I don’t share Made in Melbourne’s optimism about this piece in the Age, Layne Beachley’s “Beating Chronic Fatigue Syndrome”. (Yes, she’s selling something – her book and her sports clothing brand.) Beachley writes:
Relief finally came when I sought treatment from a naturopath. I was placed on an extremely restricted diet in conjunction with a nutritional programme of dietary supplements and vitamin injections.
The dietary regimen consisted of no yeast, wheat, sugar, dairy or fruit. Tough but manageable. The hardest part was the ban on exercise. No surfing!
Being so physically active, the experience of my body shutting down on me was too much for me to accept at the time.
I spiralled downhill rapidly as I continued to buy into what everyone was saying about me compounded with self -hatred and impatience.
But I couldn’t begin to overcome the illness until I changed my attitude.
Reading about CFS helped me gain an understanding of what was happening to my body. With greater knowledge I realised that it was okay to feel as bad as I felt.
Once I stopped beating myself up my health started to improve.
For me, articles that trumpet things like “Diet and an attitude change cured my CFS!” are not just unhelpful, but can be positively harmful.
Aside from the gratuitous and inaccurate “Yuppies’ Disease” slam at the start, there is nothing in the article that adds new information to people with no CFS experience or knowledge, little that attempts to break down existing stigma, and plenty to reinforce trivialising and PWD-blaming attitudes. There is nothing about the difference between burnout or “chronic fatigue” or mimic conditions and CFS/ME. There is no realistic attempt at myth-busting, only a grudging “Oh, it’s a ‘real’ disease now” – followed by the idea that an “attitude change” can fix it.
If an attitude change can fix it? That means that the cause is an “attitude problem”.
The institutionalised idea that CFS is an “attitude problem”, an idea that still holds a lot of currency amongst uninformed and prejudiced medicos, has led to the very worst abuses of CFS patients. Maybe Layne did have some psychological issues that needed sorting out – but a throwaway line like that reinforces bigotry and does untold damage to people trying to live with this heavily stigmatised illness.
Everyone who’s ill needs to adjust to coping with that illness. This comes as no surprise to anyone with CFS, people with diabetes, people with arthritis, people with autoimmune diseases. Where the article goes wrong is in the assumption that it’s the attitude adjustment that produced the cure. If an attitude adjustment seems to cure CFS/ME? Guess what, either that was the wrong diagnosis in the first place, or the illness was already going to get better, and the natural desire of all people to seek patterns and to attribute causation drew the connection. Sometimes warts get cured after rubbing them with a potato then burying the potato in a graveyard after midnight at a full moon. That doesn’t mean the potato did it, but humans will ever be susceptible to the post hoc ergo propter hoc fallacy.
The worst CFS-related experiences I’ve had with people in my life is with people who “know” that diet, exercise, positive thinking, antidepressants, vitamins, herbs, energy medicine, or some other cure-of-the-week else “cures” CFS – because they read it in the paper, or know a guy who knows a guy, or “hey my neighbour sells Neways and…”. I’ve gained support from those who have been through this, and from those who know nothing. But people who have a tiny bit of misinformation or have read a few half-truths? They’ve been by far the worst.