This collection of videos illustrates key symptoms of ME/CFS: important when making a diagnosis. Patients describe these symptoms themselves. They had been ill for between two to thirty five years when interviewed and their age at onset ranged from ten years to middle age. The interviews give an idea of both the range and consistency of key symptoms.
The videos provide a body of first-hand evidence. They can be just started, or dipped into, to get a ‘taste’ of the disease. They help recognition of the distinctive qualities of the symptoms in ME/CFS. Some supplementary information relevant to diagnosis is also included.
Originally it was intended that the patients would all have been assessed by and donated blood samples to the UK ME/CFS Biobank. Due to difficulties with timing, the unpredictability involved when interviewing severely ill patients and then the dangers of Covid19, we included two patients who had been diagnosed by ME specialist Dr William Weir. We also made use of interviews with advocates with longer illness, to enable a more comprehensive picture of ME/CFS.
Sadly, between a third to half of contributors have deteriorated substantially since being interviewed: due to further infections, the impact of overly demanding life conditions, or in one case hospitalisation has had a very serious impact. We are extremely grateful to all these contributors. They have made this project possible, by being willing to share their experiences for all to hear and learn from. Thank you.