International ME Awareness Day 2010

The last few years my life has changed a lot. Since my parents died in 1997 we have had to battle with legal stuff, but the end is possibly in sight now over all that.

We completed buying a new (to us) house in December 2009, and the plans for an extension have just gone in to the City Planners. Meanwhile we are trying to get to grips with what was once a beautiful garden, but was very overgrown and wild with brambles and ivy. We are fortunate to be able to still live in our old home while the renovation and extension work is going on. I really don't think I could have taken on a project like this otherwise.

But the biggest change happened just two days ago on 10th May. Our younger daughter gave birth to twin boys. Yesterday we saw them for the first time - two tiny little babies. Our grandsons.

So I am thinking at this time of all of those people with ME/CFS who have not had children themselves, and so are deprived of the happiness that I have right now.

Most of what is written about ME/CFS research seems to be about getting folks back to work, coping, blah blah. But I don't recall seeing much (anything?) about the loss of personal lives.

I was lucky in that I already had my two daughters when I became ill.

After returning to the work place part time back in 1988, I became ill in March 1992. I missed a lot of my girls growing up, they had to help me rather then me helping them. But they have stuck by me, and have always helped as much as possible, both were godsends during my parents' decline and final illnesses.

But I know of so many people with this DD (Damned Disease) who live alone, who cannot get out to meet with potential partners and friends, who have to face the possibility of never sharing their lives with anyone.

Meanwhile we are all left with clinics run on psycho-social theories that do not address the effects of this illness even in psycho-social terms.

I delight to have the joy of twin grandsons, but I despair that many of my fellow patients will be deprived of this joy in their lives.

It's time the MRC and NICE woke up to the fact that around 250,000 people in the UK are not only lost to the work place, but also are losing out on one of the most important aspects of their lives - their family lives.

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