1
The
British
Psychological
British Journal of Health Psychology (2012)
© 2012 The British Psychological Society Society
www.wileyonlinelibrary.com
Experiences of young people who have
undergone the Lightning Process to treat
chronic fatigue syndrome/myalgic
encephalomyelitis – a qualitative study
Silje Endresen Reme1*, Nicola Archer2 and Trudie Chalder2
1
Harvard School of Public Health, Harvard University, Boston, Massachusetts, USA
2
Department of Psychological Medicine, King’s College London, UK
Objectives. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious
condition characterized by debilitating but unexplained fatigue. Treatment alternatives
are few, and especially so for young people. The aetiology of CFS/ME is still unclear and
controversial, but rehabilitative interventions seem so far most promising. The Lightning
Process is a 3-day training programme that has recently become available, but no outcome
studies have yet been published. It is a non-medical training programme that combines
concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. The aim of
this study was to explore the experiences of young people with CFS/ME after they had
undergone the Lightning Process.
Design. Qualitative research study.
Methods. Semi-structured interviews were conducted with an opportunistic sample
recruited through open advertisements of nine young people, aged 14–26, who had
undergone the treatment, and three of their parents. Inductive thematic analysis was used
to evaluate the content of the interviews.
Results. Mostly positive experiences were reported of the Lightning Process. Two
reported dissatisfaction and no improvement, while seven were satisfied and were much
improved. Particular helpful aspects were the theoretical rationale, practical exercises,
and the technique they learned. Less helpful aspects were the intensity and short duration
of the treatment with little follow-up, the secrecy surrounding it, and feelings of being
blamed if the treatment did not work.
Conclusions. As this is the first report of young people’s experiences with the Lightning
Process, it will be important to consider the helpful and unhelpful treatment components
for future refinement of interventions for CFS/ME.
*Correspondence should be addressed to Silje Endresen Reme, 450 Brookline Avenue, LW 731, Boston, MA 02215, USA (e-mail:
sreme@hsph.harvard.edu).
DOI:10.1111/j.2044-8287.2012.02093.x
2 Silje Endresen Reme et al.
Statement of contribution
What is already known on this subject? Treatment alternatives for people with CFS/ME are few,
especially for young people. The Lightning Process is a popular treatment programme that has
recently become available, but no studies involving the treatment have yet been published. Feelings
of blame or dismissal in CFS/ME patients lead to withdrawal or disengagement from professionals.
What does this study add? The Lightning Process for young people with CFS/ME encompasses
many positive aspects, particularly the practical aspects of the treatment programme. The more
extreme position taken by the Lightning Process in denying the limitations of the illness seem to
produce divergent results in various young people; some found it liberating and therapeutic, whilst
others did not respond well to it and were left feeling guilty and blamed.
Chronic fatigue syndrome (CFS) is characterized by debilitating but unexplained severe
fatigue and associated symptoms, which are not the result of organic disease or on-going
exertion and are not alleviated by rest (Fukuda et al., 1994). The prevalence of CFS varies
depending on definition, methods of measurement and setting. Data from 14 different
countries found the prevalence of disabling fatigue to be 1.7% (Richards, 2000), while a
recent study from the UK found an incidence of 0.5% over a 4–6 month period in a random
population sample of 5–15 year olds (Rimes et al., 2007).
The CFS-like conditions are not new phenomenon but were seen and described several
centuries ago (Chatel & Peele, 1970; Shorter, 1992). In the early 1980s a new and
increased interest appeared for CFS with the introduction of the label myalgic
encephalomyelitis (ME), which is originally a 30-year-old term for an epidemic of
neurological symptoms (Prins, van der Meer, & Bleijenberg, 2006). For readability
purposes we will use the term ‘CFS’ to cover both ‘CFS’ and ‘ME’ labels hereon. The
aetiology of CFS is still unclear and controversial, but there are increasing agreements
about complex interactions between physiological, cognitive, behavioural, affective, and
social factors in the development and maintenance of the illness (Prins et al., 2006). The
CFS shares common risk markers with other functional somatic syndromes, but it has been
hypothesized by some researchers and clinicians to be a discrete functional somatic
syndrome that is made up of different sub-phenotypes (White, 2010).
Different treatment approaches for CFS have been investigated, but only graded
exercise (Fulcher & White, 1997) and Cognitive Behavioural Therapy (CBT) have been
found to be effective for adult CFS patients (Deale, Chalder, Marks, & Wessely, 1997; Price,
Mitchell, Tidy, & Hunot, 2008; Prins et al., 2001; Sharpe et al., 1996; White et al., 2011),
although a recent phase II study showed promising effects of the anti-CD20 antibody
Rituximab in fatigue symptom reduction (Fluge et al., 2011). Although less studied in
adolescents, recent findings indicate promising results from CBT for younger groups of
CFS patients as well (Chalder, Deary, Husain, & Walwyn, 2009; Stulemeijer, de Jong,
Fiselier, Hoogveld, & Bleijenberg, 2005).
