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

Andy

Andy

Retired committee member
Two images will haunt me to the grave.

First image: my daughter, Zoe, then 14, sits on the bottom stair. It’s time for bed. Or in an hour it will be. Her face winces with the usual pain and exhaustion, but terror, too, of the ordeal ahead.

One stair at a time, shuffling on her bum, several minutes essential break between each stair, she will now take an hour to haul herself upstairs.

Why would parents torture her like this? Non-specialists have insisted Zoe separate night from day. Total rest will decondition her.

Indeed, the community-physio tells Zoe she should take a walk up and down the garden; only people with hangovers lie on the couch all day.

A terrifying sense that Dr Google knows more about Zoe’s illness than local medics is confirmed when Zoe collapses and needs admission to hospital.
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https://www.meassociation.org.uk/20...aediatric-m-e-by-adam-johnson-06-august-2019/
 
That is a powerful, chilling and important article which deserves wide circulation. Is it too late for that father to be included as a witness to the NICE review? And can the MEA get the Guardian to publish it?

What follows is a diversion. It does have a point, though a peripheral one.

I had just read this article when my daughter, who has moderate/severe ME and is in her thirties came to my room for a brief chat before heading back to bed. We were discussing what audio books we listen to, including whether either or us feel ready to revisit childhood favourites.

She reminded me of two that both of us had loved as kids, but would not want to listen to now. Heidi and The Secret Garden. What do they have in common? A central child character who is too frail to walk after an illness at the start of the story, and is kept from trying by over protective parents or carers. Both escape the influence of those carers and learn to walk again and recover to full health. The message is clear. Overprotective parenting causes chronic illness and disability.

Messages from popular children's stories can have a powerful impact on attitudes that carry into adult life. Is it too far fetched to think that these two stories, and probably others like them, have subconsciously influenced health and social work professionals so they believe the myth of illness caused and perpetuated by overprotective parents?
 
Trish said:
She reminded me of two that both of us had loved as kids, but would not want to listen to now. Heidi and The Secret Garden. What do they have in common? A central child character who is too frail to walk after an illness at the start of the story, and is kept from trying by over protective parents or carers. Both escape the influence of those carers and learn to walk again and recover to full health. The message is clear. Overprotective parenting causes chronic illness and disability.

Messages from popular children's stories can have a powerful impact on attitudes that carry into adult life. Is it too far fetched to think that these two stories, and probably others like them, have subconsciously influenced health and social work professionals so they believe the myth of illness caused and perpetuated by overprotective parents?
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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.
 
Sean said:
Nah. They will just convince their co-conspirators in government to introduce a law making them immune from legal action for consequences their noble heroic compassionate research and clinical work.

Not kidding.
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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.
 
Trish said:
She reminded me of two that both of us had loved as kids, but would not want to listen to now. Heidi and The Secret Garden. What do they have in common? A central child character who is too frail to walk after an illness at the start of the story, and is kept from trying by over protective parents or carers. Both escape the influence of those carers and learn to walk again and recover to full health. The message is clear. Overprotective parenting causes chronic illness and disability.
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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?
 
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