I welcome your call for patient involvement in defining the symptoms of ‘long COVID’ (Nature 586, 170; 2020). However, in drawing comparisons with the history of chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME/CFS, you perpetuate a dangerous misconception.
Your use of the past tense — for example, in saying that people with ME/CFS “struggled” to have their condition recognized, they “were not” listened to and the “patient voice was marginalized” — wrongly implies that those problems have been solved. The reality is that the tragic situation continues.
Global research spending on ME/CFS averaged just US$6.5 million per year globally in 2006–15. This received a boost when the US National Institutes of Health committed to more than doubling its spending in this area, reaching US$15 million in 2017 (Nature 553, 14–17; 2018).
Like long COVID, ME/CFS is an intractable, heterogeneous condition. Its causes are unclear, preventing long-term effective treatment. The urgent need for high-quality, imaginative and ambitious research should therefore not be undermined by downplaying the current impact of this condition on millions of people around the world.
In our quest to help people with long COVID, let’s be candid in our portrayal of ME/CFS, the ongoing struggles of those with the condition, and its uncertain prognosis.
