Thursday 21 May 2009
Friday 15 May 2009
Also
Also cheers me up when I get an email from a stranger - who has severe ME - thanking me for 'speaking out with courage and integrity'.
Wednesday 13 May 2009
Apparently I am a 'militant ME politico', probably mad...
Lovely. I woke up to find myself described as 'a militant ME politico', and suggestions that I am mad'.
An opportunist who just wants to plug her book.
All because I had left a comment on a Facebook site, supporting a young man with ME who has been sectioned. I was reluctant to blog about Brian until I knew more about the case. Of course I had no idea that my comment of support would be abbreviated and pasted on Dr Crippen's blog the next day in an attempt to misrepresent me.
Thanks to those of you who alerted me.
My original comment on the Facebook site was:
I have just read about Brian Nicholson on a friend's blog. This is APPALLING and INHUMANE. Where can I read more about Brian's plight? What more can we do to support him?... I continue to be disgusted and horrified at the 'delusional beliefs' of certain medics that ME is not a neurological illness. Are we all to be sent to a metaphorical Guantanamo??? I am so very weary of this culture of non-belief. I have had virally-induced ME for 25 years, I am the author of 'The State of Me', a novel about a young woman with ME.
Abbreviated by Dr Crippen to:
This is APPALLING and INHUMANE. Where can I read more about Brian's plight? What more can we do to support him? I have had virally-induced ME for 25 years, I am the author of 'The State of Me', a novel about a young woman with ME.
Dr Crippen says of the Brian situation: ...a golden opportunity for the ME politicos, Nasim is in already, plugging her book... It's a shame. Brian Nicholoson's best interests will not be served by this blinkered, agit-prop, self-publicising lunacy... It is an even bigger shame that the activities of people like Teacher/nurse and Nasim and Andrea only end up in all ME sufferers being labelled as mad.
This offends me in the extreme.
And if I mention my book in an ME commentary thread it is because it gives me a sense of 'status' and credibility in the face of so many years of crap and disbelief - why should I not? Dr Crippen blogs and comments as a doctor and that gives him status. I blog and comment as someone who has had ME for 25 years, and the author of The State of Me. What is the difference? I have left a response on his blog, but I was unsure whether to bother. It's all so exhausting and unpleasant to be in these bizarre firing squads.
Greenwords' words of yesterday could not be more apt.
Update* Dr Crippen has since commented below. For those who don't know, he has in the past been pretty hostile about ME sufferers, but these days, persuaded by the many emails he has received, concedes 'some of us are physically ill'. His preoccupation seems to be with 'those who are mentally ill, but march under the ME banner'. And 'the militant wing of the ME movement'. Interestingly, Dr Crippen has now bought my book, I truly hope it adds to his understanding of this wretched illness.
Update** Dr Crippen took his blog down in March 2010.
An opportunist who just wants to plug her book.
All because I had left a comment on a Facebook site, supporting a young man with ME who has been sectioned. I was reluctant to blog about Brian until I knew more about the case. Of course I had no idea that my comment of support would be abbreviated and pasted on Dr Crippen's blog the next day in an attempt to misrepresent me.
Thanks to those of you who alerted me.
My original comment on the Facebook site was:
I have just read about Brian Nicholson on a friend's blog. This is APPALLING and INHUMANE. Where can I read more about Brian's plight? What more can we do to support him?... I continue to be disgusted and horrified at the 'delusional beliefs' of certain medics that ME is not a neurological illness. Are we all to be sent to a metaphorical Guantanamo??? I am so very weary of this culture of non-belief. I have had virally-induced ME for 25 years, I am the author of 'The State of Me', a novel about a young woman with ME.
Abbreviated by Dr Crippen to:
This is APPALLING and INHUMANE. Where can I read more about Brian's plight? What more can we do to support him? I have had virally-induced ME for 25 years, I am the author of 'The State of Me', a novel about a young woman with ME.
Dr Crippen says of the Brian situation: ...a golden opportunity for the ME politicos, Nasim is in already, plugging her book... It's a shame. Brian Nicholoson's best interests will not be served by this blinkered, agit-prop, self-publicising lunacy... It is an even bigger shame that the activities of people like Teacher/nurse and Nasim and Andrea only end up in all ME sufferers being labelled as mad.
This offends me in the extreme.
