International, pharmaceutically led medical circles have debated the existence of Myalgic Encephalopathy/Chronic Fatigue Syndrome and those who now acknowledge it still cannot agree whether the condition is of physical or mental health origin.
There are still ongoing disagreements and heated debates between; some mainstream professionals, some alternative treatment professionals and some representative organisations in relation to the root cause of the disease and how best to approach and treat the condition. Although, it seems socially more readily accepted, some still question whether it exists at all.
Unfortunately, some one-sided and potentially negative media articles have been published in relation to the possible root causes, particularly from a mental health perspective, have justifiably caused great distress to many empathetic readers and their carers over many years.
There are some long-term sufferers understandably who admirably debate and defend the cause voicing the quality of life impact of their condition. They vehemently express their concerns about, in their view, a mostly still misguided social perception of the condition.
Discussions about for instance; evidence based research findings, relentless searching for the existence of a specific and identifiable virus and even the name of the disease can in some arenas develop into a circus of less meaningful and sometimes unhelpful arguments. Overall there seems to be a little more about pioneering and a little less about collective care.
In the meantime, in 2013 in the real world there are for example; the National Health Service estimate 250,000 people in the UK and ME/CFS Society NSW suggest a conservative estimate of 1 in 2,500 have the condition in Australia. The disease cuts across all age groups, ethnic and socio-economic backgrounds worldwide and either in isolation or along with their carers have to somehow cope with this characteristically unpredictable and potentially overwhelming dis-ease, on a daily basis.
Not surprisingly there are increasing numbers of people using the Internet and particularly social networking; some people with ME/CFS even challenge and compete with other people with ME/CFS in relation to how long they have been diseased, latest research findings and drug trial outcomes.
People respond in many ways to this chronic condition. The one thing that most empathetic and sympathetic people would agree is that it is life stopping and the most common things that empathetic people say are; they have tried everything, they have been near to loosing everything and they have spent a considerable amount of money on various alternative or complimentary treatments.
Some may take a gung-ho and relentless journey to find a cure; chasing advertised quick fix energy giving super health products, sign up to pharmaceutical drug trials, take claimed miracle supplements, stress busters and a whole raft of seeming ‘so many weeks’ short-cut promises to abundant health. I can’t help wondering how much this taps into feelings of desperation to get better, for some chronic diseased individuals. This approach often comes heftily priced.
In my view, there is no such thing as a cure for any disease; this chronic disease is not an exception to the rule. To chase cures or wait for a cure can be time consuming and ironically be energy sapping; often leading to unrealistic expectations, disappointment, great financial cost and more stress.
Others might intensely focus on physical exercise and some also take supplements and body building products as if to somehow try to force their whole body to re-energise and perform like a formula one racing car or just to feel the buzz of something that resembles energy to enable them to do one activity; only to crash and burn over and over again.
Many people eventually try to lead an ‘on the face of it’ normal life, over many years, within their overall ability regardless of their condition; making little or no change to their lifestyle choices. Somehow ‘plodding on’ emerging on ‘good days’ but from a health and well-being perspective they remain in an often subtly deteriorating diseased state.
Just over seven years ago and following a ‘penny drop’ experience I chose to take responsibility for my own health and well-being. I chose an alternative treatment path; a holistic approach, an attempt to enable my body to do what it is potentially able to do, heal itself.
Admittedly, it has been challenging. I have made many mistakes sometimes repeatedly, most could have been avoided. I tried to walk before I could crawl only to metaphorically fall down firmly on my butt!
Accepting that I had a chronic condition was for me less challenging than learning how to respond to chronic fatigue. Dis-ease for 14 years had not surprisingly become deep-rooted and it would take time to peel back the onion. My whole body had metaphorically become a toxic soup it would need careful handling and patience with self, this I realised was the challenge.
Taking a less travelled road has made all the difference to; the effectiveness and my potential recovery in the long-term. For me, it has been and continues to be empowering, liberating and exciting.
I wish to achieve my optimum health and so choose to steer away from heated arenas; staying away from negativity and drama as much as possible. Instinctively, I know that physical, mental, emotional and spiritual balance is the key to my own recovery. I value the quality of my life more than trying to get my voice heard only to find myself probably entrenched in conflicting views.
It might be worth considering avoiding the circus that surrounds this controversial condition; shifting the focus to yourself, empowering yourself to make choices that will potentially improve your prognosis. Not in an isolated or detached way but in a more mindful and compassionate way. The longer you have the condition the more complex it might become; it isn’t about what we experience it is how we respond that is life changing. This is about listening more to your body instead of listening solely to your mind; helping you to reach your personal optimum health, if the time is right for you.
No one saves us but ourselves. No one can and no one may. We must walk the path. Buddha
Editor: Cass Jade Foxley 20 September 2013 – Image: http://www.protozoid.com
[Short articles will be published quarterly from this website, which to some degree, will be subject guided by ‘followers of foxleytowers’. Followers can opt for being notified via email when articles are published on FoxleyTowers. To receive articles please subscribe free by giving your email address in the box provided on this website, where the box is will vary according to whether you are on an e.g. laptop, i-Pad or iPhone.]