Can Couples Find a Silver Lining Amid the Dark Cloud of ME/CFS

Abstract

Sustaining a long-term committed couple relationship is often challenging. When the dark cloud of chronic illness descends upon a couple, remaining together can become even more daunting—or so it is commonly assumed. Current literature is highlighting a silver lining phenomenon known as positive reframing or benefit finding as a reaction to the dark cloud of chronic illness. These studies focus upon the experience of the individual, yet little research has been conducted into the experience of couple relationships. A study was conducted to research whether some couples experience an unexpected positivity when one partner has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a debilitating and mysterious disease of the immune, endocrine, and central nervous systems. Positivity was measured by the Silver Lining Questionnaire for Couples and explored further in an interview. Understanding how some couples experience this phenomenon can build resilient relationships and reduce the severity of symptoms for sufferers.

Keywords

chronic fatigue syndrome myalgic encephalomyelitis couple relationships positivity benefit finding spirituality

When chronic illness enters the life of the sufferer, its impact can be far reaching. Not only must sufferers live with the distress of their symptoms, they must adjust to unwelcome and unexpected lifestyle changes. For those sufferers in marriages and partnerships, the arrival of a chronic disease often exacerbates unresolved issues in their relationship and brings them into contact with widely held societal pessimism regarding the impact of illness upon couple relationships. When sharing information about lifestyle adjustment to chronic illness, family, friends, health professionals, and illness support groups can unintentionally leave the couple feeling that there is little hope for the survival of their relationship.

On the other hand, the couple may also hear about a “superstar” couple whose description may tend toward the superhuman and epic. These accounts may provide a refreshing relief for struggling patients and couples, but seem so unreachable that they leave the average couple with little hope and confidence. These couples may believe they do not measure up to the exceptional ones and are more similar to the pathologically distressed couples. Rolland states that these contrasting experiences leave couples with a view of healthy adaptation that is “rarely achieved and perpetuates self-judgments of deficient performance, infused with blame, shame, and guilt. The inspirations of the exceptional and the warning signs of dysfunction need to be grounded by descriptions of typical experiences” (Walsh, 2012, p 454).

In the light of the above-mentioned experiences, couples managing the distress of living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) were studied. The central hypothesis of this study was that there is a silver lining located within the stormy experience of couple relationships with CFS/ME. It also investigated the presence of common strategies used by these couples that can assist other marriages and partnerships. To this end, the Silver Lining Questionnaire (SLQ) that has already been utilized for similar purposes was selected and adapted for the present purpose (Sodergren & Hyland, 2000).

Literature Review

What Is ME/CFS?

ME/CFS is a severe and debilitating illness that has no known cure, limited treatment, and little understanding among the medical and general community. The illness was first labeled as Myalgic Encephalomyelitis by the World Health Organization in 1969 and renamed Chronic Fatigue Syndrome in 1994. Today, the two terms are used (Carruthers et al., 2003). ME/CFS is a significant health problem that affects approximately 0.23–2.6% of the adult population depending upon which definition is used (White et al., 2011).

Symptoms include fatigue, pain, sleep disturbance, muscle aches, postexertional malaise, and various neurological symptoms such as hypersensitivity to noise, short-term memory impairment, and impairment of information processing. Sufferers feel worse after exercise and usually require 24 hr or longer to recover. Diagnosis requires more than a 50% reduction of a patient’s previous activity level (McCleary, 2011). ME/CFS typically requires a lifetime of adaptation to significant physical, social, psychological, and environmental changes in a manner similar to other chronic diseases such as multiple sclerosis, lupus, rheumatoid arthritis, and heart disease (Nichols & Hunt, 2011). Medical treatments such as antidepressants sometimes help increase quality of sleep and relieve muscular pain. Counseling can assist sufferers and their families to learn stress management techniques (Lattie et al., 2013).

Impact Upon Couples

When ME/CFS strikes, both individual sufferers and their partners experience significant distress. A combination of no cure, delayed diagnosis, limited treatment, ongoing symptoms, lack of visible symptoms, medical skepticism, and uncertainty regarding diagnosis and prognosis is a challenge for any relationship. Social isolation and financial pressures follow from a decrease or withdrawal from employment. Major changes in roles impact the couple relationship as the well partner juggles full-time bread winning, household management, and increased care for any children. Pleasurable activities such as hobbies and sport are reduced. Sexual desire for the sufferer and at times the healthy partner is disrupted (Blazquez et al., 2008).

