BBC news, 21 Sep 2o17: Chronic fatigue therapy ‘could help teenagers’, study says:
What is the Lightning Process?
- a training course that teaches how to use the brain to improve the body’s level of health
- it is run over three half-days in group sessions and costs about £650
it focuses on using simple exercises, movements and gestures to help stimulate recovery - it combines elements of osteopathy, life coaching and neurolinguistic programming
- the scientific community is sceptical of it
no previous research had been done to investigate how effective it is - it is not available on the NHS
Coyne of the realm blog post, by James Coyne, 17 Sep 2017: Embargo broken: Bristol University Professor to discuss trial of quack chronic fatigue syndrome treatment.
This blog post provides an alternative press briefing to compare and contrast with what was provided by the Science Media Centre for a press conference on Wednesday September 20, 2017…
As an American who has decades served on of experience with Committees for the Protection of Human Subjects and Data Safety and Monitoring Boards, I don’t understand how this trial was approved to recruit human subjects, and particularly children and adolescents. I don’t understand why a physician who cared about her patients would seek approval to conduct such a trial.
Participation in the trial violated patients’ trust that medical settings and personnel will protect them from such risks.
Participation in the trial is time-consuming and involves loss of opportunity to obtain less risky treatment or simply not endure the inconvenience and burden of a treatment for which there is no scientific basis to expect would work.
BBC radio 4 programme Today, 21 Sep 2017: Chronic fatigue: A new approach?
Interview with Esther Crawley and past patient. [available for 6 days]
BBC radio 4 programme Today, 22 Sep 2017: SMILE trial
Interview with Dr Charles Shepherd starts 51 minutes in – 5 minutes.
Science Media Centre blog post, 20 Sep 2017: A controversial treatment for children with chronic fatigue syndrome – The Lightning Process
Science media centre expert reaction, 20 Sep 2017: expert reaction to controversial treatment for CFS/ME
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.”
The Guardian article, by Sarah Boseley, 20 Sep 2017: Controversial Lightning Process ‘helps children with chronic fatigue syndrome’
This article focuses on Esther Crawley’s claims, celebrity support for the LP and concludes with Dr Sheperd’s opposition to it.
JK Rowbory blog post, 201 Sep 2017: When you beckon lightning and invite it in for tea
Today it is being reported in the news that an experimental trial of the LP on children and teens with M.E. has been successful. The fact that the results are based on the children and teens themselves saying that they have recovered, is extremely worrying to me. During the six months that I was brainwashed with the LP, I would have said the same: that I was cured, that I was recovering and that the LP was successful. Those poor children. They are even more vulnerable than I was. What they have been subjected to is nothing short of abuse and should never have been allowed to happen in the first place.
Whatever you do, please don’t send news articles about the Lightning Process to anyone with M.E. It’s a dangerous thing. Don’t beckon lightning and invite it in for tea; it will burn your house to the ground with you inside until you’re nothing but ashes.
The Telegraph article, by Henry Bodkin, 21 Sep 2017: M.E. ‘Lightning Process’ trains the brain to ward off tired thoughts
Net Doctor blog post, by Natalie Healey, 21 Sep 2017: The Lightning Process: Does this controversial (and expensive) chronic fatigue syndrome treatment really help patients?
Despite new research, ME experts remain sceptical and say it could be damaging
ME Association blog post, 21 Sep 2017: The SMILE trial is published
‘Dr Charles Shepherd, medical adviser for the ME Association, said:
“The Lightning Process is not a treatment that we endorse or recommend for people with ME/CFS.
“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms.
“Others who have gone through the LP programme, report that they have spent huge amounts of money with no obvious benefit.
“There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.
“We will be looking at the release of the SMILE trial results very closely indeed
Action for ME blog post, 20 Sep 2017: SMILE Trial results published: Action for M.E. comment
We are extremely surprised to see that the Lightning Process, described by its proponents as “a training course” that employs tools including “gentle movement, meditation-like techniques and mental exercises” offers improvement for some young people with M.E.
It is very important to note that:
- young people severely affected by M.E. were excluded from the trial
- many young people who were eligible chose not to take part in the trial, so we don’t how the treatments tested might have worked for them
- this trial offers no evidence of the efficacy of the Lightning Process when used in isolation (ie. not in addition to specialist medical care).
The results of this trial indicate that the Lightning Process in addition to specialist medical care reduced participants’ feelings of anxiety and depression. However, supporting young people to cope better with the emotional impact of a chronic neurological condition addresses neither the root cause of the condition nor its primary symptoms.
The trial also shows that, compared to those having specialist medical care alone, participants undertaking Lightning Process in addition to specialist medical care experienced a greater improvement in physical function over time and, one year later, reported attending one day more of school each week.
The research team acknowledges in their paper that they do not know which aspects of the treatment administered were the most effective, or why this led to improved outcomes.
What we do know is that this trial cannot be used as evidence to prove that M.E. is a psychological condition. Making this assumption not only flies in the face of growing biological evidence to the contrary but also does considerable damage to patients by perpetuating the misunderstanding that this devastating condition can be overcome with behavioural treatments.
