Discussion in 'General ME/CFS News' started by wdb, Dec 12, 2011.
Doesn't say what criteria they used.
I hope they don't force all these children into graded exercise.
Hi, as I said on another post today, there is a large percentage of misdiagnosis here in all probability. Many of these children will have post viral fatigue syndrome, and recover (usually) in some months to a year. Whatever treatment they were on in this time will then be touted as the cure by some, whether or not it helped. I very much doubt any of these children were diagnosed by ME criteria - maybe a few, but unlikely to be more. As a result it should say:
"One in a hundred children have something wrong with them that includes fatigue as a symptom. Some of these might qualify for a CFS diagnosis, and some might qualify for a ME diagnosis."
On the plus side the side bar on the article does mention that CFS/ME might actually be several illnesses not one.
This is the study http://bmjopen.bmj.com/content/1/2/e000252.full?sid=45dfb6e7-c239-41f3-80ee-76210159ec6f
and the so called criteria for diagnosing CFS/ME
Authors: Esther M Crawley, Alan M Emond, Jonathan A C Sterne
The basic criteria are on Page 7 here:
- 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.
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...
Adding to Alex's closing comment...
On the positive side, this is a mainstream UK media outlet saying "The cause of chronic fatigue syndrome is unknown and there is no known cure", and also also that it's a serious condition.
The article admittedly tails off into quotes from one of Wessely's associates, and inferences that CBT & graded exercise help, but doesn't resort to full-strength Wessely-isms.
I came across this just now in the full NICE guidelines:
"The Royal College of Paediatrics and Child Health in their Evidence based Guideline for the Management of CFS/ME defined CFS/ME in children as ...generalized fatigue (fatigue causing disruption of daily life) persisting after routine tests and investigations have failed to identify an obvious underlying cause."
Wow! I didn't think it was possible to water the definition down anymore than Oxford or NICE, but here you go. No requirements of any additional symptoms, no PEM required, and the fatigue doesn't even have to be chronic. So ME = straight up idiopathic fatigue (not even ICF!)!
The Guardian picked this up also.
Esther Crawley seems to be pumping out papers that attempt to justify funding her clinics at the moment, possibly in response to the poor results from PACE.
I've not read this new one properly, but following on from her dishonest claim that PACE showed a 30-40% recovery rate, I'm not expecting her to have produced anything terribly worthwhile.
Quote from study!
'There is some evidence that particular treatments (graded exercise therapy and cognitivebehavioural therapy) are moderately effective in children,811 while the recently reported PACE trial provided strong evidence that these treatments are moderately effective in adults.'
Strong evidence?? Moderately effective??
Just heard Dr Crawley talking about it on Radio 5, apparently '94% of kids get better if it's caught early enough'..she's also 'doing research into the effect on families'...oh please. All that money she gets for 'research' and what a complete waste of money. Interesting when one of the kids with ME was asked what the treatment was she basically said pacing. So that's all they offer then, brilliant, think I'll book my daughter an appointment with her.
'Moderately effective' is probably meaningless enough to be accurate - the claims of 'recovery' in the last paper were utter bullshit.
I bet the 'get better' was used by Crawley to describe something rather different to what most radio 5 listeners will take it to have meant.
Yuppie Flu again !!!
I have just been reading these articles with interest when my brother phoned me to tell me he had heard a report on the radio on his way into work this morning.
I imagine this must have been on the BBC's R4 Today programme as my brother told me that John Humphrys introduced the item and glibly referred to the illness as 'Yuppie Flu' and discussed it with some ignorance. I am surprised at this because I always respected John Humphrys as a serious reporter.
In fact my brother said the woman who he interviewed about the illness was much more supportive of ME patients, and described it as being a serious Viral based illness. I'm not sure if it was Dr Crawley or not - maybe someone else who heard the report could comment.
I am or course mentioning this as here-say, but when I have the energy I will try and find and listen to the item on iPlayer (probably available in the UK only!) - it's a 3 hour programme.
Oh how cynical of you Esther! LOL. I have to agree though, in what other field of medicine do all sentences have to be personally scrutinized before we can even trust them despite already passing professional "peer review"? I'm afraid that if I spend too much time reading CFS literature I will get like the South Park episode where one of the boys gets medically diagnosed with being a "Cynical Asshole" and starts literally seeing pieces of turd flying out of the doctor's mouth when speaking to him! (http://www.youtube.com/watch?v=yRSYhLn4RCI)
The only explanation I can think of for the sudden inflation of "recovery" figures to 40% is that 41% of both the CBT and GET groups reported a "positive change" on the modified Clinical Global Impression scale ie "much better or very much better". However, by this same logic, SMC had a 25% "recovery rate" and APT had a 31% "recovery rate", something Crawley doesn't mention. Omitting this fact and wording it as if all 40% "recovered" because of CBT/GET is pure spin. And possibly fraudulent?
It was disgusting how patients who pointed out problems with the PACE Trial were branded as ideological extremists by the medical profession. By doing so, the Lancet and BMJ enshrined in print, for all future generations to see, the classic strawman and red herring directed towards us while letting obvious flaws sail through unchallenged. It was a disgraceful occurrence in the history of medical science when a misaligned patient community did a better job at peer review than the scientific community. We are supposed to be the unscientific extremists, while it is OK for "trusted" medical establishment figures like Crawley to make dubious claims in medical journals, claims which anyone with the internet can verify as spin, apparently a skill beyond the peer reviewers of Crawley's paper.
You know the stereotype of men acting stupid around attractive women? ME/CFS isn't even a hot topic and it seems to attract similar levels of stupidity and dumbing down of people's usual intelligence. It is one of those subjects that can produce unexpected amounts of n00b and assfacts from otherwise reasonable people.
I thought the same. I was really shocked by how little interest there was in the way the data from PACE was misrepresented. It's fundamentally changed the way I view a lot of things. I'm amazed at how few people seem to really care about the truth.
Listening to her interview this morning on BBC Radio 4 - errr - she sounds totally unaware of the current (? any) findings in the biomedical fields involved. I noticed the interviewer was still suggesting yuppie flu ! And he was sitting next to Sarah Montague who recently frightened us all with stories of threats from people like me unable to make the bathroom.
As the song goes "when will they ever learn" And we have to wait for this lot to catch up - absolutely not the real scientists well on the way now to trump all with the cause in order to aid best.
They're not Treating ME/CFS as defined by any credible definition ICC or CCC. I bet that a lot of what they're treating is depression.
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