Geocentrism and PACE – both on the wrong side of science
Thank you to Ella Peregrine for kindly allowing us to republish her facebook post on #MEAction
Recently, David Tuller, James Coyne, Vincent Racaniello, and some other non-invested scientists and writers have been looking more carefully into the claims and relative lack of transparency of the UK’s expensive and influential PACE trial. Those interested in the question of data sharing in research have been drawn in, because of the ongoing refusals by PACE researchers of requests for de-identified data to analyze. Last week quite a stir was raised when Nature published an argument for avoiding data sharing in which patients and scientists questioning the claims made by PACE authors were equated with tobacco industry supporters and climate change deniers. Although the editorial was not written by a member of the research group responsible for PACE, there are traceable connections between the authors.
Following their ongoing (and previously very effective) narrative of victimization and infallibility, the PACE defenders have made a quantum leap in their willingness to twist reality to serve their purposes. Climate change deniers and tobacco control opposition are funded by the deep pockets of industries under threat from emerging science, and represent the status quo of money and power in their respective fields. White, Chalder, Wessley and company have much more in common with climate change deniers (aka the fossil fuel industry) financially, culturally, and politically, than with the scientists desperately trying to illuminate an emergent and critical threat to life and health.
The PACE group has been buttressing up their version of reality for years, against substantive and copious emerging science showing that their stance is at best ineffective and at worst, extremely harmful. This has been done largely through unsubstantiated claims of being attacked or harassed, and never with purely objective findings. Their contention is that ME and/or CFS, (whichever disease they’re claiming to study at the time) are caused by “false illness beliefs” – that these diseases are primarily treatable with exercise and psychological training to ignore physical symptoms. Further, their research outcomes are used to cement policy and public belief that prevents insurers, other researchers, the government, physicians and family members of the sick from looking beyond the psychological for etiology, treatment, or support. These claims and the way they are backed up by the medical, political, and insurance-industry establishment are causing untold suffering and costing patients their lives.
This idea that patients and scientists who question the strength and legitimacy of the PACE claims are somehow like the tobacco industry, though, it just had to be addressed. Finally, the appropriate analogy arose. This group of psychologists, without any actual proof that “false illness beliefs” can even be the cause of the disease called ME or CFS, they are like the Catholic Church in the time of Gallileo. They just “know” (believe!) that they’re right, and they’ve been telling everyone who will listen this same story for years, insistently, without even an iota of credible reflection on evidence to counter their belief. What’s even more important, public policy is based on their “facts” – which are unassailable so long as they can keep those data hidden. Ironically, despite their self-identification as scientists, they are behaving like the power structure of the church – trying to silence or excommunicate anyone who crosses them, and hiding evidence that their claim of divine knowledge may in fact be incorrect. But the church didn’t stand alone, and neither does this group. The government, the media, the insurance industry – all collude in this story-telling, this clinging to an incorrect belief in the face of mounting scientific (biomedical, not psychological) evidence.
If PACE has to be retracted, so will many other papers. A knighthood may be rescinded; high-paying insurance industry consulting fees may be lost. Expensive medical research will have to be funded, insurance companies and social support networks will have to acknowledge that the disability is legitimate, and patients will have to be treated with the respect and care that sufferers of diseases like cancer and MS receive. Their defensive clinging is to power, status, and money, not to truth. If they wanted truth, they’d release the data. Eventually, as with Galileo, science will win. The question now is, how long will patients be left on the rack of medical neglect due to this rampant anti-science belief, and how many more will die, before the unscientific claims of PACE will be torn down?
We know the earth isn’t flat, and we know that exercise doesn’t cure people with ME. It’s just a matter of time before the power structure lets go of the second false belief.