mengele—and rightly so. In her ME/CFS chapter, Fox highlights and condemns this unsavory and unacceptable insult. Like Simon, I have family members who were killed in the Holocaust; in my case, Jews from what is now western Ukraine. Like Simon, I find being compared to Nazis offensive. I also find it offensive that desperate, very sick patients, whether Jewish or not, are being compared to Nazis. Fox and her editors, however, apparently think these Holocaust comparisons are appropriate and within rhetorical bounds.
The chapter contains few surprises. Fox tips her hand at the start when she writes that the ME/CFS story is a “cautionary tale of what happens when good medical evidence is attacked and misrepresented.” That’s the problem—Fox believes that PACE and related studies are “good medical evidence.” She believes that patients are “attacking” this research for no rational reason and are “misrepresenting” it when they say it stinks. She doesn’t question her assumptions or examine the actual facts in dispute. In short, for someone keen to present herself as an intellectual player, she seems remarkably uncurious
So Fox ignores evidence that undermines her case. She does not mention, for example, the open letter to The Lancet–signed by 100+ experts from Columbia, Harvard, University College London, Queen Mary University of London, and other leading institutions–which slammed the PACE trial’s “unacceptable methodological lapses” and requested an independent review of the data. Are all of these eminent signatories Nazis, in Fox’s view? How about my UC Berkeley epidemiology colleagues, who have used the PACE trial in graduate seminars as a case study of terrible research?
Obviously no one should perpetrate or promote harassment of scientists. (It must be noted, however, that definitions of “harassment” differ.) But it is disingenuous for Fox to conflate criticism of the GET/CBT research with the alleged aggressive and disturbed actions of what would seem to be a tiny minority of patients or others struggling with mental health issues.
It also goes without saying that no one should perpetrate or promote what appears to be research misconduct. It is a disservice to the debate for the ME/CFS chapter in Fox’s book to overlook or ignore, among other PACE deficiencies, this salient paradox: At baseline, 13% of the participants had already met the outcome threshold for physical function, and some had already met the outcome thresholds for both physical function and fatigue.
The PACE investigators have never adequately explained why some trial participants were “recovered” for key measures before they received any treatment at all. This bizarre anomaly alone should have rendered the PACE papers unpublishable by any application of standard scientific principles. After all, patients cannot logically be both “disabled” and “recovered” on the same measures simultaneously–but in the PACE trial, they were.
Fox is silent on this and other matters related to trial methodology but very loud on whatever best suits her narrative.
Other perspectives on Fox’s book
Lucibee’s Blog has posted a short but smart and pointed critique of Fiona Fox’s book headlined “SMC uncritically reinforces the orthodoxy.” Here’s part of it:
“To be honest, I felt quite mean leaving a negative review on Fiona Fox’s recent book “Beyond the Hype: The Inside Story of Science’s Biggest Media Controversies”, because it does provide an interesting insight into the workings of the Science Media Centre (SMC). However, it also provides an insight into the hypocrisy of science media communication with regard to some issues, and one issue in particular, ME/CFS.
“Throughout the book, Fox clearly explains that the SMC’s role is to convey the scientific consensus to journalists in the mainstream media. However, what is not explained is how the SMC decides what that consensus is. This is problematic in areas of controversy, because although they may be uncritically reinforcing the orthodoxy, the orthodox view itself may not be correct, particularly if the proponents of that view are ‘a small and beleaguered group of scientists’…
“Just because a scientist is perceived as eminent and influential, does not mean they are always correct. A problem occurs when such a small group seeks to protect themselves from the more diverse group by actively seeking to limit criticism by denouncing any opposing view as “activism” or even “extremism”. The main failing here is that the SMC have defended a body of evidence without ensuring its veracity.”
Read the whole thing here.
And Amazon UK’s page for Beyond the Hype offers a range of negative comments related to the ME/CFS chapter. Here are a few:
“The chapter on ME/CFS appears to have a title relating to the behaviour of the fascists in the 1930s. Does anybody really still think this is appropriate? It looks like getting about as close to libel as you can. It is also rather reminiscent of recent reference to fascism by others – not simply hypocrisy but deliberate reversal of reality.”
“This should have been an interesting insight into the workings of the Science Media Centre.
Most of the controversies described are about protecting science from ideology. However, Chapter 3 seemed more concerned with protecting clinicians’ ideologies from being challenged by science, and showed what happens when science goes rogue under the guise of authority and medical power. No mention was made of the harm that has been done to patients as a result. A better title for that chapter would have been “First they came for the sick and disabled”.
“The SMC is an unregulated publicity machine that has been used to control the narrative around controversial science. With no checks and balances Fiona Fox was free to impose her own controversial stamp on what the general public were able to hear. A really shocking read for anyone who really understands what this achieved.”
12 responses to “Science Media Centre Chief Fiona Fox Compares ME/CFS Patient Advocates to Nazis”
Their flawed study and ones like it have effectively cut us off from biomedical research, financial assistance, and alienated many of us from friends, family members, and the public at large. And if we point out the flaws in their studies and the damage they are doing instead of refuting them with science and logic like other academic’s would do they call us militant and nazis and accuse us of not understanding them.
I’m appalled. Have the issues here been spelled out to the publishers/editors? They really need to be, I think.
There is nothing scientific or medically sound about any of the Psychiatric Collaborative diagnoses or labels when it comes to Myalgic Encephalomyelitis. They thrive on treatment based on outdated models of coercion and paternalism which are incompatible with meaningful help or human rights. Their time of gaslighting the patient is over and they hate Patient Advocates for educating the community. We can live with that.
The Science Media Circus has become one more hydra-head of Spiked, which originated in the remains of an erstwhile left-wing group that is now a hard-right outfit. Fiona Fox is the younger sister of Claire ‘Lady Brexit’ Fox, singing from the same hymn-sheet. The SMC, like all the Spiked subsidiaries, exists to push a hard-right political agenda, it is not a neutral body. That it defends the quack ‘it’s all in your head’ analysis of ME/CFS says it all: even the NHS has dropped it for its treatment of the illness.
I thought the UK NICE had knocked this off the recommendations
Jacqui, yes, they did. The chapter disputes the NICE process and suggests the agency caved to the militant patient lobby. So the NICE evaluation of the research base and its decision are part of the problem, according to Fox, and presumably that means NICE as an organization must be dominated by Nazis.
I can’t help wondering if objectors aren’t happy with the (arguably more democratic) NICE committees, rather than the NICE organization itself. I haven’t read all of the chapter yet – I’m still waiting for my copy to arrive – so I’ll be interested to see what point/s Fox is making about NICE. Does she mention specific things that she thinks should change with respect to the guidelines process or the organization?
EXCITING! job opportunity at the SMC – “Press Officer” … (SMC)
When I read it I wondered “are they going to start giving critics tickets” …
Rich that they’re calling their patients Nazis when they’re the ones who refuse to stop shouting ‘arbeit macht frei’ into the faces of their patients/inmates.
i have sent up a story to the SMC about Jen Brea. How did Jen Brea recover from severe ME. No one can. She claims it was CCI but she had had a thyroidectomy just before this and was probably on thyroid replacement therapy. So, I suspect she was hypothyroid not CCI. My views are my own. This is such a massive story yet David Tuller has missed it.
I’m not surprised by this, it appears that the SMC employees continue to be a mouthpiece of “established medical theories “.
How much longer can they continue to prop up discredited research? Until doctors understand that this is a complex illness and people’s lives are hugely impacted by it, they will not give much weight to up to date research. The Bps lobby is still unable understand how much damage they have done.