One recent intervention for CFS, which has received considerable attention in the
media and public, is the Lightning Process (Parker, 2011). The Lightning Process is a 3-day
training programme as an intervention for CFS, which is typically paid for privately. It was
designed in the late 1990s by British osteopath Phil Parker, but has so far not been
described in any scientific publications as far as we know. Parker states that CFS is a
physical illness that arises from a dysregulation of the central nervous system and
autonomic nervous system. The Lightning Process aims to address this by breaking the
‘adrenaline loop’ that keeps the systems’ stress responses high. This is done by modifying
Lightning Process for CFS/ME 3
the brain’s thought patterns to reduce stress-related hormones. Although marketed as
‘training’ rather than ‘therapy’, it appears to share some broad commonalities with
psychological therapies, particularly cognitive behaviour therapy, such as discussion of
maintaining cycles, mind-body links, goal setting, exploration of helpful and unhelpful
thought processes and ‘homework’ to practise outside of sessions. It is described to be a
non-medical training programme that combines concepts from Neuro-Linguistic Pro-
gramming, Life Coaching, and the principles behind Osteopathy. The treatment providers
are not medical professionals but registered Lightning Process Practitioners. To become a
licensed practitioner individuals have to complete a minimum of 12 months intensive
client-based training with the Phil Parker Training Institute ending with a qualifying exam
to receive the diploma. The training involves a combination of Neuro-Linguistic
Programming, Life Coaching and Hypnotherapy. Most of the practitioners have also used
the Lightning Process themselves to overcome previous health conditions such as CFS
(Parker, 2011).
The Lightning Process seminars are run on 3 consecutive days and take about 3–5 hr
each day. On day 1, participants learn about ‘the physical emergency response’ (PER).
This is described as the body’s natural response to a threat and involves activation of the
sympathetic nervous system along with production of hormones such as adrenaline, nor
adrenaline, dopamine, cortisol, and DHEA. Although a good way of temporarily dealing
with threats, the PER could have detrimental effects on different body systems if sustained.
This includes disruption of the immune system, the muscular system, the digestive
system, and the nervous system. Participants are further introduced to the ‘Physiological
Catch 22’, which is an important element of the Lightning Process. ‘The catch’ involves an
onset ‘event’, whatever its cause, which results in creating an extreme PER. The PER
stimulates the sympathetic nervous system, and the increased and prolonged response of
this system in combination with the original symptoms will then lead to a downward
spiral. The spiral will further be worsened by the added effect of emotional distress. By
learning about these physical processes and how to influence them, participants are
expected to recover from their CFS. Through ‘the process’, participants learn how to spot
when the PER is occurring, how to calm the PER through specific steps (using movement,
posture, and coaching), and how to make this change permanent by practising the steps
until they become automatic. The Process is learned on day 1 and participants are
encouraged to start practising the techniques immediately. The Process can be done in
group sessions or one on one. The theoretical rationale which emphasizes physiological
processes and causal attributions is probably what distinguishes it most from traditional
CBT. In addition the short and intense duration of the sessions differs to the CBT hitherto
tested in the context of CFS where treatment is delivered over a longer period of time.
To the best of our knowledge, no clinical trials have so far been conducted to
investigate the effectiveness of Lightning Process, although surveys of people attending
the programme in Norway and UK show some promise; 81% of the participants reported
that they no longer had the issues they came with by Day 3 of the course, and 86%
attributed the improvements to the course (Parker, 2011). Anecdotal stories of rapid
recoveries, some reported by celebrities, have further been portrayed in the news media,
and can probably partly account for the increased popularity of this particular
intervention programme.
A few studies have investigated CFS patients’ experiences of general medical
encounters (Ax, Gregg, & Jones, 1997; Deale & Wessely, 2001; Samson, 1999), but despite
encouraging results from CBT trials and promising case reports from the Lightning Process,
there is a paucity of research on qualitative experiences of young people having
4 Silje Endresen Reme et al.
psychological therapy for CFS. One recent study investigated the views and experiences of
young CFS patients after a family-focused CBT (Dennison, Stanbrook, Moss-Morris, Yardley,
& Chalder, 2010), but no such studies have ever been conducted for the Lightning Process.
Surrounded by stigma, with on-going debates about mental versus physical causes of the
chronic fatigue, the need for new insights to guide intervention development is imperative,
both in terms of treatment acceptability and effectiveness. The limited prior knowledge of
the Lightning Process in the scientific literature calls for both quantitative and qualitative
studies. Whilst quantitative trials provide important information about treatment efficacy,
they provide limited information about process indicators (e.g., therapy experiences).
A qualitative study of young CFS patients’ perceptions and therapeutic experiences will
both provide valuable insights in this controversial but popular treatment, as well as put us
in a stronger position to refine our treatments in general to better meet their needs. In
particular, it is important to understand which aspects of therapies are perceived as leading
to engagement and symptom improvement by exploring the range and complexity of their
treatment experiences. Of equal importance is the knowledge and understanding of
potential adverse effects they may have experienced following this new and controversial
intervention.
Both the CFS diagnosis and the Lightning Process intervention are surrounded by
controversy and diversity of opinion. An exploration of the participants’ own perceptions
of the programme as well as their recollection of more or less helpful aspects will thus be
of great value for both treatment development and hypotheses generation. The aim of the
current study was to explore the experiences of young people with CFS who had
undergone the Lightning Process to gain insights from these experiences to further
develop and refine treatments for this particular group. Specifically, we aimed to increase
our understanding of beneficial and possible adverse effects of the Lightning Process, as
well as the participants’ attributions of the particular aspects of the programme that
caused the effects.
Method
Semi-structured interviews were conducted with young people who had undergone the
Lightning Process to treat CFS, with the aim of exploring their experiences of the
treatment programme. Supplementary interviews were conducted with the mothers of
participants aged 18 and below. Transcribed interviews were then analysed qualitatively.
All authors of the study have been involved in behavioural approaches to CFS in their
previous and current work, but are not associated with the Lightning Process programme or
organization in any way, thus allowing us to be impartial and not pre-empt either positive or
negative outcomes. This was made clear to the participants from the very beginning of the
interviews to ensure that we would not pre-empt particular responses. Other measures
taken to ensure this involved avoiding statements with a judgemental quality, including
questions about both positive and negative experiences, and striving to create an empathic
atmosphere to allow for the participants’ unique experiences to come to the fore.
