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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

Esther12

Esther12

Senior Member
Messages
13,774
Table 3 has the data for school attendance, and missing data is more of a problem here.

SMC
six months: 37 participants
twelve months: 36 participants

SMC+LP
six months: 41 participants
twelve months: 34

Thje significant difference was only at twelve months, when data was missing for a third of participants in the LP group.

http://adc.bmj.com/highwire/markup/200532/expansion?width=1000&height=500&iframe=true&postprocessors=highwire_figures,highwire_math,highwire_inline_linked_media,highwire_embed
 
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snowathlete

snowathlete

Senior Member
Messages
5,374
Location
UK
Ysabelle-S said:
Talk about hedging your bets. Sharpe allowing them an out-clause by usefully muddying the waters on ME versus CFS. Their favourite fall back position to cover their psychobabble arses.
Click to expand...

I think we will see more of this and I wonder if it is more about the NICE guidelines. What do you do if NICE want to change the guidelines to match the US by dumping CBT and GET for ME because the studies are based on fatigue definitions like Oxford? You split ME and CFS, then you can carry on getting grants for research of fatigue, where you can carry on doing poor methodology research that you can control the outcomes in.
 
Esther12

Esther12

Senior Member
Messages
13,774
They say this on SMC:

The number and timing of the sessions were agreed with the family depending on each adolescent’s needs and goals. Those with significant anxiety or low mood were offered additional CBT. Participants could choose to use physiotherapist-delivered graded exercise therapy, which provides detailed advice about exercise and focuses on an exercise programme rather than other activities.
Click to expand...

I couldn't see any info on how many participants in the different arms made use of CBT or GET. That seems really important. Could anyone else see this information anywhere?
 
Esther12

Esther12

Senior Member
Messages
13,774
Did I read somewhere that their primary outcome was originally school attendace at six months?

I had thought I had but I now can't find a reference for that. If so that would be a null result.

This mentions the change in outcome:

changed our recommendation for the primary outcome for the full study from school attendance to disability (SF-36 physical function subscale) and fatigue (Chalder Fatigue Scale).
Click to expand...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235039/
 
Esther12

Esther12

Senior Member
Messages
13,774
Coverage in NZ's Voxy, with a quote from Phil Parker:

http://www.voxy.co.nz/health/5/293860

Phil Parker said, "My vision has been to help change the current landscape and reverse the fate of those who are told they have run out of medical options. So I would like to thank the researchers of Bristol University Medical School for undertaking this study, the first trial investigating LP’s effectiveness, cost-effectiveness or possible side effects. The number of children suffering from CFS/ME is eye opening, these are the formative years and a condition such as CFS could mean the loss of months and years of education, wellbeing and childhood. The study’s findings indicate that LP offered in addition to specialist medical care is effective and probably cost effective for children and young people who have been diagnosed with mild/moderate CFS/ME - not only important evidence to support the value of this intervention, but also important in creating new opportunities for how young people with CFS could be treated."
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S

Sidereal

Senior Member
Messages
4,856
This is an uncontrolled study. The authors should have compared LP to an intensive three-day sham course which mimics the emotional experience but doesn't involve the 'active' ingredient of LP which I presume are the positive affirmations and shouting stop. It is possible that going on a three-day vacation has the same effect as the LP.
 
Esther12

Esther12

Senior Member
Messages
13,774
Sidereal said:
This is an uncontrolled study. The authors should have compared LP to an intensive three-day sham course which mimics the emotional experience but doesn't involve the 'active' ingredient of LP which I presume are the positive affirmations and shouting stop. It is possible that going on a three-day vacation has the same effect as the LP.
Click to expand...

Or, it's possible that those in the LP arm were less likely to receiving CBT/GET, so got all the positive narrative/response bias stuff, but avoided a lot of the worst stuff from CBT/GET?

Like how Tuller pointed out that FITNET could have been better than the control as the control often involved face to face CBT/GET.

I've not been able to find out what was going on with CBT/GET provision in the different arms.
 
Orla

Orla

Senior Member
Messages
708
Location
Ireland
*NEW COMMENT* Prof Alastair Sutcliffe, Professor of General Paediatrics, UCL, said:

“A recent systematic review of neurolinguistic programming (NLP) stated “There is little evidence that NLP interventions improve health-related outcomes. This conclusion reflects the limited quantity and quality of NLP research, rather than robust evidence of no effect. There is currently insufficient evidence to support the allocation of NHS resources to NLP activities outside of research purposes.” [Br J Gen Pract. 2012 Nov; 62(604): e757–e764. Published online 2012 Oct 29. doi: 10.3399/bjgp12X658287, PMCID: PMC3481516]. But now we have this interesting study by Crawley, a well-conducted single blind clinical trial that suggests NLP, in combination with other therapies and described as the ‘Lightning Process’, is effective for some children with the very hard to treat condition of chronic fatigue syndrome (CFS).

How was it blinded? Surely both participants and therapists were aware of what they were doing?
 
Orla

Orla

Senior Member
Messages
708
Location
Ireland
charles shepherd said:
Science Media Centre Roundup

EMBARGOED UNTIL 11:30pm UK TIME on WEDNESDAY 20th SEPTEMBER 2017

Version 2: Expert reaction to controversial treatment for CFS/ME as published in Journal of Archives of Disease in Childhood*

Prof Dorothy Bishop, Professor of Developmental Neuropsychology, University of Oxford, said:

“The gains for patients in this study do seem solid, however, I am still rather uneasy because while the patient allocation and statistical analysis of the trial appear to be done to a high standard, the intervention that was assessed is commercial and associated with a number of warning signs. The Lightning Process appears based on neurolinguistic programming, which, despite its scientific-sounding name, has long been recognised as pseudoscience.

“I am sympathetic to the authors' decision to evaluate the Lightning Process (LP), given that they had patients who had used it and reported favourably on it, and it could be argued that to fail to do so would indicate a degree of closed-mindedness. But the commercial nature of LP really creates problems. We cannot tell which aspect of LP is responsible for the gains in patients who took part.

“I noticed, for instance, that LP involves group sessions, whereas the comparison group undergoing standard medical care were treated individually. So it may be that the benefits derive from interacting with other children with chronic fatigue syndrome/ME, rather than the specific exercises and training. This is, of course, something that could be investigated in future research but meanwhile the concern is that this report will in effect act as positive publicity for a programme that is being proposed for a wide range of physical conditions (including chronic pain, low self-esteem, multiple sclerosis, and depression, to name just a few) and has to date been promoted largely through celebrity endorsements.”
Click to expand...

This is the best comment from the SMC press release, but still contradictory. Good that she points out that LP is NLP and that that is pseudoscience but then she goes on to justify its use in children? (and a nice little bash at anyone who was opposed to the study, even though she obviously knows this would be with good reason)
 
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