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From Lindsey Middlemiss

From Lindsey Middlemiss, Co-Founder and former Chair of FibroAction

‘’I developed Fibro in 2002, when I was 21, following a whiplash injury, infection and period of stress. It took me some years to get diagnosed and then longer to get any decent treatment, during which time I became disabled and stopped working. Eventually, following private treatment with a physiotherapist, a myofascial release massage therapist and medications from the late Prof John Davies, I got my Fibro under control.

I had been running a local support group and then got involved in supporting the PolkaDotGals Campaign, through which I got to know another young support group leader, Emma Levick. At that time, there seemed to be little focus in the UK on easy access to evidence based information about Fibro - with many sources of online information, including the NHS, being outdated - or on having a positive attitude that treatments could make a difference, both of which became key principles for FibroAction.

Emma and I set up FibroAction in 2008, as an incorporated registered charity, with my mum, Sue Quarrie, whose experience as a solicitor was invaluable. We were supported by some generous financial donations and many people gave up their time to help, particularly my husband Simon, who developed the background for our first website. In the early days, FibroAction had very little money but we made it work hard for us by concentrating on using online means of communicating. We rapidly saw changes starting to happen, with sites such as the BBC and then NHS Direct (now NHS Online) updating their info on Fibro following FibroAction's input. We had some exciting times, organised events and developed well received evidence based resources.

For some years, FibroAction was my full-time, unpaid job. I loved doing it and learnt a lot - I highly recommend volunteering as a way of learning job and life skills! My Fibro remained under control with just the occasional short flare. In 2009, I came off all medications in order to start a family and in December 2010, our daughter Zoë was born. I expected to have to restart medications, but my Fibro didn't flare. I have been off medications, with my Fibro in remission, ever since.

When Zoë was one, I knew I wanted to do something different, and I trained as a breastfeeding peer supporter and a doula - someone who offers continuous emotional and practical support to women and families through pregnancy, birth and the immediate postnatal period, as well as flexible emotional and practical support in the home postnatally.

A substantial legacy to FibroAction enabled us to hire a Chief Executive, Ella Vine, who has been running the organisation, with the help of Emma Jefferies, FibroAction's voluntary administrator, since 2013.

Our son, Xander was born in June 2013, and I'm now working as a birth and postnatal doula, working for the national organisation Doula UK and training as a breastfeeding counsellor. Life is busy and happy and my health is good, though I'm very aware of the possibility of Fibro coming back when I get run down or ill.

I'm delighted that FibroAction and FMA UK are joining forces to better help more people in future. Although I am stepping down as a trustee, I will still be around as my husband Simon is continuing on as a trustee of the new organisation. I wish the new Board, chief executive Ella and all the volunteers the best for the times ahead.’’

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