Recruitment
The study sample was recruited through an advertisement on the Association of Young
People with ME (AYME) website. AYME is a fundraising and support organization for
young people with CFS. It has a high number of active participants with diverse
experiences of various treatments, as reflected in the discussion boards of AYME, and
Lightning Process for CFS/ME 5
within the targeted age range of interest for the current study. The chosen recruitment
strategy was therefore considered likely to provide the kinds and range of data we were
seeking. The advertisement was posted in May 2007 and invited participation from those
aged between 11 and 25 years who were prepared to talk about their experiences
(‘good or bad’) of the Lightning Process ‘with the aim of improving treatment for CFS in
general, by learning about what parts of treatment people do and do not find helpful to
them.’
Participation was entirely voluntary and no financial incentive was offered to those
who took part. Twelve young people contacted the research team in response to the
advertisement. Information about the study and consent forms was posted to potential
participants, and study-related queries were addressed over the telephone and e-mail.
Two young people then decided that they did not wish to participate, and one young
person was not contactable for interview. The remaining nine young people
participated in the study. Three of those participating were 18 years or younger and
thus supplementary interviews were conducted with their mothers. The rationale for
asking mothers as opposed to fathers was that the mothers were more likely to be
available.
Participants
The principal inclusion criterion for the participation in the study was experience of the
Lightning Process to treat CFS, whilst aged between 11 and 25 years. Participants were
required to be English speaking for comparable qualitative analysis of data. The sample
consisted of eight females and one male, between the ages of 14 and 26 years at the time of
study participation. Duration of CFS ranged from 2 to 12 years.
Eight of nine participants met UK criteria (Sharpe et al., 1991) for CFS prior to
undergoing the Lightning Process. Seven of those eight no longer met these criteria at the
time of the study. The participant who did not reach the cut-off for UK criteria for CFS
prior to the Lightning Process did so at the time of the study.
Data collection
All interviews were carried out by telephone over a 2-month period in 2007. This method
was chosen over face-to-face interviews since we assumed that participants may find a
telephone interview more acceptable, given the lower level of commitment it requires, as
well as more flexibility in terms of scheduling. It was hoped that the anonymity provided
by speaking to the interviewer over the telephone would initiate a more open and
uninhibited account of therapy experiences. Following return of the completed consent
form, young people were contacted to arrange a convenient time to be interviewed. The
second author of the paper (NA) conducted the interviews, and with participant consent
all interviews were audiotaped for subsequent transcription and analysis.
A single semi-structured interview approach was employed to explore the therapeutic
experiences of patients and families. Following initial establishment of rapport, open-
ended study questions were posed (see below). Other questions and prompts were
provided as necessary in response to issues spontaneously raised by participants. The
development of questions for the interviews was guided by previous qualitative studies of
interventions for CFS (Dennison et al., 2010), and were further selected with the aim of
encouraging the participant to speak freely about various aspects of the therapy
6 Silje Endresen Reme et al.
experience. In the study introduction given to the participants, it was highlighted that we
were interested in all experiences, good or bad.
During the interviews, questions were pursued in a non-directive manner, using
general expressions of interest (e.g., ‘mmm…’, ‘that’s interesting’, ‘can you tell me more’
etc.). The interviewer generally aimed to employ a warm, empathic approach which
helped to build rapport, and prior to interview had spoken to participants on previous
occasions to explain the study procedures, answer questions, and agree on an interview
appointment which may also have helped build rapport. The participants could take
breaks at any time during the interview if fatigued or for whatever other reason, but none
chose to do so. Furthermore, if any of the participants experienced distress during the
interviews, they would be asked to see their general practitioner for advice. No
participants reported of any distress during the interviews.
The length of interviews ranged from 10 to 60 min (M = 21.4, SD = 13.4,
median = 17.5).
Standard questions for young people
(1). How were you feeling before you started the Lightning Process?
(2). How did you come to choose the Lightning Process?
(3). Before starting the process, what were you expecting from it?
(4). What was the first session like for you?
(5). Tell me about later/further sessions?
(6). What aspects of the sessions did you think were helpful?
(7). What aspects of the sessions did you think were less helpful?
(8). Looking back, how do you feel about your experience of the Lightning Process
overall?
(9). How did the process compare with any other treatment you’ve had for CFS?
(10). Tell me about how you are feeling now?
(11). Looking back what are your thoughts about your illness?
(12). Is there anything else you want to tell me?
Standard questions for parents
(1). How were you and your child feeling before you started the Lightning Process?
(2). How did you come to choose the Lightning Process?
(3). Before starting the process, what were you expecting from it?
(4). What was the first session like for you?
(5). Tell me about later/further sessions?
(6). What aspects of the sessions did you think were helpful?
(7). What aspects of the sessions did you think were less helpful?
(8). Looking back, how do you feel about your experience of the Lightning Process
overall?
(9). How did the process compare with any other treatment your child had for CFS?
(10). Tell me about how your child is now?
(11). Looking back what are your thoughts about your child’s illness?
(12). Is there anything else you want to tell me?
Following the main interview, all participants were debriefed. Some basic additional
clinical and demographic information was also obtained.
Lightning Process for CFS/ME 7
The participants were also requested to complete a checklist form rating CFS
symptoms both immediately prior to the Lightning Process and at the time of study
participation. The checklist is a standardized list commonly used by health care
professionals to determine eligibility for CFS. This enabled the researchers to establish
whether they met UK criteria for CFS at these time points.
