SMILE Trial results published: Action for M.E. comment
September 20, 2017
Results of a trial published today show that a small cohort of young people with mild or moderate M.E. report improvement in their symptoms after undergoing the Lightning Process in addition to specialist medical care. Published in the Journal of Archives of Disease in Childhood, this trial was undertaken by a team led by Prof Esther Crawley, University of Bristol.
What is Action for M.E.’s view?
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.
Range of experiences
The wide range of experiences reported to us by people with M.E. show that the symptom management approach most commonly cited as helpful by people with M.E. is pacing, though it does not provide benefit to all. Some find GET and/or CBT helpful; others find they make no difference, or make their symptoms worse, especially those who are more severely affected. We also hear a variety of experiences reported about many alternative approaches, including the Lightning Process.
On this basis, Action for M.E. does not recommend any single form of intervention or treatment for M.E. We also consistently advise people to examine with scepticism any treatment, therapy or other approach which claims to offer a cure, has not been subject to research published in respected peer-reviewed journals and requires the payment of large sums of money.
The fact that people with M.E., and parents seeking treatment options for their children with the condition, even consider a treatment approach that has been ruled by the Advertising Standards Authority as “likely to mislead consumers regarding [its benefits]” shows just how desperate the situation is for these vulnerable patients.
This is due to the fact that there are no treatment approaches that offer reliable and significant improvements for everyone with M.E., and we still face the issue of not knowing enough about the biology of M.E. to target treatments appropriately. Lack of investment in research and specialist healthcare provision for M.E. leaves large numbers of people with M.E. unable to access the support they desperately need.
This is absolutely not good enough, and it must change. That is why Action for M.E. actively supports investment in collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to effective treatments that target the biology of M.E., and hopefully a cure. We will continue to work to ensure that the voices and experience of people affected by M.E. and CFS lie at the heart of this.