Sunday, 5 June 2011

Where Dreams Go To Die

I was asked on a forum what had become of my previous 'dream' of providing a comprehensive manual for others with M.E.

It's a subject I have largely avoided discussing with anyone other than my closest friends lately because I felt a sting of embarrassment at my own initial enthusiasm and subsequent silence. I am a perfectionist by nature and don't cope well with failure.

However, I am presently engaged with some pretty heavy work surrounding my own existence. This has led me to a more peaceful place, a place where I can more readily embrace the uncertainties of life and the uncertainties of M.E. It has led to some 'brave' but scary discussions. Some with others, such as officially ending a 7 year relationship, and some with myself about how I cope (or don't) with being unable to always control and fix everything.

So, I think it's healthy I share my response to that forum post here. My embarrassment and guilt about not being able to follow through on my initial plans are now more tempered by realism and a focus upon getting myself in a good place spiritually before I try to work out how best I can be of service to others.

Hindsight is wonderful, as we all know. More importantly, experience is valuable if we keep learning from it.

I think I was the epitome of a relatively newly-diagnosed person who had never really encountered a situation as unexplained as M.E. before. I, rather naively, felt that there must be a way to beat this through brainpower, research and determination. Being skilled at running before I learn to walk, lol, I also decided I must do something for the greater good. I must channel what energy I had into helping others.

Looking back, this was misguided, although well-intentioned. Greater minds than mine have been wrestling with the puzzle of M.E. for many years and it now seems a little foolish to consider I was going to avoid being a statistic and get well again through my own abilities. A very wise friend of mine said to me recently that I would benefit from "stopping being a knower and becoming a learner" - this is sage counsel indeed.

I still have an ambition to do something of real value for others. I just have to be more realistic about how I can best utilize what skills and energies I possess. But yes, my focus has had to shift a little from the community to myself. Not because I have become more ill or because I have become more selfish but because I now realise that I was avoiding dealing with my own lack of control over this illness. Coming to terms with the fact I cannot cure myself and there is no missing formula that everyone else has missed all these years is difficult psychologically.

The past year has been a rollercoaster of emotions for me. I have sulked, I have mourned, I have raged, I have argued, I have spoken my mind when my thoughts still weren't clear and I have argued with and upset people I care about. So much of this seems tied to my own need to accept 'what is' without giving up hope for the future. I am therefore working a lot more on my spirit and considering the more philosophical approaches to dealing with illness.

Wednesday, 1 June 2011

Boring Science Stuff or Political Intrigue?

I am an absolute dimwit when it comes to science. With that disclaimer out of the way, let's talk about science.

The only one story in town right now for the M.E. community is that Science journal asked Lombardi et al to retract their seminal paper on XMRV and the potential link to M.E. The journal also published and Editorial Expression of Concern. Thankfully, Lombardi et al have categorically refused to retract.

Did I mention I was a dimwit when it comes to science? Never hurts to re-emphasise the point. However, even this dimwit can see the absolute logic in what Dr Deckoff-Jones had to say HERE:
"It can't be both a contaminant and not there at the same time. Which is it?"


You can read Dr Deckoff-Jones' frank and unflinching views on what's going on in the link I posted above. As always, she shoots from the hip and doesn't mince her words. I admire that.

For a while I've had the dilemma of which organisation to support with donations and who to root for in terms of hopefully one day finding a cure so we can all have our lives back. This has now become irrelevant for me. It is no longer about whether the WPI are our saviours or whether XMRV will be the big breakthrough that leads to meaningful treatment. It is about the little guys with good intentions being bullied by the powerful.

The consequences of the WPI being 'taken out' are significant. This goes way beyond the money Annette Whittemore has ploughed into the Institute and it goes way beyond our illness. Even this dimwit knows that science is full of cases where the original discoverer is discredited and marginalised to allow someone else to end up taking the credit (and making the money!) for the discovery. I believe this is what we are witnessing here.

All of this makes me all the more determined to support the WPI. Whether they can cure me or not, this has become a matter of principle too great to ignore. I hope others feel the same way.