A recent article in the International Journal of Qualitative Studies on Health and Well-being delves into the lived experience of ME/CFS, exploring the recovery narratives of 13 young women who had fallen ill with severe ME/CFS during their childhood and adolescence, and focusing on what they had to say about their past experiences from the perspective of the present.
We know that ME/CFS can impact younger people, children and teenagers, as well as adults, so this study is particularly welcomed. Symptoms of extreme fatigue, pain, and problems with memory and cognition can be very distressing at any time of life, but can cause profound physical and psychological distress for younger patients who may have to leave school, remain housebound for long periods, and struggle to understand why doctors are often unable or unwilling to treat the illness, or acknowledge how debilitating it can be.
Since females are at higher risk of ME/CFS, this study focuses on the voices of young women who have experienced severe ME/CFS and have recovered.
A qualitative study
The researchers adopted a qualitative approach, which involved interviewing people who felt they had recovered from the illness, to gather information on their experiences of and feelings about the illness and their recovery journeys.
This women were aged between 16 and 29 years, and all were either working or in education. Six were married and one was a parent.
Transcripts of their recorded interviews were analysed using narrative thematic analysis – a way of coding emerging themes to make sense of what people are saying about their experiences. The researchers framed patients’ stories around a concept of being “unhomelike” to gradually becoming a homelike being-in-the-world.
Eight of the 13 women reported feeling fully recovered and were working or studying. The remaining five considered themselves much better.
Theme 1. Storytelling
All the women described how they had a greater need for structure and routine in their daily life (in relation to meals and sleep, for example) than they had experienced prior to illness. All told of how, when they fell ill, their parents had investigated different kinds of treatment for them, and how they themselves tried different treatments in the hope of getting better.
Most participants talked of their life prior to becoming ill with ME/CFS and then detailing what happened as they became unwell and their lives changed.
Theme 2. Bodily awakening of the self
Most also talked about the struggle to come to terms with a changed and changing body in order to find a way to rebuild one’s body and everyday life.
Cornelia, now 25 years old and a full-time student, had been diagnosed with mononucleosis and had been ill for nearly ten years.
She described a fluctuating illness during which she went through a variety of treatments including physical therapy, psychotherapy, diets, and the Lightning Process (a three-day personal training programme developed and trademarked by British osteopath Phil Parker).
But while these treatments gave her some tools to cope with her situation, she continued to get worse. Cornelia eventually sought more treatment at a public health outpatient clinic for people suffering from different kinds of exhaustion disorders. She explains:
“We (the family) understood I had to try something completely different… I couldn’t stand another collapse… My first meeting at the clinic… well, I got a good feeling as if they knew what they were doing. I was together with people of all ages, and everyone got their own exercise plan… we met like four times a week… There was nothing left of my body, I couldn’t do a thing… but you were supposed to take it very slowly… not overdoing activity… kind of get in touch with your body… very gently… slow yoga or Pilates. They helped me to find the level I could do without getting worse the next day.
The paper goes on to give even more details of Cornelia’s experience as she shared her struggles with her new patient support group, friends and family, and how she tried to come to terms with her illness, set goals and work on living life within her means, pacing and developing healthy routines.
Other accounts include Hedda, now 27 years old, who did not have an infection and had no explanation for her ME/CFS status. She was diagnosed with ME/CFS at the age of 12 after a long period of pain, exhaustion, and sensitivity to light and sound. For the next seven years she was severely ill and bedridden most of the time. Eventually she became unable to eat or go to the toilet by herself, spending her days lying completely still in bed in a darkened room.
What does this study add?
This type of qualitative study gives a deeper insight into the personal journeys ME/CFS sufferers experience, whether adults or younger people. Qualitative studies of this kind are often looked down upon in academic circles as low-quality evidence. However, they are particularly important in ME/CFS where so little is known about the illness and how it impacts patients.
This study focused on patients who recovered, or felt near recovered. Despite advertising nationally, they received a small number of contacts, showing us that finding fully recovered people can be difficult, given rates of recovery may be low.
The authors applied themes to the interviews, describing coming to terms with the illness and searching for answers. A study like this cannot tell us much about what actually changed in their bodies to move from a status of living with ME/CFS symptoms to no longer having ME/CFS – that is the million-dollar question we would all like to know the answer to.
What a paper like this does best is provide a window into the illness and into the lives of those fortunate sufferers who go on to recover.
As we see in the paper, recovery is non-linear for those who have recovered; i.e. they improve and have set backs. Many took many years to recover and tried many different treatments in search of a cure or way to recover. This shows that ME/CFS sufferers are highly motivated to improve and recover, and busts the myth that ME/CFS patients want to adopt a sick-role and avoid activity.
Cornelia, Hedda and the others continually tested their body’s tolerance and worked to create a more confident self as they were able to improve in small steps. They also describe a complex exploration of all possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained – a journey of many physical and mental challenges.
What we already know about ME/CFS and recovery rates in younger sufferers
Epidemiological studies report a wide range of prevalence estimates of ME/CFS in this age group. Some estimates are as low as 0.1%, while others suggest rates of 2.6%, and rates for CFS-like illness go as high as 4.4%. Girls are at greater risk of developing ME/CFS, particularly post-puberty, and a Norwegian study in 2014 found two peaks in incidence around the mid-teens (age 10 to 19) and into the mid-30s (age 30 to 39), with a female-male ratio of 3.2: 1.
Recovery is often a controversial topic in ME/CFS science, given that it is estimated that only a small percentage of adults fully recover after suffering ME/CFS disease for more than one to two years, and that adults in the 25% most severely afflicted have an even lower chance of recovering.
Therefore, it is particularly fascinating to hear from young patients who went on to recover from ME/CFS in adulthood, but as Geraghty & Adeniji pointed out in their paper titled “The Importance of Accurate Diagnosis of ME/CFS in Children and Adolescents: A Commentary”, children and teens have significantly higher rates of recovery compared with adults, but the epidemiological picture is marred by a large problem with misdiagnosis of ME/CFS in younger people. Essentially, many young people, suffering from all manners of illnesses and other life challenges, can receive an ME/CFS diagnosis, making measurement of recovery more unreliable.
Conclusions
The researchers end their paper by concluding that “ME/CFS emerges as an inter-personal, contextual, fragile and non-linear homecoming, based on a gradual rising bodily based self-knowledge”.
What that exactly means isn’t really clear in the paper, other than we did learn that ME/CFS certainly challenges feelings of ‘self’ and personal identify and recovery, improvement, or even deterioration is certainly non-linear for many people living with the illness.
The authors also conclude that recovery seems to be an ascending process, whereby the illness slowly fades into the background as the healing patient moves on with their life and focuses on tomorrow. That certainly makes a lot of sense and will resonate with anyone who has recovered from ME/CFS – those fortunate small number of sufferers who go on to see full recovery.
In terms of further research, the authors highlight the need for more exploration of the specific health needs of children and adolescents in recovery from ME/CFS as they navigate a path to their own homecoming. They are not specific about what this means, but we can all certainly agree that younger people living with the illness need as much support as they can get from all quarters, including family and health professionals.
