I’m sure I’ve said this before but in a movement for change you need mainstream people and more radical people. Change comes as a result of a combination of both. The demands of radical people make the mainstream approach look like a better option to those resisting change.
In some ways I agree, but I think that there are unusual difficulties around ME that make that sort of dynamic eve more difficult to pull off than it has been in other circumstances. I think that we need to be 'radical' in our aims, but also cautious and restrained in our methods.
There's an unusually high cost to certain sorts of 'radicalism' for us.
egs of why I think it's hard for us to adopt strategies that have been useful for other groups:
- We really have very little power. We don't have a load of health people happy to cause trouble and disrupt those who are trying to ignore reasonable concerns.
- We're really actively working against the interests of a lot of the people who have power over us. Also, if we win on an issue like PACE is is going to be humiliating for entire institutions and systems. There's no real way of making progress with a compromise on a lot of these issues and there best tactic is to try to smear all their critics as radical and unreasonable.
- What we're doing is weird and unusual - a patient led movement pointing out that the 'experts' in a field of science have been doing poor quality work that exaggerates the benefits of supposed treatments is not the usual way of doing things. More often it's patients desperate for 'hope' being told 'no real evidence' by rigorous scientists.
- The fact that CBT and GET are often viewed as 'psychological' therapies means that any criticism of CBT/GET research can be presented as driven by an ideologically driven opposition to a psychological understanding of ME by those who hold stigmatising views about mental health problems.
- Also, ME being viewed as a mental health problem serves to help justify stigmatising views of patients critical of work like PACE.
- The 'angry, unreasonable activists' meme is popular amongst a lot of people and they feel able to justify dismissing patient concern by just using rare examples of people crossing the line.
- and so on, and so on...
It seems that for a lot of the people with power, criticising PACE/Wessely/etc is 'radical'. To speak honestly of the problems around ME/CFS is to be outside of the 'mainstream' in an important sense, and that makes it very difficult to get the 'good cop/bad cop' dynamic that is a part of a lot of advocacy efforts.
This is all very irritating. For me personally, I hate being polite, especially by the appalling standards of the UK Establishment. But at the same time, I've seen how almost any sort of 'rudeness' is used against us. The fact that people who've been so badly mistreated are expected to be consistently polite in their criticisms of those who've behaved badly is shameful - but again, if we want to make progress I think that we need to make our criticisms of even that in a restrained and polite manner.
PS: I'm still half asleep.
