As scientists, it is very easy for us to focus on the biological details of an illness like ME/CFS and forget about the patients themselves. Hence the value of studies such as that by Eva Stormorken at the University of Oslo and Prof. Leonard Jason at DePaul University in Chicago, who in 2015 looked at the experiences of patients with post-infectious fatigue syndrome (PIFS).

PIFS can be considered a subtype of ME/CFS where symptoms develop following a definite infection. In this case, patients were infected with the parasite, Giardia lamblia, which had contaminated the water supply in Bergen, Norway.

This parasite causes diarrhoea and other intestinal problems, and can generally be treated with antibiotics. But some individuals develop persistent tiredness, and following the Norwegian outbreak a number reported severe fatigue for several years and were subsequently diagnosed with PIFS.

Eva and her team interviewed 26 of these patients, and found that ‘fatigue’ did not fully capture their experience of the illness. They also described emotional fatigue, cognitive problems, and a flare-up of symptoms following overexertion, as well as many other problems.

The group has now followed up this work by looking at how these patients’ experience of PIFS changed as it developed over the four years following their initial infection. The paper, published in BMC Family Practice, is available to download in its entirety and is well worth reading for its insights.

In-depth interviews were conducted, lasting up to two hours, in which the participants were asked to describe their life over the four years since they had become ill, including how the condition affected their work, studies, leisure activities and everyday life.

Essentially, people went through five overlapping phases.

In the first, prodromal phase, from being healthy and living ordinary lives, patients began to experience the diarrhoea and intestinal symptoms that characterise infection with the Giardia parasite. Once they had been diagnosed and treated to cure the infection, severe fatigue developed over weeks or months.

Individuals then entered a downward phase with a continuous decline in physical, cognitive and emotional function – “a dramatic change in health” they had never experienced before. New symptoms started to appear affecting several body symptoms, and patients had to stop fulltime work or study, some even becoming housebound or bedridden.

Eventually, this downward trajectory eased and people entered the turning phase, with their health at an all-time low, and unable to have much social interaction or fulfil family responsibilities.

And then, gradually, patients found they had fewer symptoms and a bit more energy, and were able to go for a walk or communicate with others better than they had. This upward phase was often slow, and there could be relapses, but functional ability did improve to a greater or lesser extent.

As they entered the chronic phase, around a third of patients had improved to the extent that they were able to work or study part-time. However, the rest still could not work, and a few continued to be severely disabled with very little improvement. People found that some symptoms improved while others stayed the same, and they described a period of struggling to find their limits.

The conclusion of this paper is that the needs of these people were not met. The progression of their illness into severe disability could perhaps have been altered sooner with earlier diagnosis and intervention, and better recognition and understanding of the condition.

This may seem like depressing reading, but it is essential that the real, lived experiences of people with PIFS and ME/CFS be understood and taken seriously, and this article provides valuable insights into this important area.