It was an annoying way to phrase it.
Or a deliberate rhetorical trap, a shabby double-bind framing that denied
a priori the possibility that critics could be right in their criticism and scepticism. Especially if they are also patients. Merely opening our mouths for anything but complete agreement made us guilty in your eyes, regardless of what we actually said.
You are asserting that because we don't accept a brain retraining type claim, in full or in part, therefore we are biased against it possibly being true.
Rubbish.
What we are strongly biased is against shitty methodology, and weak unjustified and potentially dangerous claims based on it, regardless of the flavour of the claim – biological, psychological, cultural, spiritual, whatever. As should be anybody who is claiming to be conducting robust critical analysis. Of being, dare I say, a genuine truth seeker.
We practice what we preach on that standard. For example: There were high hopes in the patient community, including here on S4ME, a while back that the early promise of Rituximab would hold up. But sadly the methodologically robust phase 3 trial by Fluge and Mella failed to bear fruit.
You know what happened then? How the patient community responded? We accepted that it had been adequately tested and had not worked out, and moved on. How does that response work with your claim of our overwhelming irrational bias in favour of biological explanations and treatments, and against psycho-behavioural-cultural-spiritual ones?
You know what else that trial robustly demonstrated? The clear substantial discrepancy between objective and self-report subjective outcome measures. Meaning that the self-report subjective measures were unreliable and highly misleading. If the reported outcome had been determined by those measures then the conclusion of the trial would have been the opposite, completely false, and done serious damage.
Do you know why we practice that standard? Because we come to understand early on that it is the only way to find actual meaningful solutions, whatever they turn out to be. That understanding is hard earned. We have paid our dues for it.
I look forward to the day brain retraining claims are subject to such rigour and honesty by its advocates. That is all we are asking for.
-----
As to our political influence: Are you seriously claiming that our mere criticisms and complaints, independent of their validity, were enough to mislead and persuade NICE, IOM, AHQR, IWIG, NHMRC, and other major medical institutions around the world, into independently abandoning robust science and make spurious findings and illegitimate recommendations in our favour? Just because we asked them to, and sold them a good sob story?
In which case you should level those charges against them, and demand an explanation, even a retraction of their reports and recommendations and their resignations in disgrace at being so easily swayed by emotion and irrationality.
Good luck with that. Do keep us informed of the outcome.
The blindingly obvious truth is that we have only the power of evidence based argument. If anybody is the political underdog in this fight (and then some) it is us, not your long reigning brain-retraining pals, in whatever guise they present their claims this month, and no matter how much they whine and posture about 'The Truth' being repressed by those nasty all-powerful, biomedically obsessed, ungrateful bastard patients who just won't bow down and accept the edicts of their brain retraining overlords without question or complaint and get better upon command.
--------------------------
The idea that 'mind body techniques help cancer' have harmed people with cancer,
Steve Jobs, of Apple fame, won the cancer treatment lottery by getting a rare early diagnosis of one of the more treatable forms of pancreatic cancer, a otherwise notoriously difficult to treat group of cancers, in no small part because they are very hard to diagnose early. His diagnosis was an incidental fortuitous result of a scan for kidney stones.
But he then completely wasted that precious gift from medical science and sheer good luck by insisting on eschewing mainstream medical recommendations and pursuing 'natural alternative' treatments. Ended up regretting it deeply when he realised too late what he had done, and died at 54, potentially decades before he could have, without seeing his children grow up and leaving them fatherless.
Woo maims and kills. Willing suspension of disbelief only works in fiction. In real life it rarely delivers the goods, and the price for its many and predictable failures can be very high indeed.
How many years of this seems reasonable to you? Decades?
Not to mention how many more thousands of our already extremely limited funds?
The vast majority of us, especially long termers, are in dire financial straits, with little prospect of that changing, and indeed only likely to get worse in the deteriorating general political and economic climate of the times. We have to make very hard choices and tradeoffs, and incur potentially very high opportunity costs, with every penny we spend, every day of our lives. Wasting it on yet another piece of pseudo-medical woo is not high on that list. Or even on it at all.
