I am passionate about proper scientific research into ME/CFS treatments and recoveries. For many years, the dominant narrative has been that ME/CFS is incurable and unfortunate sufferers must learn to manage symptoms for life.
However, I personally recovered 17 years ago (from 11 years debilitating ME/CFS), and I have seen thousands of clients report significant improvements or full recovery in our follow-up surveys.
But I also understand that personal experience and anecdotal reports aren't enough. If we want to change our understanding of ME/CFS, we need good research. I believe we need more research focussed on recovery, rather than just microbiology of the disorder.
So this year, I have co-authored my own research paper, plus participated in two other research papers - all three have been published in peer-reviewed journals!
I co-authored a study looked at outcomes following The Switch®. Participants completed measures before the programme and were followed up at two months and again at twelve months.
The data showed statistically significant improvements across almost every measure assessed within the first two months after completing The Switch®, and that improvements continued long after completing the programme.
Read more about the findings, plus the full article here.
Of course, this study does not answer every question. Larger studies, longer-term follow-up and research comparing different approaches are needed. But I believe the findings provide encouraging evidence that The Switch® warrants further investigation as an intervention for people experiencing ME/CFS and related chronic conditions.
Sarah Cefai interviewed 75 people who had recovered from ME/CFS, including me, to explore the common threads in their experiences.
Her research identified several recurring patterns among the people interviewed. These included:
- Moving outside a purely medical framework
- Recognising that recovery is possible
- Developing self-determination in the face of adversity
- Gaining new mind-body knowledge
- Being supported and guided by others
Read the Recovery Report Summary to find out more about the patterns exhibited by people who recover.
Julie Harper also interviewed people who had recovered from ME/CFS with a purpose of identifying factors that appeared to support recovery.
Her research identified two foundational elements:
- Cultivation of a recovery mindset
- Development of an explanatory narrative about the causes and perpetuations of the illness.
Building on these foundations, participants described a number of active recovery methods including:
- Responding to symptoms differently
- Addressing underlying factors, such as emotional trauma, stress and identity factors.
What does all this research have in common?
These three pieces of research are different in their methods and purpose, but they share an important theme: recovery from ME/CFS is happening, and it deserves to be studied more seriously.
The research involving people who have recovered suggests that there may be common patterns in the way people understand their illness, respond to symptoms and approach the recovery process. My own outcome research provides preliminary evidence that participants in The Switch® experienced significant improvements across a range of measures, with some improvements continuing over the following year.
There is still a great deal we need to understand about ME/CFS, including why some people recover while others remain ill, which interventions are most helpful for different people, and what mechanisms may be involved in recovery. For people living with ME/CFS, the distinction matters. If the only information they encounter tells them that their illness is permanent and their only option is to manage their symptoms, they may never discover research exploring other possibilities.
Believing that recovery is possible doesn't guarantee recovery. But it can open the door to exploring information and approaches that someone may otherwise never consider.
Where does The Switch® fit in?
One of the things I find particularly interesting is the overlap between the themes emerging from this research and the principles behind The Switch®.
The Switch® helps people become open to the possibility that recovery is possible, develop a different understanding of the processes that may be maintaining their symptoms, and learn new ways of responding to their symptoms.
It also focuses on the relationship between the nervous system, stress, emotional experiences and the body, including addressing past experiences that may continue to contribute to a state of nervous-system dysregulation.
These principles are consistent with several of the themes emerging from the recent recovery research, including developing new mind-body knowledge, changing the way symptoms are understood and responded to, and addressing factors such as stress and emotional experiences.
That doesn't mean that the research has proven that The Switch® is the answer for everyone with ME/CFS. It hasn't.
What it does mean is that the early findings are showing promise, and further studies (hopefully an RCT trial) would be a great step.
I am proud to be contributing to that growing body of research, and I hope that this is only the beginning.
