We are failing people with chronic fatigue
The frustration in my patient’s voice was palpable as he fought back tears. “You can check my temperature, my blood pressure, oxygen levels, but why isn’t there anything that measures energy levels so I can show them I’m not making this shit up?” His distress is something I am all too familiar with, having looked after many patients with chronic fatigue.
Fatigue is a debilitating symptom which renders people unable to get on with their daily lives. I have heard hundreds of patients describe how they went from being thriving, working individuals to finding the task of making a cup of tea enough to wipe them out for the rest of the day.
Chronic fatigue is a symptom of conditions including chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia and long Covid. It can also be a manifestation of heart disease, lung disease, kidney disease and thyroid disorders.
While we have a lot of research into heart, lung and kidney disease, the research is hugely lacking for illnesses such as CFS. This causes great frustration, not just for those living with it, but also for us clinicians trying to help our patients, all too aware that, for now, there is no cure.
A common experience I hear from patients is an overwhelming lack of support from loved ones, colleagues and healthcare staff.
I believe this response from healthcare staff is because we don’t have adequate research to explain the physiological changes people experience. This makes it easy to deem people living with chronic fatigue as lazy, or suggest they are exaggerating symptoms. But nobody chooses to wake up feeling drained. Nobody wants to miss out on life happening all around them.
Employers can make a huge difference to the wellbeing of someone living with chronic fatigue by modifying their duties so they can keep working. Those of us in healthcare need to get better at listening to and supporting patients.
There are lots of management options for chronic fatigue, from medication to talking therapies, but none are as powerful as being seen, heard and supported.