Daily Mail article: Doctors doubt virus is the root cause of M.E.
Interesting article in a tabloid not always known for its accuracy.
We shall see. XMRV viral link has always been controversial.
At least the media and, more importantly, doctors are now focusing on M.E. in a serious way, which will raise awareness and hopefully move us a step further towards effective treatments and the prospect of a future cure. If medical researchers are motivated to pursue this process of elimination to a positive conclusion, this might still turn out to be good news.
As things stand, however, it is hard to get the celebratory bunting and champagne out, even if we had the energy or the co-ordination, balance and strength to do it!
You don't need to tell us why, any more.
You just need to tell us M.E. will soon be a thing of the past.
Frustratingly, that just seems further away than ever, if this article is to be believed.
Tuesday, 21 June 2011
Wednesday, 15 June 2011
Up awareness, Mr Cameron? Up yours!
While this is primarily a space for those with M.E., for many of us, there are comorbid conditions that affect us at the same time. For me this is Type 1 diabetes. The diabetes, diagnosed when I was 23, masked the M.E. for many years. I blamed my pancreas for all the symptoms I was experiencing until the day I finally collapsed unable to "push on through" for another second after so many years of struggling to keep working and active as my health deteriorated.
Even now, my Diabetes specialists know next to nothing about M.E. and vice versa. When an M.E. specialist insight gets a look in at all, that is.
So this Diabetes Week, I need to post about this.
Diabetes in UK Parliament today
Diabetes has been discussed by the Government today. That surely can't be a bad thing?
But reading the vacuous, uninformed comments of the Prime Minister in response to Diabetes UK's campaign for 2011 Diabetes Week, themed 'Let's talk Diabetes,' leaves me wondering.
We see more and more Diabetes Specialist Nurses (DSN) disappearing with the current funding crisis in the NHS. Along with specialised diabetes education and resource centres that were helping people to tackle their condition in the most productive, enlightened ways.
Without these, we may well be whistling in the dark. Or waiting for the day when our monitoring equipment, so essential in keeping Type 2s in control of their condition, and all the more so for Type 1s to stay clear of coma, complications and death, are deemed a luxury not a lifesaver.
Adrian Sanders, MP for Torbay, asked Mr Cameron if he would support the campaign to get people talking about this illness, still so misunderstood even 90 or so years after Banting and Best pioneered insulin therapy in the 1920s.
The response was telling. And chilling, considering it's 2011.
The Prime Minister was quick to appear in favour of the campaign, saying:
"I think we have to find a way of encouraging more people to come forward and say there’s nothing abnormal or wrong about this."
Within seconds I and many thousands of others were getting the sinking feeling that Mr Cameron had less than no idea that Type 1 and Type 2 diabetes are two completely separate illnesses, one auto-immune and not preventable at present, the other more directly linked to lifestyle.
He plunged in to show that his eye is only on the cost, and much more disappointingly, he is solely fixated on Type 2 issues. Who, Mr Cameron, has ever felt ashamed to talk about their Type 1 Diabetes which is in no way a matter of "lifestyle choice" but genetics? Who exactly do you think you're talking about?
On he ploughed, tilting his head as always in the direction the wind might be blowing at any given moment without any real depth of insight, reinforcing the stereotypes and sowing the old misinformation into the ears of the media and the waiting world:
'We just need to help people manage their diabetes, particularly because we want to see them have control over their healthcare and spend less time in hospitals if at all possible.
So I fully support the campaign and I think we’ve got to look at the long-term costs of people getting diabetes and recognise there’s a big public health agenda, particularly about exercise and other things, that we need to get a hold of.'
I spend no time in hospitals as a direct result of my Type 1 Diabetes, Mr Cameron. I am responsible, like so many others, controlled as well as possible (considering M.E. which regularly hampers all attempts to maintain stable blood sugars). When Type 1s are hospitalised, it is more usually insulin-related, complication fuelled, or sitting in outpatient queues for hours at a time through no fault of our own. NOT as you seem to imply, as a result of sitting on our rears munching doughnuts, dodging salads and avoiding regular exercise.
