Today is ME Awareness Day and people with ME everywhere (myself included!) are fighting to get wider recognition and understanding of this debilitating and often devastating condition.
As a strange coincidence I am also writing a chapter on ME for a forthcoming book on longterm conditions. For this chapter I’m particularly interested in finding people who use ‘alternative’ healing approaches for their ME, from the obvious homeopathy and accupuncture, to less conventional alternatives, such as crystal therapy or angel healing.
But what is interesting is that there seems to be quite a lot of animosity amongst ME sufferers towards any suggestion that such healing approaches might be of any benefit to them. It seems that because ME is already often dismissed as ‘all in the mind’ by some people, that many who are diagnosed with ME are then reluctant to subscribe to anything else which is seen as equally ‘non-provable’.
Yet in my mind, does it matter if something has been scientifically validated if it exists or works in the lives of those it affects? By this I mean – I know I have ME and that it affects my life, regardless of how many scientists or medics might try and dismiss it as ‘all in the mind’. As a student of Reiki I also know that when I receive or give myself Reiki healing it energises me and can ease pain. Now I have no idea either what causes my ME, or what it is that is happening when the Reiki relieves me. But I do know that for me, both have very real effects in my life, ragardless of their lack of scientific credibility.
Surely there must be more ME sufferers out there who would agree..?
Hi Sara, me again.
I have read all about ME since I found out you had it, and I feel just as clueless as before I started reading.
Can I ask how does it affect your life, what symptoms do you / did you suffer from specifically? And what led to your being diagnosed?
As for it “being all in the mind” I understand that people mean this in a dismissive way, but the mind / brain / whatever is a part of our physical body and quite an important one at that! So I’m confused about this as well… I suppose this means most ME sufferers would rather pin it down to a biological cause? Rather than a psychological one? When really they are the same thing? Now I’m really confused!!
Anyway I’m glad you’ve found something that helps, and eases pain for you. Pain is all in the mind as well, right? lol.
Hi Bex – people are very different with their experiences of ME. Personally I was ill with glandular fever and basically didn’t get better. I ended up bedridden through exhaustion and pain. I was ill initially for about 2 and a half years, reached a new kind of ‘normality’ (which I realise looking back wasn’t ‘normal’ at all!), then had a another relapse about 5 years later. Even now, more than 20 years after my diagnosis, I have two residual ‘symptoms’ which I put down to the ME – a real sensitivity to sunlight and burning in my legs when I climb stairs to the extent I have to stop and wait for it to go. But I’m extremely lucky, some people never get past the bedridden stage. But that’s a short answer…
In terms of the ‘all in the mind’ – what I think upsets people is that often their very real physical pain and complete exhaustion is dismissed as ‘all in the mind’ and they are told to pull themselves together and get on with it. To the extent that children with ME have been thrown into deep swimming pools to force them to swim and move their muscles – reminiscent of the way witches used to be treated! And that is why sufferers get so upset about the accusation. But as you rightly point out, the mind is a powerful thing and can be trained to make physical changes in the body – even to the extent of inducing physiological changes. So you are absolutely right, it is actually quite impossible to try and draw a distinction. But I think it comes down to the stigma still associated with ‘mental illness’ and the ME sufferers’ total conviction that there is a ‘physical’ cause. A very similar battle happened for people with MS before they pinpinted what was going on physically there – it was said to be a psychological condition, ‘all in the mind’, and I guess ME sufferers are waiting, like MS sufferers had to, for the ’cause’ to be found, the physical changes in the body, which indicate there is something going on in the body and not just the mind. Hope that helps in some way…! 🙂