While there is limited research into the rates of divorce among couples with chronic illness, anecdotal reports indicate a higher than average rate of relationship breakdown. Typically, the arrival of a chronic disease intensifies unresolved couple issues and introduces new stresses (Sperry, 2012). One poll among fibromyalgia sufferers found that more than a quarter of respondents said that their illness ended their relationship, and half of the respondents indicated that the illness caused more marital strain than marital strengthening (Dellwoo, 2009). These results are consistent with statistics into other chronic illness groups. It is estimated that 75% of marriages with a chronically unwell partner end in divorce compared to approximately 50% of marriages in general (Nakazawa, 2009).

A Couple’s Approach to Managing ME/CFS

The literature regarding the management of ME/CFS mainly adopts an individual approach that focuses upon the sufferer, with comparatively little emphasis on the couple relationship. This pattern is consistent with the medical community’s approach to other chronic illnesses despite the well documented evidence that positive spouse support reduces symptom severity in sufferers. Susan MacDaniel from the University of Rochester states, “The medical community often neglects to help couples metabolize the toll that chronic illness takes on a marriage, even though we know that how well a husband and wife cope together has a direct impact on how well a patient will heal” (Nakazawa, 2009, p. 7). The few existing studies about ME/CFS and couple relationships suggest a stronger couple relationship reduces psychological distress in both partners which has the flow-on effect of lessening physical symptoms (Ax, Gregg, & Jones, 2002; Goodwin, 1997).

Exploring an Unexpected Outcome—Positivity

While illness is commonly viewed as a purely negative experience, the literature regarding coping with chronic illness mentions a serendipitous phenomenon called positive reframing or benefit finding as a response to chronic illness (Katz, Flasher, Cacciapaglia, & Nelson, 2001). In other words, there can be a silver lining within the dark cloud of chronic illness. Chronic illnesses such as stroke, lupus, respiratory failure, and cancer can yield an unexpected silver lining for some individuals despite the dark cloud of profound disruption to their normal life (Gillen, 2005; McBride, Dunwoody, Lowe-Strong, & Kennedy, 2008). Some reports of positivity in illness were reported in about 95% of patients with respiratory complaints such as asthma and chronic respiratory disease (Sodergren, Hyland, Crawford, & Partridge, 2004).

While positivity is highly varied among sufferers of ME/CFS, the experience of positivity is more common than typically assumed. Positivity is found to decrease mental fatigue but not physical fatigue and is more evident in those with spiritual/religious beliefs, openness to new experiences, and extraversion (Hyland, Sodergren, & Lewith, 2006). Participants report personal development through redefinition of priorities, self-improvement, greater appreciation of life, deepening spirituality, and an opportunity to become more like their ideal self (Sodergren & Hyland, 2000; Sodergren, Hyland, Singh, & Sewell, 2002). Increased happiness during or after their illness can occur due to a greater awareness of being loved by their family.

Limited mention is made in the literature regarding the presence of benefit finding among couples with ME/CFS. Benefits cited were the opportunity to develop a more resilient relationship and increased time to be together, which correlated with their reason for commencing the couple relationship (Ax et al., 2002). Christian faith and strong marital friendship have been mentioned as strengthening factors for relationships (Goodwin, 2000).

Method

Given the emotional and physical benefits to sufferers of various chronic illnesses when experiencing a supportive couple relationship, a study was conducted to determine whether positivity is experienced among ME/CFS sufferers. If so, the study aimed to identify those strategies that strengthened their couple relationship.

The present study had two stages. The Silver Lining Questionnaire for Couples (SLQFC) was administered and selected respondents were contacted for a semistructured interview.

SLQFC

The SLQ is a published questionnaire developed to measure the phenomenon of benefit finding among individual sufferers of chronic illness. The SLQFC is an adapted version of the SLQ. Permission to adapt was granted by Hyland to focus specifically upon how chronic illness influences the couple relationship. Various scales that measure satisfaction within the marital relationship were considered. The SLQ was selected because it measured positivity in chronic illness, had been used among individual sufferers of ME/CFS, and could be adapted from an individual focus to a couple relationship focus (Hyland et al., 2006). The SLQFC can be obtained from the first author.

Minimal changes were made to the SLQ items. The main adaptations involved reframing the questions from an individual focus about various aspects of life to a couple focus primarily about their relationship. This research project has rearranged an existing questionnaire and adapted it to a new purpose. The psychometric properties of this slightly adapted scale have yet to be determined, but some confidence can be gained from the preliminary findings of Sodergren, Hyland, Singh, and Sewell (2002) claiming good internal consistency for the original SLQ (α = .93) and test–retest reliability (r = .90; McBride et al., 2008).

