Why don’t we trust people’s lived-experience of fatigue?

Fatigue is the sort of subjective phenomenological experience that has plagued philosophers and neuroscientists for centuries.

For those with lived experience, fatigue can be debilitating, and patients can be left feeling ignored and maligned. Despite over 17 million people across Europe¹, reporting symptoms of Long Covid, with fatigue being the most common symptom, there is still widespread scepticism that the condition exists².

Meanwhile patients and researchers have been trying to get Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) taken seriously for decades, knowing the long-term effects of post-viral infections can be life-alerting. In fact, fatigue is surprisingly common across many diseases, from neurodegenerative conditions like Parkinson’s Disease (PD), Huntington’s Disease (HD), to inflammatory conditions like Rheumatoid Arthritis (RA) and Inflammatory Bowel Disease (IBD).

One of the key barriers to understanding fatigue, is the lack of objective biomarkers. When fatigue is associated with an objective marker, such as iron or vitamin D deficiency, it can bring great relief to patient and clinician alike. There is a clear cause, and a clear treatment. But when no marker exists, it can be extremely frustrating for patients to be believed, and the chances of finding a cause and, therefore relief, are greatly diminished. Patients are often assumed to be tired, sleep deprived or depressed. While fatigue does co-occur with poor sleep and depression, it also, frequently, exists independently of these conditions.

A pan-European consortium aiming to quantify and conquer fatigue

IDEA-FAST is a €42 million Innovative Medicines Initiative Joint-Undertaking funded consortium of 46 members. Headed by Professor Fai Ng, IDEA-FAST brings together academic institutes, non-profits, patient organisations, pharmaceutical companies, and industry partners, like Cambridge Cognition, to find digital biomarkers of fatigue, sleep and activities of daily living. Two thousand patients with neurodegenerative disease (Huntington’s and Parkinson’s disease) or an immune-mediated inflammatory disease (inflammatory bowel disease, primary Sjogren’s syndrome, rheumatoid arthritis and systemic lupus erythematosus) will be recruited across 21 sites.

Not only will this allow patients to have an objective marker that reflects their experience, but it will also, critically, provide a way to test if treatments are effective in changing this marker. That is the first step in finding treatments that can radically change people’s lives. As part of this impressive consortium across 15 European countries, we are proud to be trying to quantify and conquer fatigue.

It is a huge challenge, and the number of partners that have come together to tackle this, reflects the size of the problem.

Is the experience of fatigue the same for a rheumatoid arthritis patient as it is for a Parkinson’s patient? Is fatigue in the morning the same experience as fatigue after exertion? Will a treatment that works for a HD patient benefit an IBD patient?

Our hope is that short 2-3 minutes tests done on your smartphone might track the fluctuating cycles of fatigue, that improving performance in these tasks might allow us to judge the effectiveness of new treatments, and that these treatments might significantly improve daily life for millions of patients.

¹ https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition
² https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/n`