When you really cut to the chase — you know I'm yelling at you to keep walking around the block or jogging or whatever, you can do it in this illness.
and I'm yelling back - of course I've tried exercising my way out of this! It was the first thing I did. And it just consistently made things worse. And yes, for many of the 10 years I've had this illness, I've walked the dog each day, more than walking around the block. But, I'm still sick. As soon as I go over whatever my threshold is, I'm in a world of pain and exhaustion, sometimes for days.
It's the arrogance of it, when patients, when patient organisations, many clinicians are all saying 'no, exercise doesn't work'. Surely if it worked, there wouldn't be all the opposition - it's arrogant to assume that we are all so hopeless that we would rather stay sick for decades than just walk around the block a bit more.
And yes, there's no evidence for exercise even helping, let alone being curative, NICE couldn't find any evidence. What is the block in this man's mind that he can't see that? Other than, I suppose, a career of telling people that exercise works, a fatigue clinic associated with him that pushes that idea, a whole lot of friends that create a bubble of BPS thinking impervious to reality?
He gives muddled definitions of what CBT and GET are or are doing, even framing CBT as "graded exercise for the brain".
I think he talks about graded exercise training and cognitive exercise training - the latter being "graded exercise for the brain" - so I think he sees the CET as different to CBT. He sees the GET and CET as 'desensitisation paradigms' - because the brain has somehow become too sensitive. He does talk about a package of CBT and GET as being just being management but then suggests that it will gradually improve function. So yes, it is muddled.
He talks about his efforts to educate allied health professionals about his CBT, GET programme - it works, but it's not curative, he says, there's plenty of room for improvement. He mentions that drugs that act on the brain that might help with the desensitisation programmes - I presume he means stimulants but he doesn't say, to modify the exacerbation of fatigue after exercise, 'to help us move forward with our desensitisation programmes more actively and efficiently'.
Another bit that was really bizarre and awful from about 28 minutes:
Lloyd: Perhaps the only other thing, it's a sort of sociopolitical comment.
Interviewer: Go for it
Lloyd: And that is, I think, for better or worse, I think we have to recognise that there is controversy and how the medical community responds. You probably know this, but it was a patient consumer group who lobbied the NHMRC to set up an expert advisory committee and then report to the CEO about what they, I think, rightly perceived as inadequate health service delivery and inadequate biomedical research for this condition in Australia, so that happened last year. And in response to that expert advisory committee, umm, the CEO has put out a targeted call for research, put forward some funds to support Australian research and has also prioritised some of those things that I mentioned like education, but also has prioritised a health economics study to understand how big a cost this is to the community. It would be fair to say though, in that process, it has become, if it wasn't already, pretty apparent that there are, umm, members of the consumer community that, umm, ah, feel not well looked after by the health services and are moving to rather alternative realms, and, as in non-evidence based treatments, and also are very actively critical, not necessarily in a rational sense, but are actively critical of some of the mainstream services and the research programmes. And so, for better or for worse, I think we have to recognise that that is part of the community's response. Something akin to climate change denial versus acceptance. So we have to recognise that and respond as well as we can to that as a scientific medical community.
It is with some satisfaction that I note that Lloyd's group didn't get any of the research funding that he mentioned was being distributed in 2020.
are moving to rather alternative realms, and, as in non-evidence based treatments, and also are very actively critical,
Something akin to climate change denial versus acceptance.
Hmm, maybe Professor Lloyd, people in glasshouses shouldn't throw stones?
(crossposted with Sid)