Data analysis
Inductive thematic analysis was used to evaluate the content of the interviews (Yardley &
Marks, 2004). Since this is the first qualitative study of CFS patients’ experiences with the
Lightning Process, we wanted to be data-driven and open to unexpected themes in the
data. Thematic analysis involves the detection of themes within the data collected,
combining the analysis of frequency of codes with analysis of their meanings in context.
As opposed to deductive coding, inductive coding draws on the raw information itself,
and not existing theoretical ideas (Yardley & Marks, 2004). Furthermore, since we wanted
to describe how thematic contents were elaborated by groups of participants, rather than
undertake an in-depth analysis within one particular narrative, thematic analysis was
considered the preferred method of analysis.
Audiotapes of the interviews were listened to repeatedly, and transcripts of the data
were thoroughly read and reread to become immersed in the data. Transcripts were
further studied for common and salient themes. Manifest themes were coded, and the
categories were refined by splitting, splicing, and linking codes. Reliability of the codes
was further tested by applying the codes to the same text on two occasions separated by a
week to ensure consistency in the distinction between the codes.
A more idiographic approach was also applied to give a broader perspective of the
individual experiences and to contextualize the findings through a more in-depth
description. Two case histories of contrasting examples were constructed from the data
and used to shed light on where the therapy experience fitted into particular participants’
illness experiences and lives more generally. The case stories were constructed by
re-writing the two interviews into narratives while staying as close to the original style as
possible.
Ethical approval
Ethical approval for this research was obtained from King’s College Research Ethics
Committee (reference CREC/06/07-130). Informed consent was obtained from all
participants prior to participation. Where participants were below the age of 18, consent
forms were counter-signed by their mothers. Before consent was obtained, individuals
were given a full written explanation of the study and time to consider whether they
agreed to participate.
Results
Two participants reported being dissatisfied with the treatment and did not experience
any improvement in their CFS, while the remaining seven reported that they were very
satisfied with the treatment and that they were either much or very much better. The two
participants that were dissatisfied and did not experience any improvement had suffered
from CFS for 4 and 12 years, whilst the three that were most satisfied and experienced
8 Silje Endresen Reme et al.
Table 1. Pre-treatment thoughts and expectations
Young people (n = 9) Parents (n = 3)
Expectations Expectations
Positive – convinced it would work Sceptical
Positive – hoped it would work Hopeful
Few expectations Few expectations
Nervous/anxious Anxious about being too excited about it
Prepared to work hard
Mixed feelings about it
Influence from others
Positive
Negative
Table 2. Experiences with treatment
Young people (n = 9) Parents (n = 3)
General impression of treatment General impression of treatment
Positive Positive
Intensive Quick and easy
Confusing Should be offered to more people
Hard work
Conflicted with other treatments
General impression of effectiveness General impression of effectiveness
Instant cure Instant cure
Gradual improvement Gradual improvement
Not helpful
major improvements had suffered from CFS for 7 years in one case, and 2 years in the
remaining two.
The thematic analysis identified 35 minor themes from the young people’s interviews
and 11 minor themes from the parents’ interviews that could be organized into three
broad categories: (1) pre-treatment thoughts and expectations; (2) experiences with
treatment; and (3) perspectives on effectiveness. The large number of themes identified
reflects the wide range of perspectives expressed by the participants, while the three
broad categories correspond well with the study aims. The results section is structured
according to the three main categories, and Tables 1–3 summarize the themes and their
organization before the text proceeds to discuss and illustrate key (salient and/or
common) findings within each category. Finally, two case examples are presented in more
depth to give a broader perspective on two contrasting experiences of the treatment.
Quotes were chosen based on how well they reflected each of the minor themes, and they
are identified by participant-number (YP, young person; P, parent).
Pre-treatment thoughts and expectations
This category evolves around pre-treatment experiences; how participants were feeling,
symptom-wise and in general, how they came to choose the Lightning Process, and what
they were expecting from it.
Lightning Process for CFS/ME 9
Table 3. Perspectives on effectiveness
Young people (n = 9) Parents (n = 3)
Treatment components that was helpful Treatment components that was helpful
Learning the theory behind LP The theory behind LP
Meeting others with chronic fatigue syndrome The technique
Examples of treatment success
Positive and encouraging staff
The group setting
The practical assignments
Practising the process
The one-to-one sessions
Setting of specific goals
Applications to everyday life
Treatment components that was less helpful
Session were too long
Incomplete explanation of the physiology
Not honest about success rate
Inducing guilt if no recovery
Pressure to be positive
Expecting too fast recovery
The secrecy around it
Too dominant therapist
The cost
Most of the young people reported a history of unsuccessful treatments, with varying
degrees of hopes and expectations for the Lightning Process. Some of them had extremely
high expectations and were convinced the treatment would work: ‘I was convinced that
that would be the end of it, and I really thought that it would make me better’ (YP1).
Others were hoping it would work, but did not express the same certainty as YP1. Some
were less positive in their approach and reported few or no expectations, whilst others
reported more mixed feelings about the whole programme: ‘I think I was a bit mixed with
it, part of me thought it would make me better and part of me thought it wouldn’t work at
all…because I didn’t know anything about it as such, because they don’t really tell you
very much about it’ (YP3). Most of them had heard about the Lightning Process through
other people or through the AYME website. The experiences and opinions of others had a
large influence on the young people’s decision to do the Lightning Process. ‘I was
expecting what happened to my friend, which was that she fairly quickly was able to start
doing all the things she had not been able to do’ (YP5). While positive experiences from
others appeared to be an important engaging factor for most of the participants, one
participant also reported of negative experiences from others: ‘Obviously there are quite a
lot of people against it on there as well, there are lots of kind of pro’s and con’s, like people
said “I’ve tried it and it didn’t work”…and things like that’ (YP2).
