The Lightning Process for ME/CFS: pseudoscience or miracle cure?
The Lightning Process (LP) is a popular alternative medicine technique developed by Phil Parker that many ME/CFS patients use. It has a large number of positive and negative testimonials. For some patients it is a miracle cure, allowing them to recover completely from being bedbound in a nursing home with ME/CFS, while for others it causes worsening of their illness as they try to push through symptoms.
Although the training process for Lightning Process therapists specifically says that patients should not push through symptoms or be blamed for the treatment not working, many patients who attend LP courses do find that they are told to ignore symptoms, pretend they are cured, or are blamed if they don’t recover quickly (see Joan McParland’s experience and the NICE Guidelines evidence table 77).
The theory behind LP is that ME/CFS and other conditions (as it isn’t specifically designed for ME/CFS) have a dysregulated stress response, and normalizing this stress response can cure the illness. The technique itself is described in detail in Phil Parker’s book: Get the Life You Love and in a paper by Phil Parker.
LP is a three day course, and involves a 3-phase strategy:
[1] Awareness of the activation of unhelpful neurological pathways.
[2] Interrupting those pathways (“STOP”).
[3] Redirection using compassionate self-coaching and support techniques to identify the desired affective or physiological state, and encouraging the activation of that desired state using visualization and memory.
During the training course, participants practice standing on a physical paper representation of the various states, but eventually they will visualize the states in their mind rather than using the physical props.
The technique has been harshly criticized, being called a “pot-pourri of woo woo”, and Phil Parker has been called a “charlatan”. LP is partly based on neuro-linguistic programming (NLP), which has a limited evidence base and has been described as pseudoscience. However, the actual intervention in LP (as shown above) is very similar to CBT, which involves learning to recognize distortions in thinking that are causing problems, and then evaluating those thoughts and beliefs. The problem with LP, at least when used to treat ME/CFS, is that it is mostly used when symptoms occur rather than simply when there are fears or other negative cognitions, and symptoms may not be directly caused by any particular cognition at that particular moment.
As for the theory behind LP: although it is somewhat light on details, there is certainly evidence that stress is a significant factor in ME/CFS.
There has been one clinical trial investigating the effectiveness of LP in children: the SMILE trial. It looked at LP as an add-on for specialist medical care (SMC) for ME/CFS in children, and it found that physical function significantly improved with LP+SMC compared to SMC alone.
The quality of the trial was classed as very low to low by NICE. There are a few reasons for this. The primary outcome was changed during the trial from school attendance to physical function, as school attendance was not deemed to be a reliable marker of improvement:
“parents and participants ‘commented that the school attendance primary outcome did not accurately reflect what they were able to do, particularly if they were recruited during, or had transitioned to, A levels during the study.”
and:
“we were aware of some participants who had chosen not to increase school attendance despite increased activity”
Still, the SMC+LP group did end up having significantly better school attendance than the SMC group.
The second reason for the low quality rating is due to the fact that it doesn’t have a proper control group: it simply added on LP as an additional treatment. This means that non-specific psychological effects such as attention, support, self-efficacy, stress reduction, etc. may have affected the results. While there is nothing wrong with a treatment addressing those factors, the problem is that the improvement could be attributed to the specific method used in LP rather than these other non-specific (or placebo) effects.
There is nothing inherently bad or unscientific about LP or the SMILE trial. LP is certainly lacking in high quality clinical trials, but it isn’t in the realm of pseudoscience or magic either.
The main problem that it shares with the CBT and GET treatments as used in the PACE trial is that the underlying theory being used as a basis for the treatment is too simplistic, and it risks causing deterioration if applied incorrectly. The PACE trial was based on the theory that ME/CFS is primarily perpetuated by deconditioning and fear avoidance. Although these can be factors for some patients, they do not seem to be central to the illness, and basing a treatment around them implicitly encourages patients to go beyond their current activity tolerance, resulting in deterioration for many patients (even if on average patients improve after the treatment, as happened with the PACE trial).
