Do I really have to choose? Is this debate still raging? Does the political dance really help anyone suffering with CFS?
Everytime I poke around a bit to look for what’s happening in the world of CFS I end up uncovering things that make me confused and sad (and angry).
There’s an argument that CFS can be effectively treated with a psychosocial model (graded exercise therapy and cognitive behavourial therapy and preumsably NLP type techniques too). That although the illness is obviously real and physical – that buying into an ME diagnosis sets in place a cycle which is very hard to break. That bad belief systems and coping/management strategies perpetuate the condition and worsen it’s effect.
There’s another argument that CFS is an organic illness caused by (possibly multiple) dysfunction in neurological, immune, endocrine and I forget what else, systems. There are many subset theories beyond this about the nature of the problem and treatment, and indeed whether different patients have differing subsets of biological dsyfunctions.
As a CFS patient I feel I have to choose which to believe. Well I do have to choose, because if I accept an organic ME I have committed the basic number one error according to the psychosocial model.
CFS sufferers have to choose a belief system about their illness.
If I accept my organic illness and come to terms with the chronic nature of my condition I can live within my abilities. I can accept as full and rewarding a life as possible as I am. I set aside unrealistic ambitions and aims – not forever, but they must focusing on trekking across a continent will fight against the acceptance I need to move on living with a chronic debilitating condition.
Yet according to the psychosocial model setting ones mind to live within these limitations is to set a self imposing regime and to set in motion a self fulfilling prophecy. So, if I believe I am getting better, I can be well, I can be rid of my illness – to focus on the big goals – then I will be better.
I can’t do both. I have to choose. I have to choose on faith and belief and personal experience and whom I trust the most.
Being ill is hard enough without a continued debate, an ever lasting push and pull on who is right. Even more so whether I am right or wrong in my own approach.
This doesn’t help anyone. You’re going to have to forgive me if I end up sticking my head in the sand and just getting on with the life I have in front of me – because I can’t keep going through this wringer.
This argument is going to kill me, because it breaks my heart not knowing what to do.
Imagine being diagnosed with cancer and having two theories. You have to choose whether to believe this is a disease caused by a malfunction in cells and taking a treatment like large doses of radiation could cure you. Or to choose to believe that this disease is caused by lifestyle choices and beliefs about yourself, enabling the disease to manifest. That changing your beliefs and lifestyle can reverse the cancer (now some people do believe this). But remember – if you go for the radiation you will be buying into your illness and it will almost impossible to reverse the negative beleif system actually causing the cancer. It will always come back even if it goes to remission. Meanwhile if you choose to change your belief system you risk that if you’re wrong the physical cause of cancer advances untreated.
It’s not a good choice to try and make is it?
I know you can argue that cancer has a proven biomedical diagnostic test. But that’s kind of the point. Just because biomedical markers have not been established for CFS or subsets of CFS doesn’t mean they’re not present. In fact some researchers think they have found these markers but more funding and research is needed.
Let me be clear. I want research. I want proper evidence. I want properly funded biomedical research. I want proper research into all the theory.
I don’t need theory. I need answers.