SLQFC recruitment

Canvassing for participants was conducted through a collection of professional agencies, medical practices, and personal contacts. The criteria for participation were that participants were in a long-term committed couple relationship such as marriage or defacto partnership, both partners completed the questionnaire, one partner had ME/CFS, and their diagnosis had been made by a medical practitioner. At this stage, there was no reference to positivity, but a general cohort was sought. Questionnaires were either e-mailed or sent via post depending upon the preference of the participants.

SLQFC scoring

The SLQFC contains a Likert-type scale that gauges positivity to adversity responses according to strongly agree (2), agree (1), unsure (0), disagree (−1), and strongly disagree (−2).

SLQFC analysis

Classifying the data involved allocating the 38 items according to various headings or aspects of positivity within illness. The construction of the headings was based on SLQ headings, resiliency literature, Gottman’s couple relationship research, and analysis by the authors (Gottman & Silver, 1999). The SLQFC data were classified using 10 headings in order to maintain similarity to the SLQ analysis. Changes were made to several of the SLQ headings although 6 of the 10 SLQ headings were used with only minor adaptations.

While there is conceptual overlap between the SLQFC categories, each category aims to gather information about the impact of the illness upon the quality of the couple relationship. The SLQFC categories are increased appreciation for couple relationship, greater fondness and admiration for each other, self-improvement, discovering new couple relationship strengths, greater couple resilience, reappraisal of relationship, spiritual gains, confrontation of current concerns, more sensitivity to emotions of self and partner, and improved relationships with other people.

Semistructured Interview

The second stage of the study involved conducting semistructured interviews. The key selection criteria were positivity about the influence of ME/CFS upon their couple relationship as demonstrated in the SLQFC, together with accessibility since some participants were too unwell to be interviewed.

Interviews ranged in duration from one to one and a quarter hours, with each couple choosing to be interviewed together. Two interviews were conducted in the participants’ homes, two at the researcher’s premises, and one via telephone as the participants lived interstate. All interviews were audiorecorded with the permission of the participants.

After beginning with questions about illness history and the impact upon both sufferer and partner, the interview then proceeded to include the following exploration: What has ME/CFS meant to your marriage? How have you maintained your marriage amid the challenges of the illness? What, if any, new qualities or surprises have you noticed in each other since the illness began? How do you cope as a couple with any seemingly unresolvable problems created by the illness? How have you as a couple tried to maintain a lighter side of life despite the challenges of the illness?

Analysis of interview data

Each interview was transcribed verbatim and analyzed for couple statements about the influence of the illness upon their relationship. Statements were drawn from each of the five interviews and included reflections from both sufferer and partner. The research focus was upon statements made about the relationships, with less attention given to individual reflections or experiences with other relationships, such as their children. These excerpts from the transcripts were categorized according to the most appropriate SLQFC heading.

In summary, while some adaptations have been made to the SLQ, the SLQFC maintained the same structure and emphasis upon positivity within the context of chronic illness. The SLQFC aimed to locate couples experiencing positivity in their relationship, and semistructured interviews were conducted to identify common strategies that yielded this benefit-finding phenomenon.

Results and Discussion

Analysis of this data provided an understanding of the strengthening factors in couple relationships where one partner has ME/CFS.

Participants

In the study, 15 of the 19 married couples approached returned their SLQFC (79% return rate). Male sufferers comprised 60% of respondents in this study, whereas they account for only 22% of sufferers of ME/CFS (New study finds high prevalence of chronic fatigue syndrome, 2004). Existing studies typically have focused upon the experience of the female sufferer or have a higher proportion of female participants, for example, Blazquez et al. (2008).

Is There Any Silver Lining for Couples With ME/CFS?

Positivity was measured for each couple who completed the SLQFC. Nine of the 15 couples (60%) indicated positivity since their scores were higher than zero. Each couple’s score was calculated by combining the responses of the sufferer and partner from the Likert-type scale for each of the 38 items. The total possible score for each couple was ±152. The actual combined scores of couples ranged between +102 and −95. The actual average score of all the couples was +13.3 of a possible +152 points, indicating that on average couples did experience some positive influence of the illness upon their couple relationships. The possible score for each individual was ±76. Sufferers’ actual scores ranged between +46 and −61. Partners’ actual scores ranged between +58 and −37.

