Tuesday, 7 April 2015

Cargo Cult Cures!

To be "cured" of ME is every ME patient's dream.  Why then, do I cringe at some of the recovery stories online?

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.

12 comments:

  1. Wise words Sally! i am encouraged to revisit your post on monitoring your heart rate to see if that will be a avenue to keep me paced better
    Thanks for taking time to address this big issue

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    1. Thanks Ana.
      Heart rate monitoring is a bit of a faff, but I think it helps me, so worth the effort.

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  2. I agree, it's a consequence of the heterogeneity of the disease and lack of study on etiology. I think it's unlikely that there are very many general treatments that can apply to every single person with ME. In order to accurately treat a condition, something about the cause must first be known.

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    1. Indeed - more biologically orientated research is a must!

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  3. Great post. I too get annoyed by the evangelical zeal of some of the recovered. At the same time I'm really curious about what makes people better because I'd like some of that please! I sometimes think things work for a different reason eg I'm sceptical about candida being the source of all evil but an anti candida diet encourages cooking from scratch so probably cutting out unnecessary chemicals and providing more nutrients. I pick up a general theme from recovery stories that people do a combination of things to reduce general stress on the body (eg food that's easier to digest, reduce heart rate, avoid "toxins"). It seems very unlikely that any cure will work for all of us but I continue to look for things that might help me have a better day, especially if recommendations come from people with similar symptoms. That's why im collecting tips from lots of people to see what informal patterns emerge.

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    1. Thanks. I agree about keeping to home-cooked foods and keeping other stressors to a minimum.

      I've added your blog to the "MY BLOG LIST" panel here on this blog. I thought it was already there.... omission now corrected.

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  4. I think it's really good that people try new things to help their health. However when people claim that they are cured, the problem is knowing whether they actually had M.E. in the first place, and what their definition of "recovered" is! It could mean that they now have a mild form of M.E. or that they ow have no symptoms at all. I have lots of routines that I follow, and I'm not sure if all of them are affective!

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    1. Yes - good point. Until we have better research - and biomarkers - it is not always clear what ails different individuals. Soon... ;)

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  5. Just got my first HR monitor - chest strap version - and I'm learning to pace myself with numbers. They go up distressingly high very quickly. I think it's because I try to pretend I'm fine.

    Now I'm going to stop pretending, and make sure I keep to my limit and under - and see if that doesn't work better.

    Thanks for al the good posts and data.

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    1. Thanks Alicia. Good to chat with you on FB about these things too. xx

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  6. Like Sally I used HR monitoring to learn my limits in my experience it worked to stop me becoming any more ill, 6 years later I'm not "cured". I do think I have the ME mostly under control though by strict pacing.

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