Adults With ME/CFS Report Surprisingly High Rates Of Youth Symptoms: A Qualitative Analysis Of Patient Blog Commentary Part 2

Why we will be tired? How can we solve the fatigue problems?

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3.2.8. Isolation/poor social supports (n = 4)

Several participants spoke of the impact that ME/CFS had on their ability to foster and maintain relationships in childhood and beyond. Similarly, others mentioned poor support or understanding of their illness from others as a factor leading to increased feelings of isolation. About the burden of symptom management and functional limitations, one participant noted “[I] Remember being so tired & napped even when my siblings & peers were playing,” while another mentioned “Being misunderstood is (I believe) extremely isolating – which just makes everything so much more difficult.” One participant  described the intermingling of illness experiences as a factor contributing to their daughter’s isolation, stating, “It has been very difficult for her in so many ways – education, isolation, friendships, and anxiety.”

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3.2.9. Coping mechanisms (n = 2)

Only a couple of participants provided comments in alignment with this theme. These comments included accounts of how lack of diagnostic clarity triggers feelings of confusion and lack of hope for those affected by this illness. As a result, the ability to implement proper coping mechanisms, either regarding mental or physical health, is necessary for those living with ME/CFS. Participant comments  belonging to this theme described several coping mechanisms, such as one mother whose daughter is “having therapy at the moment, aged 25, to help her come to terms with the limitations imposed on her  life by this horrible disease.” Another described the role of enjoyed hobbies in creating a sense of stability, stating “My safe & comforting haven, spiritual, & most constant companion in life–art, music, &  photography.”

4. Discussion 

Roughly, 43% of survey participants reported developing ME/CFS before age 18. It was surprising that such a high percentage of adult patients with ME/CFS would retrospectively trace symptom experiences to their youth. However, this finding aligns with previous research finding a high percentage of those with ME/CFS have the onset of symptoms during adolescence, specifically for ages 10 to 19 [21]. It is possible these findings were influenced by selection bias as the survey may have been of particular interest to those with this childhood experience. Still, with a reported 1.5 million cases of ME/CFS [2], it is also possible that a far higher percentage of adults developed symptoms earlier than had once been thought.

Stomach aches are one of several symptoms that commonly occur in children but have a scarcer presence in adults [22]. It is not surprising that gut problems were a frequently endorsed survey event for those ill with ME/CFS in childhood. Similarly, headaches, sleep disturbance, and cognitive difficulties are among the most reported pediatric ME/CFS symptoms [23], and both headaches and difficulty going to sleep were frequently endorsed in the current survey. In contrast, survey items relating to cognitive difficulties (e.g., difficulty paying attention, mentally tired after little effort) were among the least endorsed survey items despite evidence of being a hallmark symptom in both pediatric and adult populations [1].

Qualitative analysis of blog commentaries revealed numerous themes related to illness non-recovery and patient lived experiences throughout the lifespan. Several of these themes detailed the systemic nature of ME/CFS and included descriptions of symptom profiles or onset patterns, as well as physiological etiologies of ME/CFS. For example, it was not surprising that many patients mentioned a family history of ME/CFS or related illnesses, as several studies have indicated a significantly increased risk of ME/CFS among close relatives, thus suggesting a heritable component to predisposition [24, 25]. For example, work by Albright and colleagues [24] found a significantly higher association for diagnosis of ME/CFS for first-, second-, and third-degree relatives of those with ME/CFS, which aligns with findings from the present analysis in which participants reported family members such as siblings or children having or being suspected of having ME/CFS as well. Several other participants described previously healthy and active childhoods followed by a triggering event or time of definite onset. A smaller subset of these patients mentioned relapsing and remitting patterns,  where they remember an event or period as a child when they became ill only to remain symptom-free for years, even decades before their ME/CFS returned. While relapsing or remitting patterns are common for patients with ME/CFS [26], it is interesting that multiple participants reported experiencing remissions for many years before symptoms returned. Current literature regarding ME/CFS typically captures illness onset according to several identified patterns (i.e., acute or gradual), yet formal labeling of ME/CFS onset patterns has yet to be accepted [27]. Unfortunately, only a few studies have examined changes in symptom presentation over multiple years [28].

Subsequent themes included descriptions of functional limitations and the negative physical and psychological consequences. Namely, many participants reported feelings of being misunderstood by family members, healthcare providers, and teachers, which not only increased feelings of isolation but delayed proper diagnosis and validation of illness experiences until much later in life. Experiences of isolation due to misunderstanding and physical limitations are frequently cited in the literature as common experiences for patients with ME/CFS [29]. For children, the ongoing and often unclear process of medical diagnosis coupled with social isolation and decreased exposure to educational and developmental opportunities further increases the risk of developing anxiety and depression [30, 31], yet another theme presented in the current study. Anxiety and depression are among the most cited comorbidities of ME/CFS, primarily due to the burden imposed by illness experiences [1]. Delayed confirmation of diagnosis has also been associated with poorer treatment outcomes for children who are affected [32]. Similarly, it is not unusual that poor school functioning was a theme uncovered in the present study, as excessive school absenteeism and cognitive impairment have been cited as hallmarks of pediatric ME/CFS, both of which exacerbate social isolation and decrease overall quality of life [33]. Together,  these themes align with our understanding of how the unique burdens of ME/CFS likely worsened illness outcomes and participants’ ability to cope later in life. These findings highlight how understanding potential illness indicators in youth can lead to faster identification and intervention of ME/CFS in adulthood, potentially limiting the further burden of the illness.