The parents were all supportive and hoped the Lightning Process would help their
child, but they were slightly more sceptical and anxious about getting their hopes up than
the young people, as reflected in Table 1. ‘A mixture I suppose, hopeful, somewhat
apprehensive, a mixture of those two really. Obviously you pin all your hopes that it is
going to work, at the same time you hold back something in reserve so that you are not too
disappointed if it doesn’t’ (P6).
10 Silje Endresen Reme et al.
Experiences with treatment
This category involves the participants’ overall experiences with the intervention. It
includes the whole spectre of subjective experiences, good or bad, without elaborating on
specific component effectiveness.
The young people’s general impression of the treatment varied. Most of them found
the format acceptable and helpful, but several comments were raised regarding the
intensity of the treatment, such as the following: ‘It was really, really taxing the first day
because it started at 10 and didn’t finish until about seven in the evening, and there were
also about seven other people there which is like…considering I had been like
housebound for years I hadn’t really got…like, saw anyone, it was like quite a massive
thing. And by the end of the first day I was absolutely shattered’ (YP2). The information
given in the first session was also described as difficult to understand, challenging, and
some of it also in conflict with what other therapists had told them. ‘One thing I found
was that…being under a specialist and doing the Lightning Process…sometimes their
advices conflicted’ (YP3). When other specialists and therapists would advise their
patients to be careful with too much activity and be sure to pace themselves, the
Lightning Process would tell them that they could do anything they wanted without
letting the illness limit them. This was naturally experienced as a conflict, especially for
YP3 who was under the treatment of another specialist while doing the Lightning
Process. The Lightning Process was further described as a lot of hard work, with
expressions such as ‘full on’ (YP3), ‘shattering’ (YP6) and ‘quite hard’ (YP7), but
contrasted with one participant expressing the following: ‘I found it really easy; I thought
it would be more complicated, but it was simple’ (YP8). Even though they experienced
the educational part of the intervention as complicated and difficult to understand, as
illustrated by YP3: ‘I get the basic idea about the adrenaline loops and things like that, but
I don’t understand how that affects the body and things like that’, others still considered
this part necessary and helpful: ‘It made a lot of sense to me actually’ (YP4). The general
impression of the treatments’ effectiveness split the young persons into roughly three
categories, as seen in Table 2; those who experienced an instant healing, those who
experienced a more gradual improvement that continued after the treatment ended, and
those who did not find the treatment helpful. One of those who experienced an instant
improvement expressed it like this: ‘Just WOW really, I mean…. I was thinking last night,
‘I’m better’. The fact that I ever had ME just seems like a million miles away, it doesn’t
affect me anymore at all. I don’t do the process anymore, it is just automatic, I don’t need
to’ (YP9). This was also a person who had suffered from CFS for 7 years. What most of the
young people described was however more like the following: ‘I am so pleased I did it. I
am not completely recovered, and I am still trying to build up the stamina…about
5 months since I did it’ (YP5). Finally, a couple did not find the Lightning Process very
helpful. One of them describes it like this: ‘I think I have got a bit worse since then and I
don’t think that it has really helped me. I don’t know if it would have helped more if I had
had a different practitioner or if I had had more support afterwards’ (YP4). For YP4 the
treatment experience was dominated by a negative interaction with one particular
Lightning Process provider who was described to be too evangelical about the treatment
and not sufficiently understanding and supportive.
Perspectives on effectiveness
This category involves particular aspects and elements of the intervention that the
participants found helpful or unhelpful. The helpful aspects are considered first.
Lightning Process for CFS/ME 11
Several helpful treatment components were highlighted, as listed in Table 3, while
some were unable to pinpoint any particular parts as they found it all helpful. ‘All of it I
think, and it all seemed sort of relevant to…not just people with ME, but something that
could benefit anybody, you know, in the all logical thinking and sensible thinking, if you
know what I mean, and anybody could benefit from that way of thinking, not just
somebody who was ill’ (YP8). One aspect of the treatment that several highlighted was the
educational part, where the participants learned the theory behind the Lightning Process.
The teaching, which also included practical examples of previous success stories,
appeared to give them a rationale they could believe in. ‘The explaining of the process, the
background information definitely helped because it helps you realize how the process
works, and there is no point doing something unless you understand how it works…
otherwise you won’t believe in it enough’ (YP9). In contrast, one of the participants
valued the practical part higher than the education part, as expressed here: ‘The practice,
sort of practically standing up and walking through the process was the helpful bit. The
physiology stuff at the beginning I didn’t find helpful because I don’t think it was fully
explained, cause to be honest I don’t think they fully understand it themselves’ (YP5).
Particular parts of the theory they found helpful were the association between
thoughts, emotions, and body, and how negative thoughts and emotions can affect the
body directly. This bears a high resemblance to CBT with only slight differences in
terminology; where CBT would talk about challenging and changing unhelpful thoughts
and beliefs, the Lightning Process would say something more like the following: ‘…
whenever you get a negative thought, emotional symptom, you are supposed to turn to
one side and with your arm movements in a kind of stop motion, just say STOP like very
firmly and that is supposed to cut-off the adrenaline response’ (YP2). Some were unsure
whether the theory was scientifically valid, but they still found it logical and believable.