The scores were consistent with the existing literature that indicates considerable distress experienced by couples with ME/CFS. The scores are also consistent with the benefit-finding literature that indicates the presence of some positive outcomes from chronic illness.

How Did Couples Obtain This Silver Lining?

An analysis of the SLQFC was then considered and this report analyses results from the five couples selected for interview. The average SLQFC gains indicated by the five couples were totaled to identify which factors were most significant in strengthening their relationship. The possible scores of each headings was ±2 for each item, with actual scores between +0.3 and +1.00. Broadly speaking, “spiritual gains” was the heading that scored the highest result. The “spiritual gain” factor stood out as most significant, while the “improved relationships with other people” factor scored the lowest result.

The qualitative data from the five interviews were interpreted according to the 10 headings based on content analysis of the SLQFC. The strengthening factors in order of importance are as follows.

Spiritual gains

The highest scoring key to positivity identified within the SLQFC was a deepening of spirituality. Each couple expressed their belief within a Christian faith-based framework. These experiences of the SLQFC participants fit with the couples’ literature regarding the significance of spirituality in helping individuals and their partners contend with their suffering. Their faith also helped them to create a shared meaning about the illness which led to a deeper level of marital intimacy.

Male Sufferer: “We really involve God in our marriage and ask Him to remind us of the things that we need so we can have the best marriage possible … We look to Jesus as our model of persevering in suffering.”

Greater couple resilience

Each couple expressed an awareness of their increased shared strength and determination to meet current and future challenges. They cited various strategies that helped them to build the resilience of their marriage such as laughing together, being committed to talking as friends not arguing about issues, and drawing inspiration from their wedding vows.

Greater fondness and admiration for each other

Each couple spoke of developing increased affection, respect, and positive regard for one another because of the challenges of ME/CFS. The illness led to the discovery of new and deepening of known positive attributes in each other.

Male Spouse: “In the midst of the struggles with the symptoms and the medical appointments and the drugs and the regime and the lack of mobility and the pain, she has a really acute sense of other people that helps keep things in balance … this part of her I have always appreciated and appreciate even more.”

Increased appreciation for couple relationship

Each couple interviewed expressed a greater appreciation and gratitude for their marriage because of the distress created by ME/CFS. One reason for this increased appreciation was that some couples felt that they needed each other’s combined strength to endure the hardships.

Female Spouse: “We simply needed each other to get through.”

Reappraisal of relationship

Couples described how the impact of the illness led them to reexamine their relationship.

Male Spouse: “My commitment to her is literally through illness and health …. she has stuck by me through my ups and downs and it’s no real burden to stick with her.”

Discovering new couple relationship strengths

Couples frequently reported new strengths that had developed because of the demands of the illness.

Female Spouse said: “After I helped you work through college, we kept working as a team. You share more housework; we have a routine going where we help each other.”

More sensitivity to emotions of self and partner

Couples frequently commented that they are now more in touch with their spouse’s emotions because of their combined battle with the ME/CFS.

Female Spouse: “He was so driven and could work 80 hours/week. I hardly ever saw him. One nice thing about the CFS is that he has changed from being so task focused to more people focused, including me.”

Confrontation of current concerns

Couples were frequently proactive about addressing problems within their marriage created by the ME/CFS in order to maximize their quality of life. If mobility was a problem, it was time to buy a motorized scooter. If fatigue was limiting sexual intimacy, it was time to reprioritize energy expended on other activities to save energy for making love. While the ME/CFS was an ongoing perpetual problem largely beyond their control, the couples were proactive in controlling what they could control.

Male Sufferer: “We want to deal with challenges then and there so they don’t become an issue.”

Self-improvement

Each couple identified varying aspects of personal growth, such as becoming less self-focused, more confident in making decisions, being more patient and compassionate for others. Self-improvement benefited not only the individual but also the marriage. For example, one male partner assumed more decision-making responsibilities for their marriage when his wife became ill. He became her advocate and protector, and developed increased confidence in his ability to assertively communicate.

Improved relationships with other people

This category contained the greatest variation in participant experiences. Most couples described increased social isolation and gave examples of friends and family not understanding their plight. Those who reported positivity in this category mainly referred to family supports, such as parents or adult children.