Several participants included comments that suggested positive methods of coping or ways of managing their illness. Among the most prominent of these was the sharing of resources within the blog community. Because ME/CFS is stigmatized and misunderstood, it is not uncommon for patients to be drawn to the internet. Individuals with chronic health conditions often seek online communication as a way to build community, share resources, and receive validation of illness experiences [34]. Moreover, the use of the internet among adolescents has only increased over the years, leading many young people with ME/CFS to engage in online communities and forums as a way of establishing social connections and seeking information regarding their illness [35]. Other methods of coping mentioned by participants included descriptions of hobbies that they could enjoy within functional capacity, as well as therapy as a means of coping with stress, ongoing isolation, and difficulty managing symptoms. While coping mechanisms fall into several categories depending on the type of illness stressor, engaging in enjoyed activities as a means of distraction as well as learning cognitive restructuring techniques are methods children and adolescents often utilize when coping with chronic illness [35]. Social support, understanding of illness etiology, and the ability to engage in preferred activities within functional limitations are factors that likely increase positive illness outcomes.

4.1. Limitations

There were several limitations to the current study. Our study did not have demographic information such as gender or place of residence. Factors such as these may have influenced illness experiences and outcomes, such as how location may or may not hinder one’s access to treatment and resources. An additional limitation included potential sampling biases and the risk of inaccurate self-report data. Because this study included anonymous disclosure of illness diagnosis and experiences, details regarding illness treatment, diagnosis, and outcomes could not be verified. Additionally, due to the anonymous and online nature of responses included in the current study, it is possible that some responses were inaccurate or portrayed as more extreme or serious. Some researchers argue that blogs promote a diary-style form of self-report which can encourage spontaneous and candid responses which could inhibit the validity of responses [36]. Similarly, the potential for recall bias due to adults reporting on experiences in childhood may be more prevalent in a diary-style of self-report, especially because commonly reported pediatric triggers of ME/CFS can be typical childhood experiences. However, reported triggers in this study reflect previous findings regarding pediatric triggers of ME/CFS, such as significant physical or emotional trauma and poor mental health, thus providing a stronger basis for validity in their responses [37]. Additionally, as this survey was not designed or administered by the authors of this study, follow-up or clarifying questioning was unable to be conducted, which potentially limited the depth and clarity of the analysis. One big drawback of this method is the authors were unable to confirm whether reported childhood triggers were directly related to ME/CFS diagnosis or if they were common or random childhood occurrences and diagnosis occurred years later due to additional causes. Future research should include more in-depth questions on illness trajectory to better explore connections between childhood symptoms or triggers and eventual diagnosis of ME/CFS. The most serious limitation is that the blog described youth experiences with ME/CFS and probably thus recruited a sample that had more interest and possibly experiences with the content of this online blog.

4.2. Recommendations

The present study has several implications for future investigation. It is important that researchers and clinicians better understand patient-reported illness and family genetic history, patterns of symptom onset, and environmental exposure throughout the lifespan of patients with ME/CFS. Representation of these issues in the literature will bolster our understanding of possible illness triggers or predispositions to ME/CFS in childhood and adolescence, as revealed in the present study. It will also aid in legitimizing the lived experiences of patients who do not believe in their illness. There continues to be a lack of representation and knowledge of this illness despite its prevalence [38]. According to Pierre Bourdieu’s analysis of symbolic violence, Torrent [38] chronicles how symbolic mechanisms of violence (i.e., non-recognition, institutionalized un-care, condescension, authorized imposition of illegitimate verdicts, delegitimization, disintegration, imposition of discourse, euphemization, silencing, invisibilization, isolation, uncommunication, and self-blaming) combine with structural and societal norms to ultimately delegitimize this vulnerable population. Future researchers are encouraged to investigate the social implications of ME/CFS, and how various groups of power influence these societal norms (i.e., lack of state government funding, favoring of the medical paradigm) that may be harming patient outcomes and leading to decreased financial and occupational opportunities for adults with ME/CFS.

5. Conclusion

The current study provides an example of a collaborative approach to engaging in research on ME/CFS, where research groups take the catalyst or inspiration of their work from patient concerns. Approaches of this nature may elevate patient voices and uncover issues that impact those who are most vulnerable [39].

Acknowledgments

The authors would like to thank Cort Johnson for his contributions to the present study by creating a  safe online environment for individuals with ME/CFS through his Health Rising Blog and for simultaneously creating the Childhood Poll.

Funding 

The current study was not funded.

Ethical approval 

The authors' Institutional Review Board was consulted via email regarding informed consent and study procedures. Due to the public nature of the blog commentary and poll, it was deemed unnecessary for review.

Informed consent 

Due to the public nature of the blog commentary and poll, the author's Institutional Review Board deemed informed consent unnecessary.

Conflict of interest 

The authors have no conflict of interest to report.

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【Contact】Email: george.deng@wecistanche.com / WhatsApp:008613632399501/Wechat:13632399501