Swim little fishy

I wrote a letter in response to misinformation published in The Sunday Mail on Sunday October 9th. It was in the 'Body and Soul' lift-out of the national Sunday paper [called various things - The Sunday Mail (Qld), Sunday Times (WA), Sunday Telegraph (NSW), etc]. This question was posed in the 'Personal Trainer' column, and answered by Damien Kelly.

I must remember to do a few laps next time I'm in the bath...

Sunday October 9:

Q. I have recently been diagnosed with CFS. The last thing I feel like is exercise. Is it as important as people make out?

Bella, Spence, SA

A. Exercise is thought to be one of the best solutions for people with chronic fatigue. I understand the difficulty of exercising when all you want to do is sleep but you have to make the effort. Start with 10 minute walks every morning and increase the intervals over time. Try cycling and swimming to mix things up. Be careful not to overdo it. With exercise and regular sleep patterns, you'll soon be feeling a whole lot better.

Dear Damien,

I refer to your recent advice regarding exercise and CFS on October 9th. While I'm sure you have only the best intentions, it is inappropriate and irresponsible for you to advise someone with the medical condition ME/CFS to exercise.

Your advice is to a person who has been diagnosed with CFS - Chronic Fatigue Syndrome, not to a person who is chronically tired and wants to sleep all the time. CFS should never, inadvertently or not, be incorrectly referred to as 'chronic fatigue' - the term 'chronic fatigue' refers solely to that - the experience of being chronically fatigued. It does not represent the illness ME/CFS: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, recognised by the World Health Organisation since 1969 as an organic neurological disorder. An ME/CFS sufferer taking such advice seriously could relapse and become bedridden for weeks or months, or do permanent damage to their functional ability.

Prescribing exercise, especially knowing nothing about the severity of their condition, can be harmful to ME/CFS patients. Page 10 of the Canadian Guidelines Overview has a helpful table on ME/CFS patients' physiological response to exercise. It clearly shows that the resting heart rate, heart rate at maximum workload, maximum oxygen uptake, cardiac output, cerebral blood flow and oxygenation, body temperature, respiration, oxygen delivery to muscles and recovery period are all abnormal in ME/CFS patients.

In 1999, Dr Paul Cheney, a well-known American physician and researcher in the field of ME/CFS said, “The most important thing about exercise is not to have [patients with ME/CFS] do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive.”

An ME/CFS specialist in the United Kingdom, Dr Sarah Myhill, has this to say, "If I have a patient, or even a physician, who tells me that they got better just with a graded exercise programme, then my reaction is that you could not have had CFS in the first place. Graded exercise on its own invariably makes CFS worse. Don't do it."

Closer to home, Garry Scroop, Visiting Associate Professor in Exercise Physiology in the Department of Thoracic Medicine, and Richard Burnet, Endocrinologist, both from the Royal Adelaide Hospital, say: "Patients with CFS are not 'deconditioned'. We remain unaware of any incontrovertible evidence that the various 'exercise training' programs suggested in various articles improve either the physiological or clinical status of people with CFS."

ME/CFS requires specialist medical intervention and patients writing to you requesting information would be best advised to seek that. You seem well-meaning, I'm sure you didn't mean to provide incorrect information and I hope you will consider taking the opportunity to print a correction.

Kind Regards.

Update:
Many people wrote to the paper about this in an effort stop the perpetuation of the same old myths, I discuss the outcome here.