Thanks Cort, for analysing the paper properly. Sadly, there don't seem to be many other journalists out there worthy of the name. I haven't seen any newspaper noticing how dramatically the PACE trial has flopped: "Get out and exercise, say scientists" is the order of the day, across all papers.
They can manipulate the definitions and stats, and desperately spin the results as much as they want, but by any vaguely rational, empirical, and ethical real world standard these remain truly pathetic numbers, that simply do not deliver any practical, meaningful improvement whatsoever in the health or social and economic capacity of patients.
Yes Sean, and thank you again for the positive spin I need so much right now. However, I'm afraid that the following is also true as a corollary, and I have to put it this way:
"By any vaguely rational, empirical, and ethical real world standard these remain truly pathetic numbers, that simply do not deliver any practical, meaningful improvement whatsoever in the health or social and economic capacity of patients. But they can manipulate the definitions and stats, and spin the results as much as they want."
Getting really good evidence that CBT and GET are next to useless (where useless is defined as "normal 'care' from CFS specialist centres in the UK"), and getting this evidence direct from the proponents of CBT/GET themselves...even this is not new. I fear we may be naive to place our hopes for any enlightened change in policy on an understanding of the science (assuming of course that we accept that this paper is science, and its authors are scientists - which personally I do not).
Just as journalists worthy of the name apply a sceptical attitude and strive to dig beneath the surface of claims made by those with vested interests, scientists worthy of the name do not twist and manipulate their own science, move the goalposts halfway through, and manipulate the media in order to convey a message in support of political goals.
When I see behaviour such as that observed in the PACE trial - the grossest of many examples being the decision to stop using actometer data halfway through because that data would have proved the purported benefits of the therapies to be illusory - then I am reluctantly compelled to observe that the clearest evidence-based conclusion I can reach from this study is that its authors are fraudulent, and that their aim is deception, in pursuance of their own interests, their own prejudice, and their own hidden agendas.
And just as when I learned that the UK's Science Media Centre - whose job it is to 'help' the British press to put published science in its proper context - is run by a group of former revolutionary communists with a publicly stated agenda of defending science itself by suppressing information about the victims of scientific progress (see LobbyWatch, Martin J. Walker, and the history of Living Marxism magazine and its online reincarnation Spiked)...and when I learned that the SMC advisor to the media in areas relevant to us is one Simon Wessely...I find myself wondering whether those of us who believe in science can afford to trust that what our newspapers call 'science' still deserves that name in a world where the dominance of insanely powerful financial vested interests distorts the playing field so severely.
I would like to simply take the paper at face value, as Cort has done, and celebrate what the paper actually proves: that CBT/GET delivers an almost-negligible benefit to a small proportion of people wrongly diagnosed with ME/CFS, and that the UK's "specialist care centres for CFS" are even less effective than CBT and GET at delivering benefits to UK patients.
But when the paper's authors have redefined a disease themselves in such a way as to exclude people suffering from the disease and include people who do not have any of the major symptoms of the disease; when they have manipulated their protocol to remove the physical evidence which would have shown that their findings were an illusion; when they have defined 'normal treatment' as the treatment available at specialist centres shunned by most people with ME/CFS; when they have invented their own concept of 'pacing' to mean something that is nothing like 'pacing' and then used this study to claim that pacing doesn't work; when they have re-defined recovery and meaningful effects halfway through their study; when they have used the most fatigued 15% of patients seen in GPs' surgeries to define a 'normal' level of fatigue; and when they are psychologists who have performed all their analysis using their own questionnaires which they are masters at manipulating in ways that I cannot hope to unravel...when they do all these things, the fact that they
still can't deliver more than a tiny improvement in those questionnaire scores they decide to publish seems to me far less significant evidence than the abundant evidence that the study's authors are frauds and charlatans.
Is CBT an effective treatment for some people diagnosed with ME/CFS? It seems totally unreasonable to most people to question that these therapies can be helpful to some people. "Nobody is claiming it cures you," they cry, "but there is plenty of evidence that it helps some people, and it's the best we've got - so why on earth are you so implacably opposed to something that might help you?"
