I can relate to you professional experience as I too worked/work in a similar setting- once a Pupil Referral unit and for years as a complex Case tutor for Education Other than at School". In November I wrote of "sheep and
goats'
ruralres1 says:
November 12, 2016 at 12:56 pm
In the Radio Bristol Broadcast and on the various bulletins on Radio 4 The Today Programme announcing the FITNET trial, Esther Crawly stated that many young people who present at clinic have ‘low cortisol” in the morning. Perhaps Dr Hammond could offer information about how this is determined please? What tests are done? Dr Hammond stated, “I believe that it is likely to encompass a number of different diseases with different biological, environmental and genetic causations.” This is wholeheartedly agree with.
My son was part of the 1990’s RCPCH.Fatigue Study- now it appears re-branded ‘Children of the Nineties’ study.
I still have the original copy of my return. It was study where GP practices were asked about any child with “unusual fatigue” and it was completed often by a practice nurse. The child was not involved , nor interviewed nor had to give consent if I remember.
Also in the 1990’s, I was chastened (and worse, suggested “FII” fabrication or induction of illness in a child’) by local community paediatrics for asking for this possible ” low cortisol” and other hormone disruption to be investigated, even though I was aware that significant research on “low” cortisol had been done on adults throughout the 1990’s. In 2000, went to the “London Fatigue 2000 Conference” and actually questioned Simon Wessley and Anthony Cleare about this. In parallel, I was struggling to help a son with a diagnosis of ME. I was ignored then and subsequently by statutory services. My experience was the norm not the exception sadly.
At the time, from 1999, I worked as specialist educationalist in a Pupil Referral Unit for children out of school for medical needs. All our pupils had fatigue, often brought about by multiple complex reasons, including, misdiagnoses and inappropriate medication treatments (GPs or CAMHS prescribed) and /or their personal difficulties. These included long term chronic illnesses, diagnosed ME, serious allergies, Crohns, celiac, family violence, trauma, abuse, autism, Tourettes Syndrome, eating disorders, mental ill health and just being a teenager! – you name it and we had it!
Seeing these diverse needs in kids all day every day, I became a bit of a ‘medical “expert…….. it was not hard to separate “sheep from goats” unlike the above ‘Children of the Nineties’ study or it appears the FITNET trial.
The study by Esther Crawly in a sledgehammer to crack a nut. Whilst I agree, is necessary, nay essential to provide support for children with complex needs and to liaise with education services and others, (this should be being done anyway by law and the Children’s Act), my fear is this study and the inflated claims made as to “success” will fuel the problems and culture of disbelief in others and statutory services like Social Care & Education about “true “ME and CFS,. It will exacerbate rather than resolve it.
The BBC headline, 1st November 2016 “A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialed for NHS use.” is both misleading and potential harmful if proven to be less than the truth of ME.
As to, “The disease affects one in 50 children, leading to mental health problems and missing school. The devil will be in the detail. “Esther Crawly et al, in my humble opinion, must be held to account and show due diligence by separating the “sheep from the goats” before any further work in this field of ME is agreed to. More importantly, she should attempt to make a more robust and proper, unequivocal diagnosis of ME, rather than conflate the issue with her “diverse” group of very needy young people (most of whom are what I call “walking wounded- not severely affected)” who appear to be used as a vehicle to further and build her own career and reputation. Harsh as that may seem, and no matter how well meaning her true intentions to help are, she should really walk the walk before talking the talk.
Goats"!
