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
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Holly E. Mullin said:
Very, interesting Jade. I would like to know what treatments, in any, you find are helpful to you. As a close friend thinks he may have been living with it for about 15yrs. Many Thanks. Holly
Hello Holly, I’m sorry to hear that your close friend thinks that he may have been living with it for 15 years. His first port of call should be to see a sympathetic G.P.who can refer him to a health professional who can appropriately assess and diagnose whether he has the chronic condition. A qualified Perrin Technique Practitioner could diagnose his condition and offer a prognosis. However, I feel sure that there are other people who have experience to make an informed assessment.
As you know, certainly in the UK, it is still a post code lottery as to whether you have access locally to an appropriate practitioner. When your friend has established whether he is experiencing CFS/ME or not then he will be able to make informed choices in terms of his own future health and well-being.
Maybe your friend, if appropriate; may wish to access this site or another of his choosing sometime in the future to find out more about what he can do for himself. The first empowering action for people who have this condition is to take control of their own health and well-being. Kind regards Cass
This is a wise and empowering post, Cass. Thank you! When I ws diagnosed in 1988 with CFS here in the US, I was told there was nothing that could be done, and that I would have to go on disability very soon. I happened to change doctors, and my new doctor said he did not believe in CFS, it was “in my head.” I won;t go into what that DID to my head, but, suffice it to say, I believe that ignorance of the condition in the medical community is one of the great barriers. At the same time, as you so beautifully point out, it allows those who have the condition to network and empower ourselves and to share our strategies. Stepping away from the sircus is a great way of putting it! I am excited to hear about your work on the “toxic soup” within your body – I happen to agree that we can learn to take care of ourselves, that it is possible, and that it is hard work.
Hi peacefulamazon thank you for leaving your thoughts; it is encouraging to know that you found this article empowering and that you resonated with the concept; it can be a bit of a circus within mainstream life never mind within this chronic dis-ease arena.
1988 that is a long haul; have you made any headway in terms of your own health and well-being or are you ‘managing’ life on the face of it?
Yes, toxic soup, for me, has been an interesting one; I will be going into that in more detail over the coming weeks. Many people find themselves treading 20+ years swamp water.
Where did you see the link to this site peacefulamazon and are you following foxleytowers to enable post/page notifications?
I look forward to sharing thoughts with you, kind regards Cass