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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. 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