The support from other sufferers, and the group setting that allowed the participants to
learn from each other, was also highlighted as helpful aspects leading to engagement and
treatment commitment. ‘It was useful being in a group as well, getting to see other people
walking through it and other people sort of answering their questions was useful’ (YP5).
The therapists and staff were mostly described as positive and encouraging, and the
practical assignments as important for the rapid recovery. They had the opportunity to
practise the process and apply it in their everyday life, and they also realized that it was
their own choice that would really help them recover. ‘I feel that then later on, maybe after
the first month or so, it was more the choice that helped me, the choosing, am I going to go
into the pits? No I’m not, I am going to go to the coach. It was at that stage of the process
that I could feel more of an improvement coming on’ (YP6). The behavioural aspects of
the treatment, ‘the process’, thus stood out as the most important factor for symptom
alleviation and continuing recovery. Finally, the focus on specific goals, and identifying
barriers from reaching them, was also considered a helpful part of the treatment.
The parents generally found the whole process helpful, although it should be noted that
all parents had children who benefited from the intervention. Hence, the themes in
Tables 2 and 3 reflect this fact by only involving positive experiences (gradual
improvement and instant cure) and helpful aspects (the theory and technique). One of
the parents suffered from CFS as well, and therefore participated both on behalf of herself
as well as on behalf of her child. She found the Lightning Process very helpful for both of
them. Specific components that were highlighted were the techniques they learned as well
as the rationale that was given through the theory presented. ‘Yes, I think that was
interesting, because when you have been ill for so many years, you want to know what the
hell is going on, and nobody has any idea…and I wouldn’t say that definitely his ideas and
12 Silje Endresen Reme et al.
reasoning is 100%, because I’m not a medical person, I wouldn’t know, but it made so much
sense that that was actually important to sort of say, ok, now I understand why we have had
these horrible horrible symptoms, and I can understand why the process might work’ (P9).
However, several aspects of the Lightning Process were considered unhelpful. The
length of the sessions was thought to be too long and intense, especially since many of the
participants struggled with focus and concentration. Others described the whole
treatment to be too short, with too little follow-up support afterwards. The cost was also
mentioned as a negative aspect. Some found the teaching confusing and incomplete and
not well organized. There were different opinions regarding the therapists; some had only
good experiences, while others found their therapist too controlling and not open for
critical questions. Alternative viewpoints brought up by the young people would not be
well received, and a few experienced a normative pressure to be happy all the time and not
express any negative feelings, which they found difficult. There was, however,
consistency in the interviews regarding positive and negative characterizations of the
different therapists, indicating that a possible therapist effect could be important for
treatment engagement and recovery. The secrecy surrounding the Lightning Process was
also criticized and was thought to result in unnecessary sceptical and prejudiced attitudes
from people. Unlike other treatments where you can openly share your treatment
experiences with other people, participants undergoing the Lightning Process are
specifically encouraged not to talk to anyone about it. One of the participants describes it
like this: ‘…and also because you are not really supposed to talk about it with other people,
is what he said, because it only confuses you and them. You don’t have anyone to talk to
about it with so you feel kind of alone’ (YP2). Several of the participants highlighted the
secrecy aspect as unhelpful and difficult, resulting in prejudice and lack of understanding
from people around them. Another key criticism was the impression the staff
communicated about the Lightning Process always involving a quick recovery. ‘I think
that the general impression that is being given is that once you have been doing the
Lightning Process, the lightning is quick, you will feel better and can do whatever, whereas
I don’t think that is the right impression. I think that stamina and strength is something that
has to be built up gradually. And I think that could have been covered better’ (YP6).
More serious are still the reactions and experiences of those not recovering from the
treatment. They felt that they were blamed for the lack of treatment success, and
consequentially struggled with feelings of guilt and anger. ‘I think the worse bit for me was
actually after I had done the process and I found it hadn’t been working and I spoke to
(therapist’s name) about it, you get a couple of follow-up phone calls, and I said to him
that it wasn’t working and I didn’t know why, he basically told me it was my fault and that
if it wasn’t working it must be because I wasn’t doing it properly’ (YP4). They also
reported of hearing about similar experiences from other young people who did not find
the treatment helpful, and were told that if they were not getting better it was their own
fault. The last negative aspect that was mentioned was the dishonesty the staff showed
when they claimed the treatment had a 100% success rate. ‘I think the people that run it
say they have 100% success rate, but obviously that is not true, and I just think that the way
they go about it is awful, blaming people that if it doesn’t work then, you know, it’s your
own fault. I think that is absolutely awful’ (YP1).
The parents did not report any unhelpful aspects of the intervention as all their
children recovered and found the intervention helpful.
Two contrasting case studies were chosen to provide further insight into the research
question, namely the exploration of beneficial and possible adverse effects of the
Lightning Process for young people suffering from CFS.
