Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious chronic illness that affects the quality of life of patients, caregivers, and family members. People with ME/ CFS experience three primary symptoms: a reduction in pre-illness level of activity accompanied by fatigue, not alleviated by rest, that is present more than 6 months; post- exertional malaise; and unrefreshing sleep [1]. In addition, they must experience at least one of the two following manifestations: cognitive impairment or orthostatic intolerance [1]. Between 836,000 and 3.3 million adults in the U.S. and millions more worldwide are affected [1–3]. Many people with ME/CFS have trouble obtaining a diagnosis and feel as if healthcare providers do not take their symptoms seriously [1]. In addition, many people seeking healthcare for ME/CFS symptoms report barriers to healthcare utilization [4]. The lack of diagnosis, or length of time it takes to obtain a diagnosis, may contribute to frustration and increased misunderstanding among the community of people with ME/ CFS, friends, and families. Many patients with ME/CFS feel misunderstood and belittled by the medical community [5]. Sharing a personal story may help embody empathy for those who are not familiar with the illness and educate healthcare providers about the patient experience with an illness [6].

The field of public health has used the technique of photovoice to assist individuals in being heard about health issues [7]. Photovoice is a form of health promotion in which individuals tell their story by taking pictures from their viewpoint, in their environment. These photos, as taken by the individual, tell a story and illustrate the problem or issue that contributes to the larger health issue from the patient perspective [8]. This method is sometimes thought of as stimulating or fostering social change by raising community awareness and engagement to the issue [7–11]. Another useful method to capture an individual’s perspective is hermeneutic phenomenology (hermeneutics is the theory and methodology of interpretation) [12–14]. As described by Fuster, ‘It is based on the study of life experiences, regarding an event, from the subject’s perspective’ (p. 217) [13]. Hermeneutics enables the individual’s views of lived experiences and reflection of their interpretation to bring more understanding of their perspective. Tenets from both methods permit individuals to share their unaltered view of life events.

The Voice of the Patient (VOP) is a technique that has been used in health services research to improve healthcare and patient outcomes [15,16]. Hearing about a patient’s experience with their illness can help improve the types of services needed for certain populations and that in turn could lead to better health outcomes, and possibly identify the need for new or additional services. For example, as part of a series in ‘Patient- Focused Drug Development,’ the Food and Drug Administration (FDA) held a meeting to look at possible drug therapies for ME/CFS [17] in 2013. In the FDA’s VOP meeting for ME/CFS, the discussion focused a priori on: ‘1) disease symptoms and daily impacts, and 2) patients’ perspectives on current approaches to treating ME/CFS’ (p. 3) [17]. Patients and patient representatives shared comments through a panel format and an FDA facilitator further welcomed input from patients in the audience [17]. This model allowed the FDA to hear directly from patients and use the feedback as it embarked in its role in drug development. However, patients gave comments in a public panel format followed by a facilitated discussion, which may not have captured personal narratives [17]. In addition, some patients may not have felt comfortable sharing their personal experience in this format.

In our project, we expanded the VOP for people with ME/CFS by using tenets from photovoice and hermeneutic phenomenology. The application of these qualitative methods aimed to produce a prototype for developing ME/CFS VOP stories in which patients or family members are empowered to direct the interview by telling about their illness experiences in their own voice and importantly in their own words. Further, these stories aim to raise awareness about ME/CFS, foster social change in how people with ME/CFS are viewed, and allow patients with ME/CFS to educate the public and healthcare professionals about the illness in their own words. We report on an innovative project that considered people with ME/CFS, or caregivers, as partners in the effort to systematically tell about the illness experiences.

The ME/CFS VOP stories are grounded in tenets from qualitative research methods from photovoice and hermeneutic phenomenology [7,12,13]. Photovoice helps represent a person’s individual perspective process using photos taken by the individual behind the camera [10]. We adapted the concept of the individual driving and partnering in the interview process to VOP story development. We further used the tenet from hermeneutic phenomenology to uncover the unique personal experiences lived by people who experience their story, and in this case, the experience of living with ME/CFS [14]. Using these tenets to guide the five-step interview process allows the participant and interviewer to join together to capture individual experiences while focusing on the partnership with the participant and prioritizing the patient or caregiver perspective: their spoken words, how they choose to tell the story, and details important to them. This activity was reviewed by the Centers for Disease Control and Prevention (CDC) and was conducted consistent with applicable federal law and CDC policy. We developed VOP stories by the following five step process.

Over four years, we developed and posted eight ME/CFS VOP stories, meeting our goal of posting two stories per calendar year. These stories can be found on CDC’s ME/CFS website, in the Living with ME/CFS section (https://www.cdc.gov/me-cfs/living-with/index.html – some stories have been archived but links to those stories are provided on the same page under Resources). The stories are spaced out by approximately 6 months, which allowed time for completion of the five-step process. In some instances, a VOP story was completed in as little as 4 months while others took up to 9 months. The approximate 6-month time period to complete the process allowed flexibility for patients, whose symptoms influenced the pace (for example, scheduling of dates and times, rescheduling, interviewing, and follow-up interview if needed). In addition, it honored the draft review stage, which included edits and further communication if needed. The five-step process allows for consistency in developing each story yet allows flexibility that enables individuals to share their unique perspective of living with ME/CFS in their own words.

