Perhaps it is the inevitable "recovery advice" that these individuals seem keen to offer. The message seems to be "Do just what I did, and you too will be cured!" Or at least that is how the media like to spin these stories.
Yet for those of us hoping to follow in the recovery path of these fortunate folk, we can end up finding the "cures" remarkably ineffectual.
Indeed it is my suspicion that a large portion of recovery is akin to rolling six sixes simultaneously on a set of dice. In this context questioning the recovered individuals about how they achieved recovery, is about as useful as asking a person exactly how they rolled all those sixes!
Imagine if I got my six sixes (or my miracle cure) today - and then tried to work out why it was that I got my lucky break. Perhaps it was the fact that I ate a gluten-free diet, or that I'd been undergoing a new programme of therapy, or perhaps I might attribute my good fortune to something as surreal as wearing my lucky red socks!
The truth? In hind-sight it's very difficult to say which factor worked, or indeed if any of them had any effect whatsoever.
Yet for a good story, I'd be likely to pick my current favourite, and offer it up as "the thing" that helped me, and I'd hope that my strategy might provide the key for some-one else.
To be honest, I'm not critical of folk discussing strategies that have helped them. As many people know, I monitor my activity and heart rate daily, and am convinced that this strategy, along with a gluten-free diet is somehow helping me.
Nor am I being critical of patients trying to find something new that works for them. Not at all, but I am cautious of individuals on the internet who promote their programmes and imply that if you do exactly as they did, then you too will be well! (And I really dislike the flipside of these programmes, where the patient is blamed for not fully adhering to the protocol when the programme fails.)
Which brings me to the title of this post. Cargo Cult Cures - I wonder if some ME cures on offer, are a bit like the "Cargo Cults" that apparently sprung up after the Second World War.
The Cargo Cult story goes something like this: Villagers in isolated areas saw soldiers arrive and build airstrips and control towers, and soon after aeroplanes full of supplies arrived. Later, after the soldiers departed, the villagers tried to employ the same techniques to attract further bounty from the skies. It is said they built replica airstrips, replica control towers and even replica wooden radios. When the supplies failed to arrive, they thought they must still be missing some vital detail, and so the replicas became more elaborate and detailed.I just wonder, in the absence of any real medical advances for ME, do we sometimes get caught up in creating our own Cargo Cult Cures?
I admit I have various routines, and practices that I follow, in the hope that they will help me recover. I am in no position to be critical of anyone doing this.
I'm just urging caution, because until our condition is more fully understood, we really can't know if all our efforts are likely to pay off.
Cargo Cult Epilogue: Apparently much later, visitors to some of these areas arrived by aeroplane, giving rise in the villages to the belief that the Cargo Cult activities had succeeded.
So perhaps, until more is known, we need to be gentle with ourselves, and if a protocol is becoming more effort than it seems to be worth, we should not be too harsh on ourselves if we decide to let it go.