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 The new guidelines rescinded the agency’s prior recommendations for GET and CBT as curative treatments and proposed management strategies instead.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 some kids with long Covid are currently engaged in distressing struggles with authorities over such issues as denial of appropriate treatment and/or possible removal of the children from parental care. The families, understandably, are terrified. Dr Binita Kane, a physician in the Manchester area, has become a champion of families facing these challenges. (I recently interviewed Dr Kane.) Yesterday, she posted a heart-felt thread on Twitter about the situation. I have posted it in full below
**********
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/
I’m appalled by what I’m reading. Enough of it – those who lead and direct this medical insanity must be brought to book.
My doctor recently had a 6 week battle with covid.She has now changed her mind that my ME/CFS is psychological.
After experiencing covid herself,(she said that it was like carrying around a 100 lb rock) she now believes that I have a physical illness. So maybe a lot more medical professionals will have to get long covid before doctors will buy into the overwhelming evidence that long covid and ME/CFS are “real.” It is a shame and a scandal that it has come to this.
What is more likely, that all these people with similar stories and symptoms are physically ill, or have coincidentally all suddenly (and probably after a viral illness) become anxious/attention-seeking/manipulated? It defies logic.
This is a combination of arrogance and ignorance by professionals, people in positions of trust.
First do no harm! Please.
I have the same problem in Scotland for my granddaughter re court orders shocking when kids are sick!!!
If they do get there way may need to go public !!!
I would really like to know how many kids this is happening too
Totally traumatise the kids it’s not on !
Very disturbing, very disturbing.
I’d be interested to know what the precise arguments are for removal of the children from their parents, and what ‘factitious disorder and FND ‘ actually means. Many doctors, FND experts even, don’t seem able to get what FND means right, and factitious disorder is supposed to be pretty rare, isn’t it (?), so what’s this combo all about? Have these children been diagnosed with FND via positive signs? If so, which positive signs, and what are the sensitivity and specificity values for those particular signs? How were they arrived at? If there are no positive signs then it’s not FND. Then it’s a case of – on what basis is a factitious disorder label being given? Can that be proven? What advice are the doctors following? It may be seriously flawed.
Oh, and if doctors are quoting FND misdiagnosis rates to courts to make out that they can’t possibly be wrong, that their diagnoses are solid, then there needs to be awareness of the issues that surround them.
Let’s face it, legal peeps have been told that FND is common, that it’s the second most common presentation in neurology/ to neurology outpatients, e.g. see here -https://www.stewartslaw.com/news/stewarts-expert-witness-training-webinar-2021/ and here -https://www.stewartslaw.com/wp-content/uploads/2021/06/Dr-Parashar-Ramanuj-Decoding-FND_SN.pdf . But, by the sounds of David’s last blog, that claim has now been discredited. I’d imagine that it’s a pretty serious matter if legal representatives and courts have been or are being influenced by faulty information.
Just saying.
Interesting comment CT. I wonder if that particular law firm has been advised that what they claim on their own pages is no longer accurate? And that the authors, as per Tuller’s recent blog, have agreed?
What is wrong with these people! Dr Kane is right saying that ego, self- interest and arrogance are at the heart of the problem. They seem to lack any empathy towards their patients and their families. Is it more important to them that their opinion has to be the correct one all the time?
My daughter is 45 and says that she is tired of paying drs for her to educate them about something they should know more about. We are making progress but way too slowly and “not listening” and “not wanting to know” and not saying
“Here is something just do not know.” are old, self inflicted problems, and self solvable problems.
same thing happening more and more (link to study on thread) https://www.s4me.info/threads/refuel-ms-cbt-get-digital-intervention-ms-fatigue.34143/