Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in New Zealand affects about 0.4% of the population.
There will be up to 100 affected among our university student population.
It is not surprising then when I mention our ME/CFS research in a lecture, those affected make contact.
When they talk to me they initially seem healthy, bright and interactive (invisible illness
But having been part of an ME/CFS family now for 30 years, I understand they have rested and prepared for the visit, and after relatively short conversation fatigue often sets in.
This phenomenon explains why health practitioners and social agencies without a good knowledge of the illness are perplexed; indeed there are examples of Work and Income-required designated doctor consultations of seven minutes resulting in pronouncement that the ME/CFS patient can work full-time, despite being housebound long-term by the ravages of their “invisible” illness.
For this reason my research group’s focus has been to lift the “veil of invisibility” and find biological explanations for the illness.
