To continue the meme relating to the media’s inadequacy when it comes to coverage of ME matters, I shall mention the PACE trial*, a study unique in its lack of scientific rigour and general awfulness. If it weren’t for NICE using the trial as a guide on how to mistreat ME sufferers and the abysmal way it was reported in the media, thanks Science Media Centre (more on them later), PACE would be an ‘amusing’ tale of a group of psychiatrists managing to obtain £5 million pounds from the British taxpayer for a trial that was scientifically flawed in every way imaginable. One can only assume that the large amount invested, including uniquely, money from the DWP, and the people involved are the reason the medical establishment resolutely defends it from criticism.
I’ll describe the ‘methodology’ behind PACE using the well-known and beloved tortoise analogy. If, following a period of GET and/or CBT, a 97 year old tortoise that has recently undergone a triple heart bypass, not the most active of animals, declines to the activity level of a 100-year-old tortoise that’s undergone a quadruple heart bypass operation, under PACE criteria, that would be accounted a success. This is pure genius, no longer does a medical therapy have to produce improvement to be successful. Take a drug for cancer or heart disease and get worse, possibly even die a few months earlier than would have been the case without medical intervention, and hallelujah, prepare yourself for a glowing piece in The Lancet or British Medical Journal extolling your brilliance. That may not be enough for your ever-expanding ego, in which case establish a new organisation, shall we say, purely off the top of my head, ‘Sense about Science’ (great name) which awards brave and noble scientists for their contribution towards sensible, rigorous scientific endeavour. Place yourself on the governing committee of said organisation (ensuring the other committee members are old chums it doesn’t work otherwise) determining who gets said award and name yourself the first recipient. I know, it could never happen….**
Ted Silverhectare***, who justifiably attacks the pharmaceutical industry, detailing their various misdemeanours in an erudite and intelligent fashion seems to have a blind spot when is comes to PACE, assuredly nothing to do with his being a psychiatrist. For all its problems the pharmaceutical industry has produced many drugs of lasting benefit to humankind, I struggle to name any benefits to humankind provided by psychiatry though I have tried.
Many have attempted to bring to Silverhectare’s attention, the numerous flaws, inaccuracies and the downright dishonesty presented by the PACE trial but so far to no avail; possibly they’re beneath his notice. After all, a doctor with an inflated ego is as common as a crooked politician and anyone with that hairdo has long ago ceased worrying what mere mortals think of him. It is probably too much to expect independent, critical thinking from a Wessely acolyte like Silverhectare, though as he takes himself and expects to be taken seriously, it would be nice.
The scientific illiteracy of your average journalist, a GCSE Science dropout with a degree in Golf Studies who wouldn’t know the difference between a quark and an enzyme, guarantees most science stories avoid critical analysis. This enables something as inherently unscientific as PACE to pass muster as far as the British media is concerned, exposing the public to delightful newspaper headlines including, ‘Got ME, just get out and exercise’. If only… Media involvement was restricted either to acclaiming the study or attacking those ME patients or specialists who dared to point out its flaws, though you know the trial’s supporters are on shaky ground when they have to wheel out the likes of Rod Liddle, a non-scientist (naturally) right-wing provocateur, to direct his vitriol at the ME community.
The PACE trial represents everything that is wrong with ME research in the UK. That a group of psychiatrists, who’ve been pushing the same, long ago disproved, psychogenic model of ME, can gain £5 million for such a poorly designed and scientifically unsound study is nothing short of a disgrace. That it received so positive a reception from a primed, incurious and compliant media only compounds matters. It is unfortunate and immoral that it has been left to the ME community, a group of severely ill people, to expose PACE for the scandal that it is.
*Many others have described the various problems with PACE in far greater detail than this short blog post, Tom Kindlon in particular has exhaustively detailed its shortcomings.
**I realise Wessely wasn’t a published author on the PACE trial but I think his involvement in some way or other can be taken for granted
***Possibly based on a real person