The Lightning Process understandably raises hackles in the ME/CFS community. Phil Parker is viewed as a charlatan by some and an impediment to the hard science needed to understand this disorder by others. The LP’s notoriety, it’s rapid spread to many countries, and the fact that some people with ME/CFS do well with the process, however, makes it impossible to ignore. Now that a major study is underway on the LP, we take a look at it.
The Lightning Process is nothing if not controversial. The very name –suggesting an almost overnight ‘cure’ – seems like a slick advertising ploy. It’s been taken to task for making unvalidated and ‘misleading’ claims by the Advertising Standards Authority in the U.K.
According to Wikipedia, the Lightning Processes promotional materials have stated that people with disorders ranging from chronic fatigue syndrome to autism to multiple sclerosis, cerebral palsy and Parkinson’s disease have experienced ‘significant improvements’ from doing the Process.
The fact that the first major ME/CFS study for some reason involved children (12-18 age range) aroused great trepidation. It’s been called an ‘abracadabra’ approach to ME/CFS, is listed in Wikipedia as ‘pseudoscience’ (along with chiropractic, acupuncture and craniosacral therapy) and the three day course is expensive.
The Lightning Process and its associated websites also provide stirring and sometimes amazing testimonials from people who have reversed years of illness. A woman who’s been bedbound for 10 years returns to health. A decade long illness that disappeared in several months. People who were sick are running marathons and climbing mountains.
I learned about the LP when I was corresponding with person with ME/CFS who was at her wits end. She was about to embark on a costly and possibly damaging treatment from a well-known ME/CFS practitioner when she decided to try the LP. She popped up quite healthy a year later. (Check out her husband, an MD, on the Process. )That was an eye-opener.
Mind Over Matter?
“I designed it for people who were stuck — everything I had tried that worked on everybody else didn’t work for them. I had run out of tools.” Phil Parker
In a video Phil Parker stated the genesis of the Lightning Process began after he recovered from a devastating wrist injury that all the medical experts except for one said would leave him disabled. Believing that his beliefs played a large role in his recovery, he developed an interest in seemingly irremediable illnesses. He states he sees many people with chronic fatigue syndrome, multiple sclerosis, chronic pain and other difficult to treat disorders.
“It teaches you how the brain works, and to train your brain and body to work together to influence your health,” she says. “We look at how the mind influences the body and how the body influences the mind. A Lightning Process instructor
Phil Parker states his Lightning Process approach is predicated on a physiological breakdown in the sympathetic nervous and adrenal systems that leads to a constant state of arousal that feeds on itself.
According to a Wikipedia article the Lightning Process alters the thought patterns induced by this state of physiological overdrive in order to reduce the output of stress-related hormones. Parker believes the processes producing the stressful thought patterns can be reversed by introducing thought patterns, postures and movements that allow the body to calm down and resume a healthful state.
The Lightning Process website states it uses movement, posture and coaching to help people to learn how to use a step by step process to turn the state of over-excitation off. Just as in the Amygdala Retraining process, participants are asked to use a physical movement to stop negative thoughts that are appearing. The process seems to tie together positive thinking, neurolinguistics, the stress response, and physical techniques.
Studies and Surveys
No rigorous studies have yet been done on the Lightning Process. The LP website reports that preliminary results from a large outcomes study containing people with chronic fatigue syndrome (64%), anxiety (17%), multiple sclerosis and fibromyalgia (3%), found significant increases in all aspects of the SF-36 scale.
The Lightning Process was the most effective treatment (in a limited) ME Association 2008 survey with 45% of responders stating they improved greatly (26%) or improved (19%). Twenty-one percent reported they were worse off. Fifty-four percent reported no improvement or felt worse.
The LP website also reports that a small proof of concept multiple sclerosis trial had favorable results with participants particularly reporting improved scores on role limitations due to emotions and energy/fatigue.
