Here is a documentary that everyone concerned with chronic fatigue syndrome or ME should should see. This little-known work tells the story of a person who got well.

By HENRIK VOGT

The condition chronic fatigue syndrome or ME (CFS/ME) is often presented as something we understand nothing about. I think we should start listening more to – and study –  those people who have lain in dark rooms and been fatigued for a long time, but who have recovered and got well again. What are their stories? What can they tell us?

Here is a documentary that shows the most striking example I have found published to date. It was made already in 2011, and is freely available on Vimeo. Still, it has gone virtually unnoticed internationally. It is called «An undeniable fact”), and is made by Rondi Størseth, the mother of a girl who also recovered. Here is a video link to the documentary:

The documentary is about a Norwegian man called Thomas, who has been given the diagnosis CFS/ME, and is lying in a dark room, non-functioning for a long time. It shows his recovery, which is striking, beautiful and important.

The method involved is called the ”Lightning Process” (LP). For me, as a professional and academic, the important thing is not this specific method. It is what such a story, and many stories like it, can tell us about these serious health problems. Some would argue that these are mere anecdotes, that one needs controlled trials to say anything. From an epistemological (theory of knowledge) point of view, I would disagree. Randomized controlled trials are important. That does not mean that cases like these, where people who are formerly very ill get better in a shorter period of time, cannot tell us anything. The causal link between the intervention and the recovery seems quite obvious. It is the man´s recovery that is «an undeniable fact», it is also a piece of empirical evidence that needs to be interpreted in context.

It is time that we listen more to those who got well. In debates – and research – about CFS/ME and other so-called «medically unexplained symptoms», the focus has beed one-sided on those who are still suffering, on the dark side.  More should be written on those who make it into the light. This documentary is a place to start.

Twitter: @henrikvogt

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