Occasionally patients die from CFS. They die because they get metabolic failure and heart failure. And that’s why there’s an organisation called the Alison Hunter Foundation. Alison Hunter died in the 1990s from metabolic and heart failure after they tried to treat her for CFS. I’ve had eight patients die on me in the last few years … some by suicide because they couldn’t live any longer with the illness, and definitely some, unfortunately, by the neglect of the medical professional in understanding the complexity of their medical condition.
What do you think needs to be done to better educate the public about CFS and how debilitating it can be?
There is a lot of unfortunate mismanagement and misdiagnosis because it’s called CFS. People are devalued in the diagnostic process and the treatment process because they’ve got this label that stigmatises them, and we have got to get rid of this. CFS has nothing to do with fatigue. Fatigue is the underlying response to all of the other dysfunctions that are occurring in the body.
We need more good quality research with proper diagnostic criteria done by qualified medical people who are in the field. People like me need to publish articles, we need to publish everything we find in the patients we are seeing, and we need to have it verified.
Most of the funding for CFS goes to the people who are looking for psychological causes, and they treat it with graded exercise and Cognitive Behaviour Therapy, which is wonderful if you’re in recovery, but makes no difference to someone who is profoundly ill. Generally, people in Australia will know someone with this disorder. That’s the nature of it. Every GP has them in their practices, and every GP should know how to diagnose it.