Lightning Process for CFS/ME 13
Case history 1 (YP1, duration of CFS: 4 years)
Before starting the Lightning Process, YP1 was convinced that the programme would
make her better and be the end of ME for her. She was experiencing symptoms of fatigue at
the time, but was not severely affected by the illness. She learned about the programme
through the web forum for people with ME, as well as from a couple of friends of hers who
had recently undergone the programme and found it helpful. She didn’t really know much
about it, except that it involved something she had to do ‘mentally’ and that it would be a
lot of hard work. When the day came and she went to undergo the treatment, she was very
nervous. Mostly because she really hoped it would work, but also because she didn’t know
exactly what to expect. The first day involved a lot of teaching about the brain and how ME
affected the brain. She was asked to think about what she wanted out of life and what was
stopping her from accomplishing those things. She went on to learn the actual process,
which was repeated and practised the two following days. She was assigned her own
counsellor who made sure she understood everything. Right after the programme ended
she felt stronger mentally and better able to deal with her ME, although she wasn’t sure
whether the Lightning Process had anything to do with that. Later, however, her
symptoms got worse and she started to think differently about the whole programme. Her
experience was that the Lightning Process programme placed the full responsibility for
recovery on her; if she didn’t do what she was taught at the seminar, it was her own fault
that she didn’t experience any improvements. This was her first real treatment she had
ever undergone for her ME, and her expectations for recovery were very high. When she
didn’t experience any recovery, and in addition felt blamed for the lack of recovery, she
ended up experiencing a double burden in which she felt both angry and hurt about. She
felt deceived to believe the programme had a 100% success rate, and she felt it was unfair
to blame her for the lack of effect. The only good thing to come out of it was the strength
she had to mobilize in order to work through the difficult time she experienced after doing
the programme. Her effort eventually resulted in a gradual improvement towards
recovery.
Case history 2 (YP7, duration of CFS: 2 years)
YP7 had suffered from ME for 2 years before undergoing the Lightning Process. Her
symptoms involved severe fatigue as well as general dizziness. She had tried several
treatments for ME, including CBT and reverse therapy, but neither of them had really
helped her with the ME. She was now at a stage where she was trying everything to get
better. She learned about the Lightning Process programme through the web forum for
people with ME, and had there been in contact with several people who had completely
recovered after undergoing the programme. Although a little concerned that it wouldn’t
work, she refused to give up and managed to get herself excited and worked up about it.
The first session was quite hard with a lot of information, but she was determined to make
it work and paid careful attention to what was being said. It didn’t work right away, which
she experienced as quite frustrating, but she kept trying and persevered until it started to
work. The individual sessions were the most helpful to her. She was there being made
aware of the specific thought processes that she had to work on and change, which could
be quite different from patient to patient. She realized how the illness had infiltrated
almost every aspect of her life, and how every little thought and behaviour had been
affected by it. She learned how thinking about the illness could make the illness worse,
while the opposite could promote recovery. And for YP7, it did lead to recovery. After
finishing the Lightning Process, she was soon able to resume full-time work. When
14 Silje Endresen Reme et al.
reflecting on the differences between Lightning Process and CBT, she noted some
important differences. Although similar in its focus on changing patterns of thoughts and
behaviour, her experience was that Lightning Process had a more radical approach. While
CBT was more about accepting the illness and coping with its restrictions, Lightning
Process was more about refusing to let the illness have any control or influence at all. The
methods of gradual increase of activity and behaviour were quite similar, but the beliefs
and motivation underlying the behaviour were slightly different. And for YP7, the
Lightning Process approach seemed to work best.
Discussion
To our knowledge, this is the first qualitative study investigating participants’ experiences
with the Lightning Process to treat CFS. Study participants included nine young people
who had participated in the Lightning Process and three parents. It was hoped that by
deepening our understanding of helpful and less helpful treatment components for young
people with CFS, we would be in a better position to maximize the effectiveness of future
therapies for this disabling condition.
The young people interviewed in this study reported mostly positive experiences of
the Lightning Process, but both good and bad experiences were explored in depth as they
were both considered equally important for the research question. Two participants
reported being dissatisfied with the treatment and did not experience any improvement in
their CFS, while the remaining seven reported that they were very satisfied with the
treatment and that they were either much or very much better, as illustrated in the case
history of YP7 who was able to resume full-time work after the intervention despite having
suffered from CFS for 2 years. The majority had high hopes and expectations before they
did the Lightning Process after reading and hearing about other success stories, but
positive expectations did not appear critical to engage the young people in the treatment,
as several reported to have had no expectations or even mixed feelings before starting.
Their experiences with the treatment itself varied from very good, to not so good with
some finding the experience confusing and in conflict with advice received from previous
therapists and health care providers. The Lightning Process was described as involving
hard work, although those who had suffered from CFS the longest tended to view it as
harder than those who had not suffered as long. The experience of effectiveness split the
young persons in roughly three categories; instant healing, gradual improvement, and no
improvement at all.
Particular helpful aspects seemed to be the theoretical rationale that was given, the
practical exercises, and the technique they learned (‘the process’). Whilst the theoretical
aspects appeared most important for treatment engagement and commitment, the
behavioural aspects appeared most important for symptom improvement and recovery.
This could thus be an avenue for future studies to explore. Aspects that were found to be
less helpful were the intensity and short duration of the treatment with little follow-up
support, the secrecy surrounding it, and the feeling of being blamed if the treatment did
not work. The first case story (YP1) provides an illuminating description of the process
leading up to the feeling of guilt and blame, with a central theme being the participants’
own responsibility for recovery. Participants also felt that there was some dishonesty in
claims that the Lightning Process has a 100% success rate. However, we should note that
Phil Parker’s website now states that ‘81.3% of clients report that they no longer have the
issues they came with by day 3 of the LP course’ (Parker, 2011). The parents reported only
Lightning Process for CFS/ME 15
positive experiences with the Lightning Process, as all of their children found the
treatment helpful.
We observed some similarities between our findings and those from other studies,
which will now be considered. The finding that young people responded particularly well
to the practical aspects of the Lightning Process was consistent with findings from a recent
qualitative study of CBT for young people with CFS, in which the behavioural component
(for example graded activity and goal setting) appeared to be favoured over the cognitive
component (Dennison et al., 2010). We might also speculate that a directive approach
involving a concrete process to be followed and practised, may be both containing and
empowering for people who have lived for a long time with a frustrating and debilitating
condition.
