Authors: Esther M Crawley, Alan M Emond, Jonathan A C Sterne
A diagnosis of CFS/ME was given using diagnostic criteria recommended in
NICE guidelines to children who had disabling fatigue lasting 3 months or longer with one additional symptom, where no other cause for the fatigue could be established.
The basic criteria are on Page 7 here:
http://www.nice.org.uk/nicemedia/live/11824/36190/36190.pdf
In short:
- Fatigue that is new or specific onset
and persistent and/or recurrent
and unexplained by other conditions
and resulted in substantial reduction in activity characterised by PEM and/or delayed fatigue.
- Plus
One symptom from a long list including headaches, sleep disturbance, sore throat, and "physical or mental exertion makes symptoms worse".
Given that PEM effectively appears in the list of which you have to have one of the symptoms, so that everyone who fits the fatigue criteria can count the PEM as one of the additional symptoms, the criteria as a whole appear to boil down simply to this:
"Chronic fatigue with a specific onset, with PEM, and no other medical explanation."
So they are accurate when they call it "Chronic Fatigue" but certainly not when they call it either CFS (which had, and has, different and stricter definitions) and certainly not when they call is "CFS/ME", since ME has always had a stricter definition still.
And this point about definitions is of course 100% transparently obvious to anyone with the most basic knowledge of the definitions and history of ME and CFS, and there can be no excuse whatsoever for the use of this definition as another layer in the ongoing game of Russian Dolls.
Children with CFS/ME were offered specialist medical care, following NICE guidance, by the CFS/ME specialist service. All children who accessed the specialist service received advice and help with sleep and activity management. Some children received cognitivebehavioural therapy, while others received graded exercise therapy.
Nice.
Of the 23 children diagnosed as having CFS/ME, four were given advice about managing CFS/ME but did not attend follow-up appointments or return follow-up inventories. Of the remaining 19 children, 12 (63.2%) were attending full-time school by 6 months, of whom six had made a full recovery and were attending full-time school with minimal advice after 6 weeks. One housebound child improved and was attending school part time every day by 3 months. For the remaining six children, school attendance did not alter significantly at 6 months.
So: What we have here, after unpicking the details that obscure what's really going on, is:
A 1% rate of Unexplained Chronic Fatigue which they are calling "CFS/ME" using the NICE criteria.
Of the 23 children that made up that 1%:
- 4 got some initial advice and never came back
- 6 saw no improvement at all
- 6 made a full recovery with minimal advice after 6 weeks
- 6 recovered enough to attend full-time school by 6 months
- 1 improved from housebound to part-time school attendance by 3 months
So given that previous estimates of the prevalence of ME vary between about 0.15% and 0.5% depending on the criteria used, and given that these criteria represent the world's loosest criteria for ME requiring few of the cardinal symptoms, it seems clear that just over half of that 1% (the half that recovered quickly) didn't have ME/CFS in the first place, and the other half gained no improvement from the treatments offered, and 40% of them didn't attend for follow-up appointments.
Conclusions: More than half of those diagnosed under the NICE criteria don't really have ME/CFS, the other half (0.25-0.5% of the population, as per previous prevalence estimates) aren't helped at all by the NICE recommended treatments, with 40% of them so disgusted by what's on offer that they don't return.
So: nothing we don't already know...just more smoke and mirrors...