Let’s Get Physical.

As illnesses go, M.E. has not had the easiest rite of passage. In some respects it has stayed as an awkward adolescent struggling to secure its adult identity.

There are so many unknowns with this illness. In reality it is an umbrella diagnosis for a whole range of symptoms. There is not a single test (although this could change soon) you can have to diagnose M.E. – it is invariably a diagnosis of exclusion. There is no conventional treatment. And it can also - controversially - often be labelled as a psychological illness despite its many, sometimes severe, physical symptoms.

But there is something very interesting going on at the moment. Firstly, there is evidence of a virus - XMRV - present in M.E. patients (see Beginners Guide to XMRV!) which goes someway to secure its identity as a physical illness. Secondly, as of yesterday, there is a UK ban on blood donation for people with M.E. (although this is controversially not being linked to XMRV.)

Currently in the UK, M.E. struggles to achieve recognition as a serious physical illness by the medical profession. If you are diagnosed with M.E. the primary treatment offered is Cognitive Behavioural Therapy. But if it’s all in our heads why can’t we give blood?!

I generally don’t get involved with the fight for M.E. to be recognised as a physical illness. Maybe I should. I have been ill with this ‘mysterious’ illness for a long time. But we all have our own way with dealing with our situations. And for me, once I knew there was no conventional treatment, I didn’t get angry, I got creative. In typical ‘Type A’ fashion I wanted to take control, put a plan of attack together, determined to fight the M.E. Monster.

This has led me down a very colourful road of alternative treatments. (You can try A LOT of treatments in 6 years!) I have always embraced the physical and the psychological component of this illness - believing the mind and the body are inextricably linked. This doesn’t mean that I don’t believe M.E. is real. (I live with it every day. I am very aware of how real it is.) But I believe in a holistic approach to recovery.

But others are less accepting of the way in which those with M.E. are treated – or not treated – and fight tirelessly to have M.E. recognised as a physical illness and to have money invested into biomedical research.

And if I am honest, I have always been nervous of becoming too involved in the M.E. campaigning community: I worry that if I spend too much time engrossed in talking about M.E. it will in some way make me identify with M.E. even more. The mind is a clever and complicated place and I don’t want mine thinking about M.E. more than it already does.

And perhaps more importantly, I don’t want my mind overloaded with stories about how hard it is to recover from this illness. I want to maintain my belief that I can get better - people do get better from M.E. and I fully intend to be one of them. I appreciate that what I’m saying may make me sound unsympathetic to the plight of those with M.E. But actually I feel a huge amount of compassion. My heart goes out to those people who are affected by this illness – especially the people who are so seriously affected that they have been house bound or bed bound for many years. But I choose to deal with my situation in a way which feels right for me. I know this is very selfish; I am after all completely focused on my own recovery not that of the greater M.E. community.

Then why does this girl blog about it all then, I hear you ask?! And I do worry that by writing about it I am giving the M.E. fire more oxygen. But I love writing and in writing about my life I have found, whether I like it or not, M.E. still features highly.

But despite all of this, I am in awe of the people that I have come across in the M.E. community who use their VERY precious energy on campaigning, those who are far less selfish than I am. In fact some amazing and inspiring people (despite their own significant health challenges) demonstrated in London yesterday against the blood ban.

And it fascinates me that people in very similar situations make such different choices about how to handle that situation. (I also recognise that I am one of the lucky ones. I have had glimpses at normal life. And maybe if I had been bed ridden by this illness I would feel differently.)

And as I process my thinking on this whole debate, I was thinking about XMRV. If you’d asked me a couple of months ago I would have said XMRV is not relevant to me. I was that confident that I was on the road to recovery that I didn’t need the test. However, the M.E. Monster has been stalking me again over the last couple of months, so maybe I am wrong to be so disinterested.

But if I did test positive what could be done? There would still not be a treatment option available. And I doubt it would change how I feel about embracing the psychological component of recovery; I would still feel I should do everything within my power to get better.

But then I realised this is the point. If I had another type of illness I would expect a diagnosis followed by treatment, I think all of us would

So whilst I carry on being a selfish cow focusing on my own recovery and being a self obsessed blog chick, I want to give kudos to those that are campaigning to get the treatment they so rightly deserve. And I will watch with interest as the story unfolds.

Presumably, at some point someone is going to realise it is complete nonsense to say: You can’t give blood because M.E. is all in your head! And M.E. may actually achieve its rite of passage into adulthood.

How do you deal with challenges in your own life: M.E. or otherwise? Do you get angry? Are you a campaigner? Or are you a selfish cow like me?! Would love to hear your thoughts.


For more information about the blood ban and XMRV see:

ME Information
The ME Chat Room
Invest In ME
XMRV Press Releases