On the various miracle ‘cures’ for ME/ CFS

On the many and various miracle ME cures

Alright. So I’ve been annoyed about this before but now I’m pissed.

The situation is this: unlike most chronic illnesses, ME has a chance of recovery. It is a small chance, but people know that chance exists. At the same time, the NHS and just about every other medical care organisations have no solutions to it. They know people recover, but they don’t know how or why, or anything at all really. Asking seven different doctors about what causes it will get you seven different answers. The NHS, like most places, has settled on a core treatment plan of anti-depressants, CBT and graded exercise (aka ‘we don’t know what the fuck to do but we’re pretty sure antidepressants and CBT are the solutions to everything’). This plan peddles false ideas about what ME is, and is at best completely ineffective, and at worst, very damaging. So what we’re left with is a bunch of people who can’t get help from the medical system, but know they could recover.

This is pretty much a recipe for disaster. It leaves a lot of people wide open to abuse and scams. They will try literally anything no matter how ridiculous it might sound, but quite reasonably, since they’ve been led to believe it will cure them. There are now a lot of supposed miracles cures (scams) so people never have time to stop throwing cash at them because there’s always another to try. Whether it be herbology, reflexology, osteopathy, reiki, meditation, yoga, naturopathy, supplements, expensive gadgets, miracle potions, whatever, the list doesn’t end. And people go through a constant cycle of getting their hopes up, to have them dashed again, repeatedly, and no money at the end of it. It is blatantly exploitative. You can say people deserve it for falling for scams but honestly, if you thought something could get you out of the bed you’ve been in for years, out of the pain you’ve felt for years, and living a normal life? You’d try it.

Trying to navigate this huge mess of ‘my friend’s sister had ME and they tried [insert blatant scam here] and now they’re completely better’ is difficult. You’d think it’d be easier, but you keep telling yourself that science knows fuck all about what’s going on with our bodies, it might involve this, this might be the thing that’s causing it. And you have to pull yourself out of that mind set and work with the scientific knowledge available to assess whether it’s likely that this might work.

This can help when it comes to naturopathy and alternative medicine, but this then leaves you thinking you might have all kinds of deficiencies. And fair does, I’ll admit, this seems most likely, lots of deficiencies mimic these symptoms, and you should definitely get tested, but before you know it you’re off to Holland and Barrett and you’ve spent hundreds on supplements. Months later nothing’s better but you’re still taking 16 vitamins a day wondering where all this extra energy you were promised is. After all it is true that many deficiencies don’t show up on standard tests. And that most of the supplement is lost in the stomach and bam, you’re off again buying patches and sprays and injections. So it can by-pass the stomach, you understand.

Then there’s the gadgets and programs and processes and miracle potions all of whom will will cloud everything up with scientific sounding jargon that actually sound legitimate and impressive. Shove a load of testimonials on, pay a few people to wander about the support groups telling everyone how miraculously cured they are and you’re golden. The worst bit is that these things are the ones easiest to fall for, but they are also consciousness-losingly expensive. I’m talking thousands here. All the while people keep telling you how suddenly better they are thanks to it, but when you try and ask how it works they can’t tell you. Later on you find out the whole thing is run in a horribly cult-like way where they’ve successfully managed to tell everyone if they tell people what’s actually involved it won’t work.

At this point all I can think about is what utter disgusting scumbags these people are.

Oh, sorry, that was a negative thought, I guess now I’m ill forever.

People with ME: science got us pretty damn far. You’ve been knowing and saying since onset that you have a very real physical condition. It is not psychological. You’ve already said therapy will not fix your physical illness. Please bear this in mind. There is this pervasive overriding narrative that positive thinking is going to heal everything. Positive thinking is good, and sure it helps, but never allowing yourself to ever say anything negative until you’re bottled up because you can’t tell anyone how you feel or say you broke your limits hours ago and you can’t go on? This isn’t healthy. And it has fuck all to do with your illness. You know what is healthy? Respecting your body’s limits and talking to people when things aren’t going well. The constant pursuit of the miracle cure is exhausting and if you never stop, you’re going to drive yourself into the ground. You know who the group of people most likely to recover are? Those who rest.

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2 thoughts on “On the various miracle ‘cures’ for ME/ CFS

  1. Great post! I believe in pacing, pacing, pacing, resting, resting, resting, eating as well as we can, avoiding food intolerances.. after that… who knows what’s best. I too was told about those friend of a friend scenarios and had to smile and nod and ignore the puzzled looks when I declined visiting some lady in a ditch with a secret potion!

    Like

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