Though there is a call to distinguish between the disease myalgic encephalomyelitis (ME) and the syndrome CFS, many with a diagnosis of CFS do not have ME.
What is your definition of chronic fatigue syndrome (CFS)?
CFS is an umbrella term, which means every patient has a slightly different disorder. Many patients have disorders in common, and, yes, there are protocols for their treatment. However, there is not one protocol for their treatment, because you are dealing with multiple manifestations of different illnesses, which are similar but may need totally different treatments. The response to treatment with every patient is different, too.
CFS fills many boxes. It’s not a ‘here, do this test, make this diagnosis, do this treatment, patient gets better’, type syndrome, and because of that we have to think in a very broad sense.
Also, CFS is not about fatigue. Fatigue is the response of the body to all these significant disruptions in various body functions: brain, heart, muscle, joint, gut, bladder, sleep cycle, cognitive function, autonomic nervous function …
What is your approach to patients who have been given a diagnosis of CFS?
Because I think there are multiple conditions and multiple causes, I treat the symptoms, but also try to understand the cause and treat the cause. You have to be enormously careful with the treatments, and every individual has to be treated individually.
I’ve treated over 2500 patients with CFS, and I’m writing an 800-page book on the disorder. I’ve tried to look at the causative agents and the dominant features of the type of CFS the patient has. The predominance of my patients have an infection that is active, such as Lyme disease, which is a true, measurable infection.
Anyone who tells someone with CFS that it’s in their mind, has made a huge diagnostic error – it’s a criminal, negligent offense against the patient.
Do you feel someone diagnosed with CFS can dig further to find a more specific condition?
Absolutely, and I do a number of tests to diagnose all different conditions, all giving the same symptoms, all needing different treatments.
There are tests available for every individual who has this illness, and every individual deserves the right to be tested for the appropriate things that their history and examination would guide the practised physician towards selecting. Diagnostic criteria and diagnostic tests help ascertain whether a patient has a particular form of CFS. That’s why I’m writing a book on corrected diagnoses, as opposed to labelling them all under the one heading.
Part of the problem is, the doctors who treat CFS have to be extremely clever clinicians. We have to be the old diagnostic physicians. Now those sort of specialities are dying out. As a GP, I trained as a diagnostic physician, so my whole passion was diagnosis, and you can’t make a treatment unless you make a diagnosis, but others don’t have the time to spend, like I do, on making a diagnosis.
I simply can’t do it without spending lots of time with people. It’s not a five-minute diagnosis: “Oh, you have chronic fatigue, take this and you’ll get better.”
We need doctors trained in this, we need clinics, and we need to have this as part of undergraduate training.
In your experience, can people who have been diagnosed with CFS ever fully recover from the condition?
Fifty per cent of my patients have fully recovered. I think it’s absolute nonsense to suggest to people when they present with CFS that they don’t recover.
About 50 per cent fully recover, about 20 per cent are significantly better, 20 per cent are still very unwell, and 10 per cent get worse. 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.
We also need to have very good CFS organisations set up and run by people who don’t have CFS themselves, but have the passion … with professional workers, counsellors, and nurses to give advice. It may include people who have recovered from CFS, but also people with some insight into medical conditions and social justice issues, to run these organisations, produce newsletters, raise funds … to fund doctors and people who have clinical experience and treatments in CFS, fund research, and try to improve the profile of CFS. And we need special clinics in hospitals for people who are disadvantaged, on low income, and don’t have any money.
Finally, we need to use the media. The media is the greatest way to disseminate information. We need to be on TV, we need to be on radio … I’m very vocal about this condition. I know a lot about it, but I don’t think I have all the answers. We should be interviewing everybody [with knowledge on CFS]. Let’s get more information out there …