In recent years, several qualitative studies have explored the journeys toward recovery of numerous people with ME/CFS and Long COVID. These studies show remarkable consistency in their observations.
This does not mean that everyone follows the same path, or that one person’s story shows what will work for others. However, when recurring themes emerge across different studies and groups, they deserve attention.
Qualitative research explores how people understand, experience, and make sense of the world. It examines meaning, perspective, and context through observations and experiences, rather than numerical measurements. It has well-established academic foundations, methods, and rigour.
We summarise some of these studies below.
1
Sarah Cefai’s Recovery Report
This report is based on 75 interviews from Raelan Agle’s YouTube channel.
Sarah found recurring themes around learning from people who had recovered: believing recovery was possible, exploring nervous-system and mind-body approaches, finding support, and becoming more active participants in recovery.
The report states that the negative message of “non-recovery” from doctors influences the way the illness is experienced and narrated. These narratives lead people to seek care outside their home medical settings. There, they can gain the belief that recovery is possible. Developing this mindset is related to self-determination and finding their way out.
2
Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome
Anne-Karen Bakken and colleagues interviewed 14 people who had recovered from very severe ME/CFS. They had all been bedridden and dependent on care for over 3 months, and classified as very severe ME/CFS using NICE 2021 criteria. This is important, as there is so much pessimism around severe ME/CFS.
Their stories shared a clear turning point: a different understanding of the illness, a change in mindset and a growing sense of agency, followed by a longer process of working towards recovery.
3
Reclaiming health: a qualitative, explorative study of long covid recovery journeys involving mind-body approaches
Christine Deurman and colleagues spoke to 18 women who considered themselves largely recovered from Long COVID after using mind-body approaches. The participants had symptoms for 5 – 32 months and had been severely incapacitated.
A common pattern was a shift towards understanding symptoms through nervous-system dysregulation and mind-body interaction. Participants described this as a turning point that brought hope, followed by experimenting, adapting and gradually re-engaging with life.
4
Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study
Zara Hasan and colleagues from McMaster University interviewed 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS. 7 reported full recovery and 26 partial recoveries.
Participants described spending time and energy finding and implementing therapeutic interventions, usually without guidance from a medical practitioner. Most fully recovered patients attributed their success to mind-body approaches.
5
Full recovery is possible: how women recover from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) outside formal clinical settings
Julie Harper and colleagues studied 8 women who considered themselves fully recovered from ME/CFS after using psychologically mediated approaches.
Two themes stood out: believing recovery was possible and developing an explanation for what might be driving or maintaining symptoms.
6
Narratives of recovery from persistent fatigue: a stepwise learning process
Hannah Linnros and colleagues interviewed 14 former patients with ME/CFS, Long COVID or exhaustion disorder.
They described recovery as a nonlinear, step-by-step learning process. A turning point often involved finding hope and a new understanding of symptoms, followed by testing things out and gradually regaining confidence. Importantly, hearing recovery stories from others helped participants believe recovery was possible.
7
Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care
An interesting study in fibromyalgia was conducted by Caroline Cupit, Teresa Finlay, and Catherine Pope. They conducted 59 interviews and 200 hours of observation related to fibromyalgia care including services taking a biopsychosocial approach
Their findings suggest that repeatedly presenting fibromyalgia as a condition that is permanent or unlikely to improve can undermine the efforts to support recovery. They term this “chronicity rhetoric”, meaning messages to persuade and influence people to convey that they will not recover. The researchers also describe how biomedical research and the welfare benefits system can reinforce the chronicity rhetoric.
8
Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment
Tom Ingman and colleagues interviewed 19 people with CFS receiving CBT and used standard methods to identify several themes: patients saw this as a personal process; defined recovery in terms of reduced symptoms; and saw recovery as a process of rebuilding, regaining, and retraining that sometimes disrupted old ways of living.
We know that recovery from chronic fatigue conditions, including ME/CFS and the post-COVID-19 condition, is often experienced differently by different people. Qualitative research helps capture that.
Paul Garner, writing about his own recovery from the post-COVID-19 condition in 2021, argued that “we need to listen to communities of people who have recovered”.
FatigueScienceTalks, the video series where patients talk to doctors and scientists, has also explored this directly. In one of their videos, Julie Black and Vanessa Wilhelm both share their experience of listening to recovery stories and how these helped them in their own recovery. Watch the video: “Persistent Symptoms after an infection – what is going on in the brain?“
This emerging research is perhaps helping open the door to a different understanding for patients and health professionals – to help find strategies to not only manage symptoms, but to recover. None of this proves that one approach causes recovery. Qualitative research can’t establish that. But it can help us spot patterns, turning points and questions worth exploring further.
We spend a lot of time asking why people remain ill.
Perhaps we should also be asking: What changes when people get better?
That is the purpose of The Recovery Channel: to showcase recovery stories, make them easier to find, and help people see that there may be different paths out of persistent illness.
If we want to understand recovery, listening to the people who have recovered seems like a very good place to start.