What I wrote was: At some point, if the needs of a particular patient group are being consistently presented as being uniquely neglected while others are being delivered effective care.
Of course something the size of the NHS will contain numerous inequalities in which entire patient groups are handled well below the mean of delivered care. The question is not whether one should meekly accept such inequalities but how to address those inequalities. To present M.E/CFS patients as uniquely suffering is not only inaccurate, it is presentationally insupportable, because no one outside these narrow forums will take it seriously.
It was the 'uniquely neglected' part which made me think it was a rather unfair strawman. CFS patients and organisations are not consistently arguing that CFS patients are uniquely neglected! There are unusual challenges to CFS which pose fairly unique challenges, but there are other conditions with similar problems, and even conditions which are generally treated well still face many similar problems to that faced by CFS patients. I
Well yes, that’s the whole disadvantage of having an illness that is readily ‘psychologised’ – in which case it would be smart to not engage on territory that allows confirmation of that prejudice. We are not, and never will be a group that attracts ready public or political sympathy – advocacy that is seen to be mere wailing about how our lives are so awful and how the health service is unfair to us only serves to confirm the bias that we are the ‘undeserving ill’. Without demonstrably high mortality rates, fear inducing surgical and radiographic interventions or very poorly babies – we can never garner a sympathy vote – we therefore need alternative strategies.
I think it's a more mixed picture, and that lots of people are sympathetic to the uncertainty which surrounds CFS, and the willingness of some doctors and researchers to mislead and manipulate patients. As you've noted, the problems faced by CFS patients are not unique, lots of people have suffered from false reassurances from their doctors, recognise the innate uncertainty which still surrounds our understanding of many medical problems, and see how suffering from a poorly understood medical problem could lead to sustained manipulation and 'management'. I'm certainly not claiming that CFS patients are a popular group, but I think a lot of that is due to the name, the way in which the condition has been psychologised, and it has been claimed that there are effective treatments which patients reject because they refuse to accept the stigma of mental health problems (all these things coming from a small group of researchers with an interest in the importance of media presentations of illness). We actually have good arguments and compelling evidence to counter many of these claims - we just struggle to do so. I think that people with CFS are deserving of sympathy, and that if we are able to explain ourselves thatt he general public would agree.
Anti pragmatism is fine for a philosophical or religious position, even politically the ‘¡No pasarán!' ideal can seem very appealing – but there are huge costs to such a position – it’s essentially ‘all or nothing’, with nothing being the most likely outcome. I agree that ‘bending one’s arguments’ is unsound because that demonstrates insincerity but structuring arguments in terms that the other party can understand and accept is a pretty basic requirement if one wants to attain some agreement. And negotiation requires a preparedness to make concessions. Advocating for M.E/CFS a though it were some philosophical truth is not going to achieve anything in the realm of politics, health care or research – these are all arenas of pragmatism and can only be effectively engaged with on a pragmatic basis.
I don't think that my approach is 'all of nothing' - there are all manner of compromises that I would recognise as being preferable to the current situation. But I do think that anything I see as being important progress would be seen as a step in the wrong direction by people like Chalder. I do not think that I could present my views on these matter in a way which would appeal to her, because we're starting from such fundamentally opposed moral positions. When so many of the assumptions about CFS being made by those with power and authority are so flawed and have led to such problems, I do think that we need to challenge those assumptions, rather than try to work within them. I also think that it's the pragmatic approach taken to CFS which has served to cause so many problems - when we do not have a clear understanding of the problem we a re trying to solve, or how to measure our successes, pragmatism becomes virtually useless, and can be used as an excuse for doing whatever it is one wants to do.
We do not know what approach to CFS advocacy will lead to the best results. I think that we can all agree that we should all try to be as intelligent and well informed as is possible (and this is a difficult and complicated topic to be well informed about), but beyond that, I do not think we can say whether cautious sucking up to quacks with authority, or militant raging against the oppression of the NHS, or anything in-between, would lead to a preferable outcome. Often when people have been badly treated and have a legitimate grievance, a degree of militancy is helpful - but the weakness (physical and political) of CFS patients does mean that this approach is less likely to be helpful for us.
I think that 'we' (all patients and groups) should be pushing for an official acknowledgement of the problems caused by those exaggerating the efficacy of cognitive and behavioural treatments for CFS, and for a commitment to preventing such problems occurring in the future. I think that this is an easily defensible position, given the evidence we have available to us, but politically, it is an extreme position, and one which would turn many of those with power and authority against us. I've got no idea if my position is politically feasible... but I'm not sure that anyone else does either. If it is not, and we need to go on accepting that those with power over us should be allowed to mislead us, then I do not see what meangingful advances we can achieve other than trying to get a bit more funding for research and crossing our figures for a medical breakthrough.