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

Messages
13,774
Quote from Crawley in the Telegraph:

"This is a study that shows that with this additional treatment, children are walking further, are climbing more stairs, they are less fatigued, less anxious, they are less depressed. It looks like they have less pain.”

Did they measure walking in any objective manner? I didn't think so.
 

charles shepherd

Senior Member
Messages
2,239
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*


*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).

“Although in my view the effects described show some benefit and are therefore to be welcomed, this could be due to placebo which would still be GOOD news. Costs are modest and therefore this study is to be welcomed.

“These press releases are accurate, however, there is no reference to the fact that the effect may be due to placebo as this is a single-blind trial. But in a sense this is not so important as the trial shows convincing evidence of benefit and as placebo is impossible to quantify we are left with the alternative possibility that these children benefited from the package of care per se, rather than the nebulous placebo effect.

“CFS is a difficult to treat and common disorder, so overall I welcome this step in the direction of evidence-based care as, at present in the UK, there is little agreement about what is the best way to treat this illness.”


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.”


Dr James Thompson, Honorary Senior Lecturer in Psychology, UCL, said:

“The treatment in this study looks like it had an effect, at least by the standard of most clinical trials. To be extra robust I would have liked to see more objective measures, but unfortunately chronic fatigue syndrome is not an objective diagnosis, it is a leftover category and fatigue is subjective.

“One limitation is that self-report scales can be subject to placebo effects, however if the patients feel better in the experimental condition in which they receive extra help, even if everyone knows it, then that is something and the pupils miss less school, which is an objective measure. In this case it may not have been the CBT element of the treatment, but it looks like it.”


Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, said:

“Chronic fatigue syndrome (CFS) is a name for an illness with symptoms of long lasting and disabling fatigue. It affects many young people and can interfere with their education. Whilst some people call it myalgic encephalomyelitis (ME) it is not clear if this is the same or a different condition.

“This trial tests the effectiveness of a commercially available brief intensive talking therapy for CFS called the Lightning Process. The treatment has similarities to cognitive behaviour therapy (CBT) and is given in groups. The treatment was found to be better than usual care in fatigue, physical function and school attendance, with benefit seen as long as a year later. It was also safe. The study does not tell us how it works however.

“This is a robust study because patient were allocated to one of the two treatments at random ensuring that any difference seen in outcome between these treatments, is not due to pre-existing differences in the patients. The main limitation is that, as it is not possible to hide which treatment they received from the patients, their self-ratings of fatigue and functioning could potentially be biased by their views on the treatment they received. However, differences in the school attendance a year later were also noted; it seems likely that these could be due to such a bias.

“Commercially available treatments like this one that are being used by patients should be rigorously tested. This is especially important for an illness like this one about which much misinformation is spread using social media. We need more studies and less polemic.”


* ‘Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial’ by Crawley et al. will be published in Journal of Archives of Disease in Childhood at 23:30 UK time on Wednesday 20th September, which is also when the embargo will lift.


Declared interests

Prof Sutcliffe: None received

Prof Bishop:“Member of the SMC Advisory Board”

Dr Thompson: “None”

Prof Sharpe: “Principal investigator of the PACE trial”
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia

As M Sharpe said:
"The main limitation is that, as it is not possible to hide which treatment they received from the patients, their self-ratings of fatigue and functioning could potentially be biased by their views on the treatment they received. However, differences in the school attendance a year later were also noted; it seems likely that these could be due to such a bias."

Funny how he doesn't apply that thinking to his own trials.
 

Londinium

Senior Member
Messages
178
Jeez the Guardian article is bad. Gets the retaliation in first that anybody questioning this dubious nonsense is some psychopath unable to accept they’re mentally ill. By the time you get to the MEA quote the readers’ views will have already been loaded.
 

Sean

Senior Member
Messages
7,378
Though The Guardian article does include the obligatory nod to balance from the MEA, it is still appalling, and just regurgitates the standard SMC spin without question. Including the usual 'it's only a minority of nasty activists who deny any psychological component....'

"Its use in CFS has been controversial among those highly vocal activists who resist any attempt to suggest the disease is psychological rather than physical."

"But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better."
 
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Ysabelle-S

Highly Vexatious
Messages
524
“Chronic fatigue syndrome (CFS) is a name for an illness with symptoms of long lasting and disabling fatigue. It affects many young people and can interfere with their education. Whilst some people call it myalgic encephalomyelitis (ME) it is not clear if this is the same or a different condition.

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.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
"To be extra robust I would have liked to see more objective measures, but unfortunately chronic fatigue syndrome is not an objective diagnosis, it is a leftover category and fatigue is subjective."
Its getting really old, like 77 years old. There ARE objective tests that show pathophysiology, from 1940 on. How out of date are these "experts"?

