19. ... and signing back on again ...

Signing off was meant to be my final blogpost. Thought blogging was not for me. But it seems I have more to say ...

Rabbi Julia Neuberger did Thought for the Day on Chris Evans breakfast show this week. She mentioned that in the book of Kings in Old Testament it was written that lepers sat on the outskirts of a city and they talked together about the hardships of their illness and their lives. She stressed the importance of sharing and speaking together in support of each other especially during difficult times.

People with ME do just this type of sharing on FB, Twitter and on ME Charity websites. The Internet makes it easier to find people sharing the same interests, hardships or sometimes even the same sense of humour.

How strange it is then to find the PACE trial authors suggesting that there is something sinister in ME sufferers sharing feelings, info and humour on various means of social media; we are it seems trying to sabotage their trial through our improper discussion. No, no, no ... our discussions are the modern day equivalent of my grandmother, who was born in the fading years of Queen Victoria's reign, standing on the street corner discussing the sinking of the Titanic or the lepers of the Old Testament sharing their woes outside the city walls.

I've never known a patient group so criticised, so judged as ME sufferers - tho' I'm sure the lepers of Old Testament days and more recently were criticised, judged and shunned. Our motive we are told is to cause upset to poor researchers who have done us the great favour of researching our ailment. They don't need to do it for us you know! 

I can speak for myself - and I'm sure others will join me - in saying that our motives are to get support from others who feel the same as we do - outcasts from mainstream medicine. We sit like lepers on the outskirts of society. UK researchers and newspaper reporters, even educated health correspondents are gleeful in praising books such as Suzanne O'Sullivan's All In the Head, the likes of which which influence people's views on our illness and move us further away from the city gates than the lepers were in Old Testament times. 

A hand shake and genuine interest from now-Scottish MP, Daniel Johnson and Ian Murray, Scotland's only Labour MP in Westminster helped me feel more part of Edinburgh's bustling Bruntsfield life on the morning of the election, when I spoke to them about how ME is devastating lives and about the ME awareness drop-in at Westminster on the 11 May.