Professor Alan Goodman - his wife has had it for 22 years.
Goodman is a biological anthropologist who initiated an event to motivate academics from both medical and non-medical disciplines to study and publish on ME/CFS. For further details, refer to the PR thread entitled "Massachusetts professors get pre-release screening of Forgotten Plague, go off to write papers".
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@helen, sorry for being so slow to reply.
During a presentation Mella gave at the premiere of the film Perversely Dark, on 12 May 2014, he mentioned that his sister-in-law had been diagnosed with the disease as an adult. This presentation is available on youtube.
Deleder2k subsequently posted that this sister-in-law died before Mella and Flug had come up with their Rituximab treatment (refer PR thread entitled "Looking Ahead to obtaining Rituximab Treatment").