Photovoice and hermeneutic phenomenology tenets guided the framework for interviews in which a participant is a partner with the interviewer to tell a personal experience narrative with ME/CFS. In photovoice the individual is a driving force in narration, and as such, the individual decides the perspective or starting point of sharing the experience. Similarly, hermeneutic phenomenology focuses on the lived experiences and personal aspects of a story [14]. As applied to VOP interviews, the focus on personal explanations and perspectives of living with ME/CFS, for example, of getting a diagnosis and the real-life experiences associated with ME/CFS. Importantly, capturing experiences by adhering to the word choices of the participant, empowers the participant and further enriches the story. The process enables diverse narratives and perspectives that also capture common elements of ME/CFS illness without preconceived ideas implemented by the interviewer or process.

We found that participation in this project enabled participants to be present in driving the interview process and make decisions about how the story is told. For example, participants partnered in all aspects: scheduling, revisions, and ensuring their story is shared using their voice, with the words and phrases spoken by the participant. Importantly the process built in flexibility to allow for the real-life symptoms that disrupt and affect individuals with ME/CFS.

The sharing of these stories has multiple purposes. Participants noted that it was important to share the story so family and friends could benefit from hearing other patients’ stories to have a better understanding of what it is like to live with ME/CFS. For patients with ME/CFS, reading a story of someone who has the same illness may provide a sense of empathy and relief, and perhaps empowerment [11]. For example, one participant stated,

A spouse added, ‘The biggest challenge for me was understanding what ‘it’ is. As an active person, it was tough for me to comprehend that chronic fatigue syndrome was more than just being ‘tired’.’

Many patients with ME/CFS feel misunderstood by the healthcare system, and sharing these stories may benefit healthcare professionals by hearing from people with ME/CFS about how the illness has affected their quality of life in terms relationships, and daily life. One participant said,

Another participant stated, ‘It is just frustrating and exhausting that you have to do so much advocating for yourself because you do not have the capacity for it with this condition.’

VOP stories build a better picture that goes beyond the physical aspects of the illness. For example, many patients in the project told of having to visit a number of healthcare providers to either get a diagnosis or be heard in terms of their symptoms. Participants expressed the need for understanding what it is like to seek a diagnosis and how ‘grueling’ it is to see multiple healthcare providers just to find one who believes and listens to your story. For example, ‘Just getting a diagnosis for ME/CFS is very difficult and challenging,’ and a second person said, ‘The first thing I thought after getting my diagnosis was that someone believed me and “got it” without superfluous explanations.’ Another individual said,

By telling these stories, patients with ME/CFS and their families hope that people find inspiration in the stories as well as become aware of ME/CFS and empathize with those who suffer with this debilitating illness.

The process outlined for the ME/CFS VOP project can be employed for other similar chronic or less-recognized illnesses. For example, given some similarities with ME/CFS to post COVID- 19 conditions or Long COVID, some people with Long COVID may benefit from telling their stories, using their own voice. Additionally, hearing the stories of people with Long COVID, told in patients’ own words, may help providers, caregivers, and the public better understand the experiences of these patients, their symptoms and the long-term effects of the condition.

While this project is of the qualitative nature, there are several limitations. First is the length of the story. We were limited to how much we could post on a website page and thus the stories are limited to a page and a half of text. We know in many cases patients would love to share more about the effects of the illness on their life story yet were limited to a predetermined page length. Second, in order to assure a level of anonymity to participants, we did not include names of clinics, universities, people or in some cases, certain medications. Last, while we continuously reached out to interviewees throughout the five-step process, we did not conduct an independent systematic evaluation with interviewees. However, we did hear unsolicited feedback from participants about how thankful they were to be given the opportunity to share their stories and participate in the project, with one person stating it was additionally therapeutic. CDC promoted VOP stories through sharing of Tweets, awareness day features, and website links. However, additional outreach for healthcare providers to read these stories would advance goals towards understanding what it is like to live with ME/CFS.

This project demonstrated the feasibility of incorporating tenets from qualitative methods in a systematic manner to interview people with ME/CFS, or caregivers, and enable them to share experiences in their own voice. We believe that by sharing these stories, the quality of care can be improved for ME/CFS patients as healthcare providers, the general public, and researchers will have a better understanding of ME/CFS from the patient perspective. This project contributes to bringing the patient and caregiver perspective of living with ME/CFS to the public and highlights complexities involved with the illness.

The implications from this project are the application of tenets from photovoice and hermeneutic phenomenology to systematically guide the interviews and capture the voice of people with ME/CFS and caregivers. The five-step process replicates interviews across individuals but maintains the ability for participants to provide personal perspective and narration. The ME/CFS VOP story series allows patients with ME/CFS to share their individual personal experiences living with the illness. Participants are involved in the story development process from conception to posting and have full control over the perspective and story line.