Other results

Each couple spoke with energy and pleasure about joint hobbies and entertainment. Sometimes these activities had continued from their pre-ME/CFS life and were adjusted to accommodate the health constraints, such as sitting in the car by the beach as opposed to walking along the beach, and holidaying via cruises as opposed to international travel tours. Couples also spoke of developing new hobbies that could be enjoyed as a couple. One couple had begun collecting memorabilia from the famous 1960’s pop group “The Beatles.” The sufferer from another couple learned to play his teenager’s video games, which was a source of entertainment and laughter for them as a couple and their children.

While simply acquiring mutually enjoyable hobbies alone does not keep couples together, such joint activities do enable couples to enjoy each other’s company and build their friendships. This ability to maintain the couple friendship is the most important ingredient in strengthening marriages (Gottman & Silver, 1999). Each interviewed couple in the present study demonstrated a liking for each other and an ability to find enjoyment in each other’s company. This tendency indicated their strong marital friendships.

Limitations of the Study

While the present study contributes to a greater understanding of coping strategies for couples managing ME/CFS, it does contain several limitations. First, limited critique of the original SLQ notes its contribution to measuring adversarial growth in sufferers of chronic illness and recommends further exploration of its psychometric properties especially regarding its factor structure (McBride et al., 2008). The SLQFC has not been tested in relation to its psychometric properties. Addressing concerns around the validity and reliability of these two instruments was beyond the scope of the present study.

Second, each heading of the SLQFC contained varying numbers of questions. Ideally, each scale would have contained an equal number of questions. Third, only one SLQFC question related to “spiritual gains” in order to allow more space to reflect upon the couple relationship. While it would have been preferable to have included more than one question on spirituality, the semistructured interviews did reinforce the significance of spirituality to couple’s positivity. Fourth, the contribution of spirituality other than Christianity was not examined. Future research among a wider pool of participants would provide opportunity to address these limitations.

Implications of Study

This study can assist sufferers, their partners, health professionals, and the wider community since it disputes the prevailing negative stereotype surrounding the impact of chronic illness upon couples. Instead, it provides some reassurance and hope that couple relationships can survive and strengthen amid chronic illness.

The study identifies specific key factors that have strengthened the interviewed couple relationships. Implementing these strategies may assist other couples and their health professionals to manage problems within the marriage or partnership. The study confirms that ME/CFS impacts not only the sufferer but also the partner. This illness is not a solo but a shared experience. Since partner support reduces severity of symptoms, an important but rarely considered avenue for treatment is to assist the sufferer with their couple relationship.

The study suggests the importance of adopting a multifaceted approach to coping. Couples would benefit by prioritizing their relationship, spirituality, and enjoyable leisure activities among their regime of accessing medical resources and services. The study supports the existing literature that ME/CFS sufferers receive limited external social supports. Increased support from health professionals may enable friends and families to better understand the nature of the illness and provide care.

The results of this study suggest overlap with experiences of other chronic illnesses, such as cancer, rheumatoid arthritis, and multiple sclerosis. Positivity can emerge for couple relationships contending with ME/CFS. In light of these findings, increased psychoeducation is recommended for sufferers and their partners, psychological and medical professionals, and wider community services such as ME/CFS Societies and support groups. In light of the significance of Christian spirituality that was expressed by the interviewed couples, avenues for greater support by churches could also be helpful to sufferers and their partners.

Various possibilities for further investigation were not addressed in view of the limited size of this study. The existing data could also be analyzed for all couples who indicated positivity on the SLQFC. Further analysis could also compare strengthening factors identified by sufferers and partners according to gender.

Further studies among a larger pool of participants could explore whether this phenomenon of spiritual gains can be generalized among faith communities other than Christian spirituality. Finally, if there is any correlation between positivity scores and the level of recovery, research may identify the presence of specific strategies that are more effective at varying stages of recovery.

Conclusion

The present study contributes to four little explored areas of research into living with ME/CFS. An existing measurement tool has been adapted from an individual to a couple focus. The positive couple experiences of sufferers and their spouses have been identified. The role of spirituality in strengthening couple relationships has been noted. Relationships where the sufferers are predominately male have been considered.

The keys to strengthening couple relationships with ME/CFS form an important area of research in order to understand how best to manage this chronic illness. The significant challenges associated with living with ME/CFS can erode the quality of the couple relationship. However, stable and supportive couple relationships may decrease the severity of symptoms and provide an important source of support for sufferers. The five couples who completed the SLQFC and interview were not “superstars” but everyday people who described how together they endured their mutual distress. Their experiences of positivity in their marriages may provide an important source of information for other couples who seek to find a silver lining amid the dark cloud of chronic illness.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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