With LP, the problem is that it puts the entire cause of illness down to unhelpful neurological patterns that can be reversed with a simple mental technique. When the technique doesn’t work and symptoms are still experienced, it is natural for patients to feel guilt and shame, or to believe they aren’t doing the technique properly, or for the coach to blame the patient. Although, as mentioned above, the LP training course for practitioners specifically tells them not to blame the patient, you can see this on one LP practitioners’ website:
Am I to blame if it doesn’t work?
No. Blame is a concept that has no place within the Lightning Process. If a participant is not getting the results they want, their practitioner will work with them to help discover what is missing from their understanding of the training and then work with them to find ways to re-explain and practice the missing elements.
However, this is a training programme and the LP is a process. If you understand it and you know how to do it but you don’t actually practice it, then the process, like any other process that you use incorrectly… won’t work!
So, the patient is not to blame, but if the technique doesn’t work then we will just explain to them how to do it properly, or tell them to practice more! Clearly this is patient blaming by the back door, even though it seems more likely that the problem is with the theory behind the treatment.
While stress, unhelpful cognitions and emotions can certainly cause worse symptoms in ME/CFS, and uplifting activities can result in improvement, this generally seems to be a gradual, long-term process. The body’s stress system, in particular, has evolved to respond to short-term and long-term stressors. The HPA axis, which controls secretion of cortisol from the adrenal glands in response to stress and energy demands, adjusts its output over a period of days and weeks in order to adjust to the physical and psychological demands placed on the body. Typically ME/CFS patients tend to have a blunted HPA axis response (low stress response), which tends to normalize after successful treatment. However, this is a long-term change, and it seems unlikely that a patient in a “crash” would be able to instantly turn off their symptoms.
LP seems more useful in cases where anxiety or negative conditioning has developed around a particular activity, but not as a general treatment for ME/CFS. LP was not in fact developed specifically to treat ME/CFS, and is promoted as a treatment for a wide variety of illnesses.
There are a variety of “brain training” courses for ME/CFS, and they vary widely in their scientific basis. Quite often they are very simplistic, or include a lot of pseudoscientific elements. Patients are drawn to these programmes because the health service is typically worse than useless, and LP seems to be one of the most popular self-help courses used by ME/CFS patients.
One ME/CFS course I came across recently was developed by a recovered patient, Jan Rothney and is detailed in her book. Jan is a psychologist and stress counsellor, and she lectured in health and social care for many years prior to developing ME/CFS. She understands that recovery is a long-term process, and her book gives a lot of advice and techniques for gradually coaxing the body, over time, into developing a greater tolerance for activity and stress. Although she does have a “traffic light” technique that is somewhat similar to LP, it is only one part of her programme, and it is based on a social skills training technique. (She does stress that this particular technique shouldn’t be used when a patient is in the middle of a severe crash, and is really more of a quick fix in the situation where a patient is already improving but has developed a conditioned negative response to a particular situation).
Jan gives an example where she was able to walk around her house, but fell down immediately on going outside. She realized that this (unconscious, severe and physical) response by the body was irrational, and that her body had associated outside with danger. She was able to gradually override this response over time. She also gives examples of times where she was unable to get out of bed for days at a time, and during those periods she used relaxation and other psychological techniques to avoid negative stress, while making very gradual increases to activity when she was able. Small successes were important in showing her brain that she could do those activities without crashing. The end result is that Jan has been able to recover to normal health.
Any treatment or recovery programme needs to take account of the various factors that can influence ME/CFS, and fit with the experiences of patients. LP is a technique that has some science behind it, but is based on a partial understanding of the illness, and if applied inappropriately can result in negative experiences for patients.
Notes:
[1] I have no affiliation with Jan Rothney and make no revenue from her programme or her book. It is just one of the most useful and sensible “brain training” programmes out there.
