ME and CFS - is one more real than the other?
Part 2 of Trusadh, the Gaelic programme about ME/CFS was on BBC Alba last night, and can be watched on BBC iPlayer here - http://www.bbc.co.uk/programmes/b01b1z0l - for the next week or so, maybe longer. If I find a YouTube upload for it, I'll leave a link in the comments for those outwith the UK.
Sometime soon I'll write more about how Mickel Therapy has managed to improve the quality of my life where other things have failed.
However, during the past week or so, following the first programme, I've become more aware of the debates within the ME/CFS communities, and some of the hostile attitudes towards Mickel Therapy. What I wasn't quite prepared for was the strongly held opinion by some that ME is a real illness but CFS somehow is not.
When I was approached to be in the programme - Trusadh, on BBC Alba - about ME/CFS (see ME, me and Gaelic TV), I was told Mickel Therapy is controversial – that it is not accepted as a valid treatment by either the NHS or the ME Association, but there is a lot of anecdotal evidence with plenty of people claiming significant levels of improvement or even complete cure.
When I looked up Mickel Therapy online, there were many prepared to say Dr Mickel was just a money-making charlatan and that at best, those who recovered were probably responding to some kind of placebo effect.
And I have to say, when I read Dr Mickel’s book, I wasn’t overly reassured – some of the concepts are poorly explained and it can sound at times like it’s bordering on some kind of mystical practice.
Having been through the therapy sessions, I can happily say there is nothing mystical about it. It doesn’t require leaps of faith, dodgy beliefs, pills, potions, magical symbols or crystals being placed under the pillow.
What it does require is a shift in your narrative – your understanding of how you interact with your thoughts and emotions, and changing how you respond to life’s little (and not so little) irritations and upsets.
It comes under the category of “talking therapy”, which distinguishes it from physical or drug-based therapies. For many, however, the idea a set of words could possibly have an impact on a physical ailment sounds like something out of Harry Potter, not the medical world. It seems nonsensical.
But then in our culture, we are often given to believe there is a huge separation between body and mind. One is physical, the other mental and each has its own set of illnesses, which have to be treated physically or psychologically according to which they are.
And yet, how separate are they? Can one not affect the other? Supposing you suffer from shingles, which is made worse when you get stressed – is that a physical or a mental condition? If you can learn techniques to calm your mind so the shingles attacks lessen or disappear, does that mean it wasn’t real, or that it was all in the mind?
The boundaries between body and mind are far less distinct than we generally believe.
But this idea of separation is unquestioned by many, and I think this is what leads to the belief that Mickel Therapy and others like it either it can’t be a “real” treatment, or it can’t possibly work on “real” illnesses – leading to what I have read many people say - if it works, you couldn’t have been properly ill in the first place.
The ignorance, and arrogance, of that position is to my mind the most controversial aspect of it all. It seems there are plenty of people around who wish to place their life-debilitating illness in a hierarchical superior position to other life-debilitating illnesses (my illness is more “real” than yours – or mine is physical, whereas yours is “just” mental).
Within the ME/CFS world, there are many who get upset that ME (Myalgic Encephalomyelitis ) appears to have been “downgraded” to be encompassed under the CFS (Chronic Fatigue Syndrome) banner. This or that study is quoted to show that ME is a separate condition.
Maybe it is, maybe it isn’t. I’m not a doctor or researcher. I use the label CFS or ME (or whatever combination) because that’s the label the doctor gave me. All it ever meant to me was, “We accept you suffer debilitating tiredness, but we don’t know why, or what can be done about it. CBT (Cognitive Behavioural Therapy), GET (Graded Exercise Therapy) and even anti-depressants help some people to varying degrees. We can arrange them for you, but if they don’t work then we don’t have any other answers, so you’ll just have to go away and live with it.”
Maybe I have ME; maybe I have CFS; maybe I have something entirely different. All I do know is the symptoms have been horrible to live with and the idea that they might never ever go away has felt appalling. To have lived nearly 6 years with depleted energy levels, brain fog and virtually no emotional reserves, and with the prospect of no end, has not been fun to say the least.
Now the Mickel Therapy has had a significant effect on me. I might not be 100%, but I am much improved and I now have a system, a path, which is highly likely to improve me further in time and stop me relapsing.
This means, instead of having to write off the rest of my life, I now have hope again.
But I find it astounding, irritating and not a little sad, that there are people who want to say that if Mickel Therapy has worked on me, then somehow I wasn’t really ill, or my illness was “less-than” theirs.
I can fully understand anyone not wanting to be misdiagnosed (I have this condition and you are saying I have that condition and are treating me for that, but it won’t work on this), but doesn’t mean their illness is more “real” than the one they think theirs is being mistaken for, and it is incredibly insulting to say that it is. Yet I frequently seem to come up against this attitude.
I can understand it comes out of frustration, but do they not see the irony in the fact they have fought so hard to say their condition should not be treated as less-than, when they are prepared to dismiss someone else’s condition as such?
