On Thursday 20 November I met with Julian Sturdy MP at my home in York. He had responded very quickly to my request for help in raising ME Awareness.
I had explained my aim of raising awareness in my local area to ensure sufferers had somewhere to go and someone to contact when in need through the website at www.York-ME-Community.org Also my wish to bring local businesses on board to spread the word through staff meetings, taking ME up as their adopted charity and other ideas that I thought were relevant.
We discussed the A – Z of ME as seen through my eyes, and what my energy and brain would allow me to spill out in the time available. He wasn’t putting a limit on the discussion time, but my condition was !
He left my home with the aim of looking further into the condition, including the PACE situation. He will also discuss the matter with two other York MPs, Kevin Hollinrake, MP for Thirsk and Malton who I have already been in touch with and Rachel Maskill, the York Central MP.
As we covered all areas of the subject, locally, nationally and internationally, it was quite an exhausting hour and he recognised the problems this illness caused just due to the times I had to stop to get by breath back. He understood my background of being someone who has always worked hard, having left school to work at the age of 13, and hadn’t stopped till ME put the brakes on. This was explained so that he understood that we as a group are so often wrongly labelled as being lazy. He therefore understood my frustration of the treatment, or lack of it we can get from GPs who either find it daunting to deal with and just issue anti-depressants, or actually don’t believe in it at all. He stated to me in my home that he will discuss with the Minister of Health about ME Training for GPs.
He will be adding a section to his own website about our discussion, and will be linking to our ME site. I will be keeping in touch with him, as he has asked me to do about all things ME, and I will pass on any updates I get.