Chris Dwyer, of CLL Canada wrote this about CLL-related fatigue:
While my life changed drastically after my diagnosis, I did not think I would spend the next four years fighting in court to get disability payments from my government's 'safety net'. A battle I finally lost, due to an "old school" oncologist's statement that the severe fatigue I was experiencing was not linked in any way to CLL. In fact he considered me to be asymptomatic.
Sometime later I took him to task to explain his position and after some excuses he backed down from his position and conceded there may be a link between fatigue and CLL. However the damage had been done in my case.
Later that year, I received a letter from Dr. Michael Keating, a leading CLL researcher at M.D. Anderson, as part of my court appeal. He concluded that CLL fatigue was certainly real for some CLL patients. But it is not fatigue like being tired. Rather the good B-cells in some patients sense that there are immature and malformed B-cells floating around and they set off an alarm to trigger the body's defence mechanisms. Remember how you felt the last time you had the flu or a bad cold? Tired and achy and just wanting to go to bed. Well for some of us with CLL we are 'stuck' in this condition. Finally we have a definite mechanism to explain why some CLL patients suffered from this mind numbing fatigue.