By David Tuller, DrPH
For decades in the UK, parents of children with what was formerly called chronic fatigue syndrome have run the risk of being accused of making or keeping their kids sick and/or not pursuing proper treatment strategies. These cases have been based on the discredited belief that graded exercise therapy (GET) and cognitive behavior therapy (CBT) were the treatments-of-choice. The PACE trial, which published its first results in The Lancet in 2011, purported to have proven that these treatments were effective.
That study, as we all now know, was a piece of crap. The investigators engaged in methodological shenanigans that, at best, constituted research misconduct and, at worst, constituted something worse. The most disturbing and bizarre feature of the trial was the fact that a significant minority of participants had already met a key outcome threshold at baseline. Participants could be deemed “recovered” in the PACE trial even if they reported reduced physical function and greater fatigue than at the start of the trial. The authors failed to disclose this paradoxical quirk of the trial, presumably because they recognized that it was absurd.
That adherence to the PACE prescriptions should have ended when Britain’s National Institute for Health and Care Excellence (NICE) published revised ME/CFS guidelines in October, 2021. The new guidelines rescinded the agency’s prior recommendations for GET and CBT as curative treatments and proposed management strategies instead. NICE guidelines technically are designed for use in England and Wales, but they are highly influential in the rest of the UK and around the world as well. Given NICE’s prominence and authority, this updated approach should now be considered the standard-of-care.
Many patients with long Covid experience a similar range of non-specific symptoms—profound exhaustion, post-exertional malaise (a pattern of severe relapses after minimal activity), cognitive deficits, etc—and have received ME, CFS, or ME/CFS diagnoses. But that hasn’t stopped clinicians in some areas from holding families hostage to their intransigent and misguided beliefs about these severe manifestations of long Covid.
In England, the families of two kids with long Covid are currently struggling to prevent authorities from removing their children from their care. The families, understandably, are terrified. Dr Binita Kane, a physician in the Manchester area who has become a champion of families facing these challenges, has been involved in both these cases. (I recently interviewed Dr Kane.) Yesterday, she posted a heart-felt thread on Twitter about the situation. I have posted it in full below
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Dr Binita Kane is “utterly horrified”
Here is Dr Kane’s twitter thread:
Of all the things I thought I would do in my career, I didn’t think it would be getting involved with cases of children being denied life-saving treatment, or very sick children being removed by court order from their parents due to ‘factitious illness and FND’ 1/
I’m utterly horrified at what is happening to some children with #longcovid. History repeating itself – this has happened for decades to kids with #MECFS. These kids desperately need care and treatment. When will the medical profession wake up? 2/
How many more children and young people need to die before action is taken? It’s one of the biggest scandals in medical history and no one talks about it within medicine. It’s devastating to walk with the families going through this 3/
There is a power system in place to disadvantage people with conditions like ME & Long Covid.I was part of the establishment that taught me to think in a certain way (therefore was part of the problem through no fault of my own). It took lived experience for me to ‘wake’ to it.
The only way to change things is from within the power structure. But it’s hard when up against institutional machinery that stops the ‘right thing’ from happening at every turn. Most families can’t advocate for themselves and need people like me to speak out 5/
How do we change it?
It will take collective effort, but it’s possible and I hope the tide is slowly changing.
It needs to be a movement, many voices asking for change. We need a call to action. We need to lobby. We need our leaders to care 6/
We need to find compassion and bravery from within the health service to help these children. To put ego, self-interest and arrogance aside and really listen to patients. To think ‘is it possible that we’re wrong?’, ‘is there a different way’? 7/
For now we keep fighting, I just hope it’s not too late for the young people involved.Thank you to @LongCovidKids for the opportunity to help these families, it’s the hardest part of my advocacy role.END/