Commentary: Living with CFS/ME

During my career I have co-written several books on computer software, worked as a software engineer, and set up and sold two small technology businesses. But in April 1999 I developed tonsillitis with its usual malaise and fatigue. I naturally assumed I would be back to health fairly quickly, but, although the tonsillitis cleared, the malaise and low energy levels persisted. I felt like I was running on fumes. I had no idea why. Then my health deteriorated further.

Months passed, then a year, and now 12 years. I have occasional periods when I’m bed bound, and I am often house bound. I’m always exhausted. I often move around at home like a frail, unstable, elderly man—at the age of 38. It’s certainly made worse by my not knowing what is causing it.

My general practitioner, and many books, suggested the illness was in some way psychosomatic (“yuppie flu,” not a proper illness). I knew in myself this wasn’t true, but there was a nagging doubt. Maybe they’re right? Am I making this up? Am I really sick?

To ensure the illness was not psychological, I worked extensively with a psychotherapist. Rather than finding evidence of emotional issues that could cause my symptoms, the therapy suggested the opposite—that, given how sick I am, I have surprisingly good mental health. It delivered no improvement in my health. In fact the only things I have found that help are to get lots of sleep; to eat a simple diet of fish, vegetables, and pulses; and to almost entirely avoid meat and junk food.

Imagine having the flu, being severely jetlagged, and having not slept for two days but without the sinus and lung congestion—that’s the closest I’ve found to a description of what this illness is like, but it understates it. Sickness has become the new normal for me—my “I’m fine, thanks” is probably the same as your “I feel like death, I need to go back to bed.”

On a scale of 1-10, my energy levels typically range from three to five. Since becoming ill I lack mental clarity; I mix up words, and I have memory problems and trouble focusing. I have an enormous need for sleep, which never refreshes. There is an overwhelming, permanent, and intense malaise. Pushing my limits—for example, with aerobic exercise—provokes a severe worsening.

But I’m actually one of the lucky ones; many are far sicker than me and largely invisible. Doctors will usually see patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) only on a “good” day. Nancy Klimas treats both HIV/AIDS and CFS/ME patients at the University of Miami. In 2009 she told the New York Times, “I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses . . . I would rather have HIV.”1

The Canadian consensus case definition criteria for CFS/ME clearly distinguish it from the UK’s broad, wastebasket CFS diagnosis. The Canadian definition requires the classic symptom of CFS/ME: delayed, post-exertional malaise and fatigue. Even Peter White, who led the largest UK CFS study to date, said recently: “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME.” I believe CFS/ME is a specific, identifiable disease subset of the UK CFS definition.

Harvey Alter, of the National Institutes of Health, recently said, “I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease.”2

I’m not aware of any treatments offered by the NHS to patients like me, only illness management (pacing, cognitive behavioural therapy, and so forth). My view is that because the UK has used such a loose illness definition we have ended up in this appalling situation where the term CFS is used to group together people with severe depression (or other emotional difficulty) with a group of patients who to the untrained eye look pretty much the same but who have what seems to be a distinct physical illness, particularly characterised by post-exertional malaise. I have enormous sympathy with general practitioners faced with patients who say, “I’m tired all the time. I just can’t get out of bed.” How do they tell the difference? I’d like to see the UK adopt the Canadian definition to encourage research and new clinical approaches with what we may find is a treatable viral or immune dysfunction condition.