I am opposed to it because it was no help whatsoever to me: talk therapy was as harmful to me in relation to my mystery illness as it was helpful for coping with and then overcoming clinical depression. I am resistant to accepting that CBT is a useful option because the evidence only shows that a small proportion of people with my illness tick boxes on questionnaires to say that they thought it helped a tiny bit. I am sceptical as to whether it really does help people because the only evidence I've seen regarding whether it really
is helpful (the Dutch study) shows that although people reported an increase in their physical activity, the suppressed actometer data reveals that their physical activity had
not increased.
So I am reluctant to give ground and accept that there is a role for therapies like CBT in managing chronic illness because it seems crystal clear to me from all the available evidence that what these therapies achieve is simply to persuade people to con themselves into believing they are a little bit better...or perhaps even less than that: CBT can reprogram patients who are asked "How do you feel?" such that they are more likely to say "Fine, thank you".
I am not into self-delusion: most people might not make this choice, but I want the
truth, whether it makes me feel happy or not. I don't want to be reprogrammed so as to imagine that my problem is less serious than it is, reprogrammed to accept my illness, reprogrammed to tell everybody that the reprogramming was helpful to me. Reprogramming myself to help myself escape the spiral of depression is one thing; reprogramming myself to deceive myself about my physical illness is quite another.
And I don't want to be reprogrammed by people who have stated repeatedly that they don't believe the cause of my illness will ever be found; people who have blocked any attempt to investigate the physical aspects of the illness; people who have massive influence over what all the newspapers in my country say about my illness; people who are exposed as liars and frauds to anyone who has eyes to see and a heart to care.
And I don't think I would serve my fellow men and women well by accepting this tactical retreat and conceding that there is a place for these charlatans in the therapeutic process, most especially at a time when they are poised to roll out a massive expansion of their services in place of genuine medical services and in place of genuine medical research. I think I would be remiss in my moral responsibility if I put to one side what I have learned about the methods of these crooks as a tactical measure in order to gain wider credibility.
Positive thinking is a very popular philosophy. "You can do anything you want if you put your mind to it" is a lie heard all too often, and one that people who favour truth rather than self-interest cannot accept. The corrolary - "You failed because you didn't try hard enough" - is an insidious consequence. Such philosophies based on self-deception are in the interests of the haves who need to believe they
deserve their good fortune, and they play into the hands of those who wish to blame and punish "have nots" for not having anything.
So I will want to be clear in future, if I
am going to accept that there is a place for CBT in the management of chronic illness. I will want to offer advice about the subject that is rational and evidence-based whilst respecting the right of the individual to make their own decision - like this:
"There is some limited evidence that a small proportion of people with chronic illnesses who undergo CBT say afterwards that they believe that it helped them. In the case of ME/CFS there is very little evidence as to whether these improvements they believe in are real or illusory, but what little evidence there is suggests that patients are more likely to say that the CBT increased their activity levels even though objective measurements show that their activity levels are unchanged.
For what it's worth, in my personal opinion CBT does nothing but help you to deceive yourself and others that you are not as sick as you really are, and only a minority of people are capable of this self-deception and content with employing that strategy. But if you personally feel comfortable with deceiving yourself in this way in order to feel a little more positive about life, then that therapy - unlike the more effective treatments that researchers refuse to study and are in the process of making illegal - is freely and widely available to you in the UK. Since you pay for the availability of that treatment through your taxes whether you like it or not, it is entirely up to you to decide what you want to do."
What have we learned about ME/CFS from the 5m PACE trial? Nothing that we didn't know before: CBT/GET are crap treatments that only deliver small imaginary benefits; the UK's "specialist treatment centres" are even worse and are rightly shunned; psychologists are allowed to continuously move any and all goalposts and define "pacing" as "not pacing" and use that sleight of hand to claim that pacing doesn't work; and more research is desperately needed.
Real research, though. By honest people, and by scientists next time, please.
