Happy ‘After ME/CFS Day’
May 12th was ME/CFS day. Which makes today –
“After ME/CFS Day”.
That deserves its own day of recognition. Celebrating the effort and courage that goes into making ‘after’ ME/CFS possible.
I love that these conditions are getting the attention they deserve – there are after all 60 000 sufferers in Australia.
But there has been a slow and welcome shift of ‘awareness’ since I have been specialising in ME/CFS. Often the awareness campaign is driven by a single purpose – to let the public and health practitioners know that the condition is real even though it is often invisible.
While this campaign is important, there is a far more important campaign that is often lost in that message and that is a message directed to sufferers of ME/CFS –
‘Chronic’ doesn’t mean forever, and so there are things you can do. People do recover.
So it was nice to read this morning in NEWS.COM.AU the positive messages that are now joining the awareness campaign.
Some people have never met anyone who has fully recovered from ME/CFS so these success stories are so important. Frustratingly if you go to major ME/CFS information websites the message about recovery is non-existent with a focus on management. Management is not recovery as I explain in this article.
Public awareness is changing and has changed since I have been working with ME/CFS. Understandings of NEUROPLASTICITY, and the role the brain plays in immune function (Pyscho-neuroimmunolgy); the impact of chronic stress hormones or past trauma on biological function, as well as the changing understanding of the nature of pain and fatigue – these ideas are moving from science to public awareness.
Many years ago I gave a talk to a physiotherapy clinic and no one there had an understanding of NEUROPLASTICITY and its role in Chronic Pain. Last week I got an email from a Grade 6 class doing a project on Neuroplasticity with some really cool questions. Things are changing.
When I first started working in the field, one of the key information sources for sufferers was the various ME/CFS associations websites. The first line on one was “ME/CFS is a serious neurological illness and there is no cure”. This was a primary information source for sufferers and I suggested that this statement was misleading. It promoted acceptance and directed people to the dreaded ‘management’ option. I was accused of spreading false optimism while I believed this message was spreading false pessimism. The site no longer states ‘there is no cure’ and instead reads ‘Many people recover from this illness’. The illness hasn’t changed. It’s still real but the awareness is changing – slowly.
So things can and do change. People can and do change. My goal is to help as many people as I can change their lives while changing the way we view and treat these chronic illnesses.
There is a way to go. But the more people tell their stories of recovery, regardless of the way they got there, the easier it will be for people diagnosed to find their way to recovery.
So thank you to Chris and his story and for all those who tell their personal story. The ripple effects of those conversations or stories are life changing.
So in honour of “International After ME/CFS Day” I thought I would share one of my favourite stories.
My wife’s Recovery – http://iancleary.com/cfs-recovery/
We now know too much to have ‘good management ‘ of Chronic Pain and ME/CFS as the aim. It is about treatment and recovery and we see that is possible regardless of the severity or the length of time – change is possible.
It takes focus and effort but remember……. so does managing the condition.
If you are like others who have unsuccessfully tried so many things before, it’s really worth remembering that management also takes time and energy. In the long run, where is your energy better spent?
Norman Doidge, (Author of the Brain that Changes Itself) spoke recently on ABC Radio National Health Report about neuroplasticity and brain retraining. He commented that is really does take focused work but only for a brief time.
If you would like to know more about the Lightning Process or discuss your situation then feel free to make contact for a free 30 minute consult. EMAIL ME
If you would like to read more people’s stories of recovery go to
Happy Ever After ME/CFS Day!