Dr. Leslie Findley clinical neuroscientist running a LP pilot study in ME/CFS reported that most participants derived benefits from it and thirty percent had no change. He emphatically denied that the results mean ME/CFS is a psychosomatic disorder, stating it was a ‘disorder of the brain’. He didn’t think the LP was the cure-all and end-all for ME/CFS that the LP website and some LP practitioners suggest, stating “I just see this as another way of helping patients that haven’t responded to much simpler approaches.”
Even the Lightning Process does not talk in ‘cures’ so much anymore. A large survey found that 75% of people who did the course reported ‘good change’ and improved ‘well being’ afterwards.
The Big Study
Now Esther Crawley’s study is giving the Lightning Process its first big scientific trial. Containing from 80-112 children and young people, this study will add the Lightning Process to the standard CBT criteria the UK practitioners provide. The primary outcome will be the Physical Function subscale of the SF-36 questionnaires which appears to ask how limited one’s activity is by ones physical functioning. Other questionnaires (Chalder Fatigue Scale, etc.) will be included.
According to Esther Crawley here’s much of what the course will entail:
- The course is three sessions on three consecutive days. Each session is three hours and forty-five minutes long. Group sessions will include three to five young people between 12 and 18 years of age who live within the region covered by the CFS/ME service. During the group, children and young people will receive a theory session and a practical session.
- The theory session will include taught elements on the stress response, how the mind-body interacts and how thought processes can be both helpful and negative. The language used by young people will be discussed and in some cases challenged. Young people will be encouraged to think about what they may be able to take responsibility for and change. The taught sessions are followed by a group discussion.
- The practical session is used to put some of the skills learnt into practice. Young people identify a goal they wish to achieve (such as standing for longer) and are then given alternative ways to think about and prepare for this. This involves using different cognitive (thinking) strategies before and during the period in which achieving the goal is attempted. Young people are also asked to identify a goal wherein they can practice the strategies in the afternoon or evening. This goal will usually be short but could be an activity that is up to 30 minutes long.
- The LP practitioner will then arrange two follow-up phone calls with the young person and parents within two weeks of the course and then approximately six to eight weeks later.
Arousal and Chronic Fatigue Syndrome
I definitely have a lot of system ‘arousal’. My experience is that I can use various techniques do away with at least part of it, allowing me walk more and feel better. Exercising vigorously is pipe-dream at this point, however.
It’s not clear how common or important a state of ‘arousal’ is in ME/CFS in general. My guess is that it’s pretty common, but that many people have other issues going on as well. While abnormalities in the HPA axis have been found, my sense is that researchers have found more fruitful areas to explore, and it’s not the major emphasis that it was.
The recovery stories project I’ve taken on has left me with no doubt, though, that the LP and similar techniques (as well as antivirals, immune modulators, alternative medicine, diet, etc.) can have powerful affects when applied to the right patient.
The ME Association survey finding that approximately 25% of LP participants ‘improved greatly’, however,’ left about 75% who did not improve greatly (and 55% who did not improve at all). I don’t think Toni Bernhardt needs the Lightning Process :). I think she needs help for her immune system.
My guess is that this study will show some people will benefit significantly and that a significant number of people will have no, small or only moderate benefits.
‘Next Generation’ Mind/Body Techniques
CBT has been studied to death in ME/CFS and the Lightning Process, the Amygdala Retraining Program and other ‘next-generation’ mind/body techniques have begin showing up in studies. (A small Amygdala Retraining study found significant benefits for some and not for others.) It’s worth noting that all these techniques (Lightning Process, Amygdala Retraining Program, Mickel Therapy, Reverse Therapy, Dynamic Neural Retraining System) propose the main problem in ME/CFS is a stress response system (sympathetic nervous system/hypothalamus/adrenal system) in overdrive.
Hopefully this study is rigorously designed enough to provide real answers. The danger is that the media, particularly in the UK, will over hype the positive effects of any mind/body study. The promise is that some people may be lead to something that helps.
What do you think about this study? Will it be helpful or hurt? If it’s successful would you try the LP or similar techniques? If you’ve tried the LP how did it go?
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.