It matters not if you have ME, CFS, Depression, OCD, MS, or any other illness – if it is debilitating and impacting on your life, then you deserve help and support. If an illness is devastating your life, then hierarchies about what counts as more important, or more “real” are a nonsense.
Sometime soon I'll write more about how Mickel Therapy has managed to improve the quality of my life where other things have failed.
However, during the past week or so, following the first programme, I've become more aware of the debates within the ME/CFS communities, and some of the hostile attitudes towards Mickel Therapy. What I wasn't quite prepared for was the strongly held opinion by some that ME is a real illness but CFS somehow is not.
When I was approached to be in the programme - Trusadh, on BBC Alba - about ME/CFS (see ME, me and Gaelic TV), I was told Mickel Therapy is controversial – that it is not accepted as a valid treatment by either the NHS or the ME Association, but there is a lot of anecdotal evidence with plenty of people claiming significant levels of improvement or even complete cure.
When I looked up Mickel Therapy online, there were many prepared to say Dr Mickel was just a money-making charlatan and that at best, those who recovered were probably responding to some kind of placebo effect.
And I have to say, when I read Dr Mickel’s book, I wasn’t overly reassured – some of the concepts are poorly explained and it can sound at times like it’s bordering on some kind of mystical practice.
Having been through the therapy sessions, I can happily say there is nothing mystical about it. It doesn’t require leaps of faith, dodgy beliefs, pills, potions, magical symbols or crystals being placed under the pillow.
What it does require is a shift in your narrative – your understanding of how you interact with your thoughts and emotions, and changing how you respond to life’s little (and not so little) irritations and upsets.
It comes under the category of “talking therapy”, which distinguishes it from physical or drug-based therapies. For many, however, the idea a set of words could possibly have an impact on a physical ailment sounds like something out of Harry Potter, not the medical world. It seems nonsensical.
But then in our culture, we are often given to believe there is a huge separation between body and mind. One is physical, the other mental and each has its own set of illnesses, which have to be treated physically or psychologically according to which they are.
And yet, how separate are they? Can one not affect the other? Supposing you suffer from shingles, which is made worse when you get stressed – is that a physical or a mental condition? If you can learn techniques to calm your mind so the shingles attacks lessen or disappear, does that mean it wasn’t real, or that it was all in the mind?
The boundaries between body and mind are far less distinct than we generally believe.
But this idea of separation is unquestioned by many, and I think this is what leads to the belief that Mickel Therapy and others like it either it can’t be a “real” treatment, or it can’t possibly work on “real” illnesses – leading to what I have read many people say - if it works, you couldn’t have been properly ill in the first place.
The ignorance, and arrogance, of that position is to my mind the most controversial aspect of it all. It seems there are plenty of people around who wish to place their life-debilitating illness in a hierarchical superior position to other life-debilitating illnesses (my illness is more “real” than yours – or mine is physical, whereas yours is “just” mental).
Within the ME/CFS world, there are many who get upset that ME (Myalgic Encephalomyelitis ) appears to have been “downgraded” to be encompassed under the CFS (Chronic Fatigue Syndrome) banner. This or that study is quoted to show that ME is a separate condition.
Maybe it is, maybe it isn’t. I’m not a doctor or researcher. I use the label CFS or ME (or whatever combination) because that’s the label the doctor gave me. All it ever meant to me was, “We accept you suffer debilitating tiredness, but we don’t know why, or what can be done about it. CBT (Cognitive Behavioural Therapy), GET (Graded Exercise Therapy) and even anti-depressants help some people to varying degrees. We can arrange them for you, but if they don’t work then we don’t have any other answers, so you’ll just have to go away and live with it.”
Maybe I have ME; maybe I have CFS; maybe I have something entirely different. All I do know is the symptoms have been horrible to live with and the idea that they might never ever go away has felt appalling. To have lived nearly 6 years with depleted energy levels, brain fog and virtually no emotional reserves, and with the prospect of no end, has not been fun to say the least.
Now the Mickel Therapy has had a significant effect on me. I might not be 100%, but I am much improved and I now have a system, a path, which is highly likely to improve me further in time and stop me relapsing.
This means, instead of having to write off the rest of my life, I now have hope again.
But I find it astounding, irritating and not a little sad, that there are people who want to say that if Mickel Therapy has worked on me, then somehow I wasn’t really ill, or my illness was “less-than” theirs.
I can fully understand anyone not wanting to be misdiagnosed (I have this condition and you are saying I have that condition and are treating me for that, but it won’t work on this), but doesn’t mean their illness is more “real” than the one they think theirs is being mistaken for, and it is incredibly insulting to say that it is. Yet I frequently seem to come up against this attitude.
I can understand it comes out of frustration, but do they not see the irony in the fact they have fought so hard to say their condition should not be treated as less-than, when they are prepared to dismiss someone else’s condition as such?
It matters not if you have ME, CFS, Depression, OCD, MS, or any other illness – if it is debilitating and impacting on your life, then you deserve help and support. If an illness is devastating your life, then hierarchies about what counts as more important, or more “real” are a nonsense.
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