Comment from Angela Kennedy on proposal for Parliamentary Debate
At present I cannot think of one MP with enough grasp of the situation for ME/CFS sufferers (the damaging effects of the psychiatric paradigm, its flawed evidence and irrationality as a belief system, the systematic attack on patients as deviant not ill, the biomedical evidence demonstrating physiological abnormality and now ongoing infections being ignored just for starters) to mount a cogent response in parliament in a debate.
The Gibson Report was privy to huge amounts of high quality evidence – and even they got things spectacularly wrong, to the point where Chalder’s notions of mind over matter is now being touted as ‘biomedical research’, advocates were constructed as unreasonable and hostile, the children’s section was positively dangerous (and this list of damage is not exhaustive!)
The problem is that ME/CFS, and the new emerging stuff like borreliosis and other infections being found, is a very complex subject, both scientifically and politically. We have already seen that the charities are incapable of addressing these complexities in any meaningful way. How can we expect MPs to do so? (I don’t mean that morally- I mean literally!) Especially if, for a very recent example, they are NOT being briefed as to the strength of opposition to the ‘clinics’, because people are being prevented from speaking this opposition, or discredited if they succeed, by charity reps among others.
I’m not saying people should stop political or parliamentary campaigning. Not at all. For example, the submissions to the Health Commission on NICE were spot on, and gave suitable exposition to a complex subject (though I can’t help but worry how the committee itself will deal with such information. Are they capable of grasping, let alone committed to rectifying, the situation?) I do think politicians are NOT able to deal with complex subjects very well – but this does not necessarily mean that we shouldn’t trouble them with complex subjects! However, it does mean we should always proceed with care, and we should be exploring alternative strategies such as litigation also.
But the last attempt at an EDM was full of dangers for people, especially when certain charities attempted to take control of the process, with their limited understanding of the issues and refusal to consult. At this stage a parliamentary debate could well go the way of Gibson, down the path of confusion and rubber stamping of the psychiatric paradigm in all its guises.
I think there are certain questions we should be asking ourselves (and no doubt people are): what are the possible benefits and what are the risks of either option? Having done this for myself – I would conclude that at this stage both options have risks which far outweigh any potential benefits.
20 July 2007