Step One might be to inform yourself and your ministers of the real issues here: Prioritisation of funding, reflecting the complexities of the illnesses you clump together as diabetes, in much the same cavalier fashion M.E. is shoved under the vague, belittling umbrella of "chronic fatique and all that tiredness nonsense malarkey" (don't get me started, passive aggressive rant alert!)
Diabetes Week UK 2011 is 12th-18th June.
Further information and support available from:
Diabetes UK
Even now, my Diabetes specialists know next to nothing about M.E. and vice versa. When an M.E. specialist insight gets a look in at all, that is.
So this Diabetes Week, I need to post about this.
Diabetes in UK Parliament today
Diabetes has been discussed by the Government today. That surely can't be a bad thing?
But reading the vacuous, uninformed comments of the Prime Minister in response to Diabetes UK's campaign for 2011 Diabetes Week, themed 'Let's talk Diabetes,' leaves me wondering.
We see more and more Diabetes Specialist Nurses (DSN) disappearing with the current funding crisis in the NHS. Along with specialised diabetes education and resource centres that were helping people to tackle their condition in the most productive, enlightened ways.
Without these, we may well be whistling in the dark. Or waiting for the day when our monitoring equipment, so essential in keeping Type 2s in control of their condition, and all the more so for Type 1s to stay clear of coma, complications and death, are deemed a luxury not a lifesaver.
Adrian Sanders, MP for Torbay, asked Mr Cameron if he would support the campaign to get people talking about this illness, still so misunderstood even 90 or so years after Banting and Best pioneered insulin therapy in the 1920s.
The response was telling. And chilling, considering it's 2011.
The Prime Minister was quick to appear in favour of the campaign, saying:
"I think we have to find a way of encouraging more people to come forward and say there’s nothing abnormal or wrong about this."
Within seconds I and many thousands of others were getting the sinking feeling that Mr Cameron had less than no idea that Type 1 and Type 2 diabetes are two completely separate illnesses, one auto-immune and not preventable at present, the other more directly linked to lifestyle.
He plunged in to show that his eye is only on the cost, and much more disappointingly, he is solely fixated on Type 2 issues. Who, Mr Cameron, has ever felt ashamed to talk about their Type 1 Diabetes which is in no way a matter of "lifestyle choice" but genetics? Who exactly do you think you're talking about?
On he ploughed, tilting his head as always in the direction the wind might be blowing at any given moment without any real depth of insight, reinforcing the stereotypes and sowing the old misinformation into the ears of the media and the waiting world:
'We just need to help people manage their diabetes, particularly because we want to see them have control over their healthcare and spend less time in hospitals if at all possible.
So I fully support the campaign and I think we’ve got to look at the long-term costs of people getting diabetes and recognise there’s a big public health agenda, particularly about exercise and other things, that we need to get a hold of.'
I spend no time in hospitals as a direct result of my Type 1 Diabetes, Mr Cameron. I am responsible, like so many others, controlled as well as possible (considering M.E. which regularly hampers all attempts to maintain stable blood sugars). When Type 1s are hospitalised, it is more usually insulin-related, complication fuelled, or sitting in outpatient queues for hours at a time through no fault of our own. NOT as you seem to imply, as a result of sitting on our rears munching doughnuts, dodging salads and avoiding regular exercise.
Step One might be to inform yourself and your ministers of the real issues here: Prioritisation of funding, reflecting the complexities of the illnesses you clump together as diabetes, in much the same cavalier fashion M.E. is shoved under the vague, belittling umbrella of "chronic fatique and all that tiredness nonsense malarkey" (don't get me started, passive aggressive rant alert!)
Diabetes Week UK 2011 is 12th-18th June.
Further information and support available from:
Diabetes UK
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