Some participants highlighted the development of a shared theoretical rationale for
CFS as a helpful aspect of the Lightning Process, whilst also expressing frustration at those
who did not fully understand it. Acceptance of a shared model to understand symptoms
has been shown to predict response to other psychological interventions for CFS as well
(Bentall, Powell, Nye, & Edwards, 2002). The joint acceptance of a physiological rationale
by the client and therapist may also mean that the client is put in a position where they may
simultaneously feel that their symptoms are taken seriously and that the process is worth
committing to. In this way clients may fully engage in the change process without
distraction from having to defend symptoms or seek alternative explanations for their
condition.
A possible sick role has been suggested as a contributory maintaining factor for CFS in
some people as illustrated in the case history of YP7, and indeed secondary gains from CFS
have been shown to reduce the likelihood of improvement following psychological
therapy (Bentall et al., 2002). We may therefore conclude that a process in which clients
choose to put themselves in the role of their own ‘coach’, providing encouragement to
themselves, may counteract the ‘sick role’ identity. This may be done by moving them
towards viewing themselves as being active and positive in how they manage their illness.
Indeed, participants commented on the helpfulness of having an active choice in how to
respond to distress so as to assist recovery.
The current finding that some participants reported an unhelpful aspect of the
Lightning Process as a sense of being blamed if the process was unsuccessful, was in line
with previous qualitative research in CFS patients showing that feeling blamed or
dismissed led to withdrawal or disengagement from professionals (Larun & Malterud,
2007). Perhaps the difference between the Lightning Process and CBT highlighted in the
second case story (YP7) could help shed some light on this. The more extreme position
taken by the Lightning Process in denying the limitations of the illness could produce
divergent results in various people. Some may find this approach liberating and
therapeutic, whilst others may not respond to this approach but rather be left feeling
guilty and blamed. This could be pursued further in future studies to investigate if different
patients benefit from different approaches. If they do, matching the right patient with the
right treatment could help improve treatment outcomes.
It is important to bear in mind the various strengths and limitations of the current
study. Strengths include the systematic and rigorous methodology of the thematic
analysis, which also includes an idiographic approach to give a deeper and broader
perspective. Limitations include the exclusive reliance on retrospective report, and also
possible selection bias in terms of the opportunistic sampling strategy used. The
recruitment approach using a website for young people with CFS was selected for reasons
of practicality, as all authors are independent of practitioners who carry out the Lightning
16 Silje Endresen Reme et al.
Process. The advertisement inviting participation would be seen only by those accessing
the website, and could hence represent a selection bias. It may be speculated that the
recruitment process favours those who have benefited less from the intervention; as those
who had experienced recovery from their symptoms might be less likely to continue to
access the CFS website. This would mean that the findings might under-represent the
positive benefits of the Lightning Process. On the other hand, it may be that those
participants with greater on-going fatigue might have less energy to volunteer to
participate in a research study, or that those participants who benefited and greatly
improved from the intervention will be more likely to share their positive experiences as it
could be helpful to others. As both scenarios are probable, we do not consider the risk of
selection bias to be a major threat to the study validity.
The use of qualitative telephone interviewing involves both advantages and
disadvantages (Novick, 2008). Advantages may include participants feeling more relaxed
and able to disclose sensitive information over the telephone, as there is a feeling of
greater anonymity and they are speaking from their own environment. Furthermore,
telephone interviewing has the practical advantages of being able to include participants
who do not live locally or who might feel unable to attend in person due to fatigue.
Disadvantages may include a lack of visual social cues or visual signs of fatigue, and face-to-
face rapport. However, overall, research has suggested face-to-face and telephone
qualitative interviews yield similar results (Sturges & Hanrahan, 2004).
It is important to consider the specific context in which the current study was
conducted. A relatively large participation fee is charged for the Lightning Process, which
could influence the participants’ perceptions of the intervention, most likely towards a
positive bias. Furthermore, participants of the Lightning Process are usually highly
selected on criteria involving ‘readiness for recovery’, which not only select those with
the best prognosis for recovery but also somewhat limit the generalizability of the current
results. Statistical representation of the population was, however, not the goal of this
study. We sought instead a detailed description of the participants’ experiences to shed
light on the nature of the phenomenon in question – namely, the participants’
experiences with the Lightning Process, and the transferability of these insights to refine
and further develop interventions for this particular group of patients.
In summary, the majority of the young people participating in this study reported
largely positive experiences of the Lightning Process, despite all having experienced
unsuccessful treatments for CFS in the past and typically having lived with CFS for a
number of years with significant disability. In terms of future directions, we understand
that there is a randomized controlled trial underway to evaluate the efficacy of the
Lightning Process in treating CFS in teenagers. In terms of the broader implications of
this study for treating CFS in young people, we noted substantial overlap between the
helpful treatment components in the Lightning Process, and in other psychological
interventions for CFS – for example developing an acceptable shared understanding of
symptoms, and focus on practical exercises. Conversely, and perhaps unsurprisingly, the
experience of feeling blamed was found to be unhelpful in both this study and for
patients with CFS more widely. It will be important to consider these helpful and
unhelpful treatment components, as we continue to refine our clinical interventions for
CFS in this age group.
Lightning Process for CFS/ME 17
Acknowledgements
We would like to thank the young people and parents who very kindly shared their
experiences for this study. We would also like to thank the Association of Young People with
ME (AYME) for their support in recruiting participants for this study.
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Received 4 January 2012; revised version received 24 July 2012