And if I mention my book in an ME commentary thread it is because it gives me a sense of 'status' and credibility in the face of so many years of crap and disbelief - why should I not? Dr Crippen blogs and comments as a doctor and that gives him status. I blog and comment as someone who has had ME for 25 years, and the author of The State of Me. What is the difference? I have left a response on his blog, but I was unsure whether to bother. It's all so exhausting and unpleasant to be in these bizarre firing squads.
Greenwords' words of yesterday could not be more apt.
Update* Dr Crippen has since commented below. For those who don't know, he has in the past been pretty hostile about ME sufferers, but these days, persuaded by the many emails he has received, concedes 'some of us are physically ill'. His preoccupation seems to be with 'those who are mentally ill, but march under the ME banner'. And 'the militant wing of the ME movement'. Interestingly, Dr Crippen has now bought my book, I truly hope it adds to his understanding of this wretched illness.
Update** Dr Crippen took his blog down in March 2010.
Tuesday 12 May 2009
ME Awareness Day
Greenwords has written a brilliant post on ME Awareness Week - today, 12 May, is International ME Day. Her writing is always sophisticated and readable as hell. She finishes by saying:
'People with most other medical conditions are not subject to the controversy and subsequent stigma that people with ME are. It is heartbreaking to be yanked off stage-left by an illness, and then, while learning a new life for oneself, to sit by and watch bizarre medical politics play out across the globe, the outcome of which flows through and trickles into our daily lives, prejudicing and confusing our doctors, bewildering our family and friends, undermining the support we need on so many levels and leaving us to fight for every skerrick of medical and welfare support we do or don’t receive. It’s a travesty'.
'People with most other medical conditions are not subject to the controversy and subsequent stigma that people with ME are. It is heartbreaking to be yanked off stage-left by an illness, and then, while learning a new life for oneself, to sit by and watch bizarre medical politics play out across the globe, the outcome of which flows through and trickles into our daily lives, prejudicing and confusing our doctors, bewildering our family and friends, undermining the support we need on so many levels and leaving us to fight for every skerrick of medical and welfare support we do or don’t receive. It’s a travesty'.
Monday 4 May 2009
MP's review of 'The State of Me'
... I am thrilled to see John Barrett MP mention The State of Me on his blog (date of post May 3, 2009). I emailed John about my book a few weeks ago and he very kindly went out and got himself a copy. I love his comparison to The West Wing: 'takes a little time to get into, but then you get hooked'!
Friday 1 May 2009
Drama
I've been enjoying the law firm drama Damages on BBC 1, but have no idea what is going on, it's ridiculously convoluted.
Simon Wessely is a very dangerous man. I see he's been up to his old tricks again, in the Independent. Interesting that ME doesn't exist in France - I was living in fucking France when I got ill. I'm not surprised he gets hate mail. Personally, I wouldn't waste the stamp.
* Just to add: Of course I do not think hate mail is ever a good idea, but I can understand why people are driven to it, faced with attitudes such as Wessely's. I couldn't sleep last night and was thinking of Elaine Showalter, American academic and charming author of Hystories (1997) - I believe she also got hate mail and death threats for her views on ME and Gulf War Syndrome. I just read she needed an armed guard at a Barnes & Noble reading.
ME does not just wreck one person's life. It irrevocably changes the lives of their families and partners and children. Do the likes of SW and ES have the remotest idea of the damage their ill conceived ideas cause? I don't know how they sleep at night.
Simon Wessely is a very dangerous man. I see he's been up to his old tricks again, in the Independent. Interesting that ME doesn't exist in France - I was living in fucking France when I got ill. I'm not surprised he gets hate mail. Personally, I wouldn't waste the stamp.
* Just to add: Of course I do not think hate mail is ever a good idea, but I can understand why people are driven to it, faced with attitudes such as Wessely's. I couldn't sleep last night and was thinking of Elaine Showalter, American academic and charming author of Hystories (1997) - I believe she also got hate mail and death threats for her views on ME and Gulf War Syndrome. I just read she needed an armed guard at a Barnes & Noble reading.
ME does not just wreck one person's life. It irrevocably changes the lives of their families and partners and children. Do the likes of SW and ES have the remotest idea of the damage their ill conceived ideas cause? I don't know how they sleep at night.
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