Key messages
- ME/CFS is a serious, complex, and often misunderstood disease which can vary over time and between individuals meaning it is very diverse.
- Dr Dana Brimmer and colleagues recognised the diversity of the disease and noted that many people with ME/CFS “often feel misunderstood and report facing barriers to healthcare utilization”.
- To explore the lived experiences of ME/CFS, the research team developed a study – published in the journal “Fatigue: Biomedicine, Health & Behaviour, which used methods that “prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS”.
- Over 4 years, stories from eight people with ME/CFS were posted on the Centres for Disease Control website – two stories every calendar year.
- Many participants in the project shared experiences of having to visit several healthcare providers to either get a diagnosis, or to be heard in terms of their symptoms, in fact participants expressed the need for “understanding of what it is like to seek a diagnosis and how ‘grueling’ it is to see multiple health care providers just to find one who believes and listens to your story.”
- Considering the stories of people with lived experiences of ME/CFS is essential to gain a better understanding of – and illustrate, not only how the disease impacts day-to-day life, but also how this varies between people with ME/CFS, and even within the same individual over time.
Background
ME/CFS is a serious, complex, and often misunderstood, disease with a wide range of symptoms, which according to the 2021 NICE guidelines for suspecting and diagnosing ME/CFS, include (but are not limited to):
- Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
- Post-exertional malaise (PEM) after activity in which the worsening of symptoms is often delayed in onset by hours or days, disproportionate to the activity, and has a prolonged recovery time that may last hours, days, weeks or longer.
- Un-refreshing sleep and/or sleep disturbance, which may include feeling exhausted, feeling flu-like and stiff on waking, and broken or shallow sleep, altered sleep pattern or hypersomnia (excessive sleepiness).
- Cognitive difficulties, often referred to as “brain fog”, which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
Importantly, different people experience different combinations of these symptoms, and they can also vary in severity between individuals, and within the same individual over time, meaning that the disease is very diverse – heterogeneous, in nature.
Although research has shown that people with ME/CFS have biological abnormalities that are associated with disease severity and symptoms, there is still a misconception amongst many people – worryingly, including health professionals – that the disease is psychological in nature rather than biological. This misconception has impeded biomedical research and understanding of the disease, and led to potential harm to people with ME/CFS – including misdiagnosis, delays in diagnosis and treatment, and dismissal of symptoms (medical gaslighting).
Dr Dana Brimmer and colleagues recognised the diversity of the disease, and noted that many people with ME/CFS “often feel misunderstood and report facing barriers to healthcare utilization”.
To explore the lived experiences of ME/CFS, the research team developed a study – published in the journal “Fatigue: Biomedicine, Health & Behaviour”, which used methods that “prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS”.
The goal of the project was to post each story anonymously on Centre for Disease Control’s (CDC’s) ME/CFS website, and the research team noted that the stories shared by people with ME/CFS in the study:
“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 health care professionals about the illness in their own words”
What did the research team do?
Firstly, the research team ensured that a diverse set of participants were included in the study to reflect that the disease does not affect everyone in the same way.
Once recruited, all participants were interviewed; interviews were conducted by telephone and not recorded, rather the interviewer took notes of what was said. Interestingly, the interviewer observed that the notetaking did not appear to disrupt the flow of the conversation, and some participants even expressed that they were relieved that the interview was not recorded.
Although the interviewer had a flexible interview schedule, the researchers stated that in most cases, it quickly became clear that the interviewer had no need to ask questions from the guide because the proposed questions originated naturally from the story being told by the participants. Rather, the guide acted as a tool to “break the ice” as the process of storytelling opened up organically – as the participant began to share their story, most of the questions in the guide were answered without being asked.
Once the interview was completed, the researcher wrote up each story using the words of the participant. Once drafted, each participant checked, and had the opportunity to review – and edit, their own story. Following this, the researcher and the participant worked in partnership to finalise the story before being published on the CDC website.
The authors highlighted that respecting the participants was central to the research project; the research team stated that the term “respect” was used in a broad sense to include “recognition of the illness impact (i.e., symptom flare ups), scheduling (i.e., times and dates), and the personal nature of sharing intimate details”.
Overall, the methods used focused on the lived experiences and personal aspects of a “story” told by participants – the research team stated that this enabled them to capture “personal explanations and perspectives of living with ME/CFS, for example, of getting a diagnosis and real-life experiences associated with ME/CFS”.
What did the study find?
Over 4 years, stories from eight people with ME/CFS were posted on the CDC website – two stories every calendar year.
Many participants in the project shared experiences of having to visit several healthcare providers to either get a diagnosis, or to be heard in terms of their symptoms.
Participants expressed the need for “understanding of what it is like to seek a diagnosis and how ‘gruelling’ it is to see multiple health care providers just to find one who believes and listens to your story.”
Notably, one participant stated:
“Medical professionals need to see the disease from the patient’s perspective. They need to understand what it is like to live with ME/CFS. They need to understand the burden of the disease itself and to end the stigma attached to it”
Another said:
“It is just frustrating and exhausting that you have to do so much advocating for yourself because you do not have the capacity with this condition”
Strengths:
The authors stated that the study had several strengths:
- The methods used enabled the participants to share their experiences in a way that was not affected by any preconceived ideas implemented by the interviewer or the research process.
- The researchers adhered to the word choice of the participant.
- The process used during the study built in flexibility which allowed for the “real-life symptoms which affect and disrupt the lives of people with ME/CFS”.
Limitations:
The authors acknowledge limitations of this study, these include:
- The participant’s stories could be no more than a page and a half in length as the amount of information that could be shared on the website page was limited.
- The researchers stated that it was clear some participants would have liked to have shared more about the effects of the disease on their life story.
- To ensure anonymity to participants, the researchers did not include names of clinics, university, people, or in some cases, certain medications.
- While this is a strength in ensuring the participants are not identifiable from their stories, it means that some important details may not be fully captured.
Conclusions:
Considering the stories of people with lived experiences of ME/CFS is essential to gain a better understanding of – and illustrate, not only how the disease impacts day-to-day life, but also how this varies between people with ME/CFS, and even within the same individual over time.
For this study, the researchers stated that the sharing of the stories captured through this project on the CDC website had many benefits:
- Participants noted that family and friends could benefit from hearing other patient’s stories to have a better understanding of what it is like to live with the disease.
- For those with the disease, reading a story of someone who has the same illness may provide a sense of empathy and relief, and perhaps some empowerment
- These stories may help to increase understanding of healthcare professionals by providing information directly from those with ME/CFS on how the disease has affected quality of life in terms of relationships, and daily life.