(Quote from Dr James Thompson, Honorary Senior Lecturer in Psychology, UCL)
 

Ysabelle-S

Highly Vexatious
Messages
524
Jeez the Guardian article is bad. Gets the retaliation in first that anybody questioning this dubious nonsense is some psychopath unable to accept they’re mentally ill. By the time you get to the MEA quote the readers’ views will have already been loaded.

The Guardian has a long history of abusing ME sufferers, so I wouldn't waste my time reading anything from them. If they've left comments open I hope people take the opportunity to point out the facts, but they don't always leave articles on ME open. Their ties to the SMC mean they are a complete washout and totally unable to deal with this subject objectively.
 

charles shepherd

Senior Member
Messages
2,239
True, but people tend to remember the last paragraph, which in this case is the MEA's comments.

We have tried to contact all the main health journalists (press, radio and TV) today with a press briefing (extract below) and offers to speak to journalists

But the main story, is of course, that a safe and effective new treatment has been found for children with ME/CFS - even if it is based on pseudoscience!

CS


The ME Association said it had “spoken out robustly” about the trial since it first heard about it in 2010. It said it believed such a trial in children was unethical.

“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS,” said its medical adviser, Dr Charles Shepherd.

“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the Lightning Process believe that they are able to quickly increase their physical and mental activity levels. However, this is can be followed by a relapse or significant worsening of symptoms.

“Others who have gone through the Lightning Process treatment report that they have spent huge amounts of money with no obvious benefit.”
 

Ysabelle-S

Highly Vexatious
Messages
524
Though they do include the obligatory nod to balance from the MEA, The Guardian article is appalling, just regurgitated the standard SMC spin without question. Including the usual 'it's only a minority of nasty activists who deny any psychological component....'

"Its use in CFS has been controversial among those highly vocal activists who resist any attempt to suggest the disease is psychological rather than physical."

"But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better."

This is standard abuse and gaslighting of ME sufferers from the Guardian. I can't see them being the newspaper which will turn the ship around. They have been central to the defaming of seriously ill people. I expect nothing from them. I don't trust them on some other subjects either. Used to be my favourite newspaper, but not for a long time.
 

Cinders66

Senior Member
Messages
494
Crawleys having her glory.

If she can't get biomedical research funded this type of thing will be her raison d'etre, I wish she'd announced the results in front of Montoya and Rowe btw.

She's got her press and publicity from a trial that could be placebo or anything but soon the biomedical research will Just wash all this away - soon rituximab, then the energy metabolism research, then the B & T-cells and antibodies, the big PET scan research. They won't be able to keep ignoring IOMs classification and just perpetuating the debilitating unknown cause illness line which is ripe for pseudoscience and abuse.
 

Sean

Senior Member
Messages
7,378
but unfortunately chronic fatigue syndrome is not an objective diagnosis, it is a leftover category and fatigue is subjective.

Dr Thompson
He really cannot think of a single objective measure of function that might be of some relevance to assessing therapies for ME or CFS?

Why is he being paid?

We need more studies and less polemic.

Prof Sharpe
The blatant hypocrisy is breath taking, but not surprising.
 
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Messages
13,774
Dropout rates are lower than I expected:

SMC: 49 ->37
SMC+LP: 51 -> 44

Edit: data for school attendance less good.

SMC
six months: 37 participants
twelve months: 36 participants

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

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

http://adc.bmj.com/highwire/markup/...h,highwire_inline_linked_media,highwire_embed
 
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Sean

Senior Member
Messages
7,378
This is standard abuse and gaslighting of ME sufferers from the Guardian. I can't see them being the newspaper which will turn the ship around. They have been central to the defaming of seriously ill people. I expect nothing from them. I don't trust them on some other subjects either. Used to be my favourite newspaper, but not for a long time.
I read the Australian version online, because it is good on other matters.

But I refuse to give them a cent until they get their act together on ME. I spend my media dollars elsewhere.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
  1. https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis

  2. The Guardian has linked its article to this old chestnut.........again.
    Chronic fatigue syndrome researchers face death threats from militants
    Scientists are subjected to a campaign of abuse and violence
    Professor-Simon-Wessely-007.jpg

    Professor Simon Wessely has felt safer in Iraq than in Britain. Photograph: Laura Mtungwazi for the Observer
    • Robin McKie

      Sunday 21 August 2011 00.06 BST First published on Sunday 21 August 2011 00.06 BST

      The full extent of the campaign of intimidation, attacks and death threats made against scientists by activists who claim researchers are suppressing the real cause of chronic fatigue syndrome is revealed today by the Observer. According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.

      One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife. Another scientist had to abandon a collaboration with American doctors after being told she risked being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.
 

snowathlete

Senior Member
Messages
5,374
Location
UK