My daughter and the pervasive dangers of PACE in paediatric M.E. by Adam Johnson | 06 August 2019

August 6, 2019

Guest blog by Adam Johnson.

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.

That was November 2013. Zoe went down with a horrible virus in early September. Mandy my wife, watched Zoe’s swift decline from active, witty, high-achieving teen, to couch-bound, grey-faced invalid, unable to eat or keep much down. 

Mandy was treated as stock neurotic mother. Zoe would soon be up and about. Only on Zoe’s second trip to the Paediatric Assessment Unit, did the hospital notice she was walking like a 90-year old.

They admitted her on the spot with frowns that implied we hadn’t been taking her condition seriously enough.

The consultant (infectious diseases) decided Zoe was depressed and had an eating disorder.  True, she’d lost a lot of weight from vomiting and inability to eat. But that wouldn’t explain the stairs or the many other symptoms. No one listened. The machine seemed intent on doing what it always did.

Eventual Diagnosis

Zoe was put under surveillance – monitors, lights on constantly, nurses watching her eat and humiliatingly insisting on escorting her to the loo. Mandy, meanwhile, was climbing the walls. For all her fear and doubt, she knew they were wrong. 

Reassuringly – but confusingly too – Zoe was swiftly confirmed by the Eating Disorders Nurse and a Psychiatric Nurse not to have anorexia or be depressed.

After an age, a Consultant Psychiatrist diagnosed CFS/ME and helped us get Zoe out of there.

As anyone with Severe CFS/ME will tell you, there are few worse environments than hospital, even without the Big Brother impersonations. 

Armed with a potential diagnosis, we finally got a specialist in April 2014. Severe CFS/ME was confirmed. Terrifying as this was, at least we thought now Zoe was on the path to appropriate care…

Threat of Child Protection

Second image: Mandy runs weeping from a soul-less meeting room. 

It’s November 2015. Zoe’s been hospitalised a couple more times (mainly because they won’t help us care for her at home). She’s been tube-fed.

The consultant (a different ME-denier and WHO-and-NICE-ignorer) is determined to understand Zoe’s ‘fatigue’ (M.E. diagnosed by an M.E. specialist isn’t adequate).

Clinicians (non-specialist) regularly tell us Zoe’s too ill for M.E. (or should that be yuppie flu?). The Clinical Commissioning Group won’t provide nursing at home, but Zoe’s had a stint in a much more expensive nursing home (in retrospect clearly to ensure 24-hour spying on her and Mandy). 

Evidence-based medicine in paediatric CFS/ME? The CCG fantasises that Zoe should have recovered in six months; failing to do so confirms parental blocking behaviours. 

We managed to get Zoe out, since the specialist agrees she’s best cared for at home. Zoe, though, refuses hour-long sessions of CBT on the – to us – reasonable grounds that the first one nearly killed her.  (The tertiary centre specified any such intervention should be for a few minutes max)

The CCG, though, heroically refuses to collude with family and specialists in treating this condition as real. So now Mandy, exhausted from caring 24/7 and threatened with child protection, runs from the room weeping.

The social worker helped Zoe record an MP3. When Mandy returns, conference hears Zoe’s wiped-out but articulate explanation of spoon theory. Social care representatives are accordingly convinced that a) she’s rational and b) she and the specialists should be listened to.  

The NHS safeguarding staff are furious that the Local Authority won’t acknowledge their amazing insights about potential parental pathology and have resolved instead that no child protection order is needed. We were safe. For a while, at least…

The PACE Trial

There are skilled medics and researchers who can debunk the PACE trial (and have repeatedly done so) while PACE supporters refuse to openly engage or to listen.

Instead they brand people like me as crazies. Such utter refusal to listen to the patients’ (and carers’) experience is the very worst medical practice.

But even if PACE had been entirely valid, it only ever claimed to show a slight benefit to a few mild to moderate patients (probably including some people who never had M.E. in the first place). 

It certainly didn't study any who were severely affected and yet its' recommendations are being used to direct CBT and GET and the theory of doing more and pushing through towards those for whom it is woefully unsuitable. Further, this practice is not endorsed by the recommendations for people severely affected that are made in the NICE clinical guideline.

The question I have for the NHS (and indeed any social care departments who collude in blaming families for this illness) is this: how could such a flimsy evidence-base ever justify torturing a very sick 16-year-old like Zoe with the threat of being taken from her parents, just because she didn’t want to endure (and that is the exact word) GET and CBT? And when will they address the urgent need for medical schools to start teaching good science? 

The pursuit of the family began again almost immediately and could be the subject of a future blog. Secret meetings and s17 referrals carried on. They didn’t give up and we were forced to move to a new Local Authority which then started their own process and gave us no help (they had to acknowledge following LGO involvement that they had failed to provide us with the support we needed). She then became 18 whereupon, the NHS forgets and ignores us apart from a friendly practice nurse. Zoe is now 20.

Note: The names above have been changed to protect identities.

Image credits: 123RF/Katarzyna Białasiewicz

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