ME Association guest blog: "My daughter and the pervasive dangers of PACE in paediatric M.E." by Adam Johnson

https://www.meassociation.org.uk/20...aediatric-m-e-by-adam-johnson-06-august-2019/

 

I often think of The Secret Garden in that context now. The logical part of my brain would hope people could separate outdated and misplaced ideas of disease and recovery but unfortunately what you say @Trish probably has some truth to it. It must have been a much more terrifying world as a parent when death rates were so much higher and causes of disease unknown. It's also a common theme with regards to treatment of women in Victorian/Edwardian novels of 'protecting' them from the world.

 

The lawsuits are going to be so huge.

The judicial review of the 2007 NICE guidelines was rejected with sneers of mockery. It failed to prevent harm at the time but the combination of horror stories like this, and thousands more voiced and unvoiced, and the very specific warnings that exactly this would follow this pseudoscience will make as compelling a case as anything can be.

It's important to have those testimonies in public. Keep at 'em. Almost ironic that psychosocial proponents talk (well, bullshit is more like it) about the silent majority who support their effort when in fact this here is the silent majority, voiceless, abused and discriminated, furthermore by the constant stream of attacks and vilification by the likes of Sharpe and Wessely. Who knew treating sick people with contempt would be bad? What a surprise.

 

Or nothing will be contemplated till they are dead - viz Jimmy Savill

 

That will depend very much on prevailing public opinion at the time, and what they think they could get away with ... or not.

 

Most countries explicitly forbid retroactive laws precisely because it's a giant loophole. Not sure about the UK, though, since it doesn't have a formal constitution. But it would create such a bad precedent that it be would unlikely to pass.

And although people can be declared immune of fault, it would not remove liabilities to the victims. It's entirely possible there will be no worse consequences for them than losing their medical licenses, but the harm is undeniable and cannot be simply waived off this way, compensation and reform would still be necessary.

 

It’s very hard to get accountability and compensation from Government policy & strategy. Really tough to see the ongoing struggle in the defined & fairly clear cut case of ppl, especially men with haemophilia, who contracted HIV/AIDs through blood transfusions from ‘cheap’ imported blood.

 

A more modern but counter example is the film industry's disturbing portrayals of 'Fabricated or Induced Illness' in a child. One film I can think of is 'The Sixth Sense'. I'm not a parent of a child with M.E., so I have no idea if this sort of media promotion is making things worse for them, but I can imagine it doing so. How can a parent win in this situation until M.E. is understood for the devastating disease it is?

 

Similar to how wheelchairs are portrayed by Hollywood. If you get up and walk from a wheelchair you are more likely to be the villain