Hi,
Firstly thank you for reading this post on my blog. I fully appreciate you have taken the time to do so as I understand how precious time is to us. My name is Jen and I have M.E/CFS and Fibromyalgia. I live in Scotland, UK and I'm 42 years old. I was diagnosed last year but like most of us it took many years for diagnosis. When I was first diagnosed I knew nothing of M.E and like many I researched and was absolutely distraught to find that we have been so neglected by our governments in support, care and funding for research, I felt totally hopeless and in so much pain. I felt I lost my old life and now my new life was living in this permanent excruciating nightmare. It breaks my heart that children suffer with this disease also. I have decided that in a good hour or day then I will try to raise awareness and focus on this and help as much as I possibly can. I have writtent to sky news, BBC news and CNN. I decided to do this when Norway apologised publicly to their M.E patients regarding their neglect in care and support. I feel Norway has opened the door slightly and we must not allow it to shut again, we must try to open it further worldwide. We need a platform and worldwide and I pray and hope one day someone, somewhere will give us this opportunity and the governments will be seen for the abuse they have given to us. It is time for people to be aware just how much the governments have neglected this illness in terms of research, funding, care, support and awareness and also how this disease is spreading. I don't want another 17 million children, women and men to be affected by this disease before anyone ever listens, they need to listen now that we so need their help and their voice and ask why.
I posted an audio file also on CNN as they would only accept this type of format to post, so far it has 367 views and been shared 47 times. However, it needs to be viewed so much more so the CNN staticians are then made aware of it and hopefully then they choose to research this further and give us a larger platform to be heard. Norway has opened the door, I feel this is a rare opportunity for awareness on a larger scale, please help us to be heard and please click and share the link that is posted on the CNN website, comment also if you feel you want to on the post in CNN. Our voices can be our weapons and more voices will be heard. Below is the link to the CNN post and also what I wrote. Thanks in advance to all the M.E/CFS soldiers for your support. God bless. x
CNN POST and LINK
http://ireport.cnn.com/docs/DOC-693784
I am a M.E patient who suffers from a chronic and cruel disease, this disease will not go away and neither will my severe pain. 17 Million people suffer from this illness worldwide and the number is growing but so many people and the medical profession know nothing much about it. Remember Aids and the story that followed from that when it was first covered. Then please help us in covering news on M.E. Norway has just released a public health apology from their government apologising to M.E patients, here is a quote from it "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." M.E is a horrendous illness every day your body is in so much pain and you feel that you are dying every single moment of each day and it just never goes away. There is no funding, hardly any research therefore there are hardly any specialists to help and care for anyone with M.E. This disease has been said by a doctor who has researched M.E that a person with M.E feels like a person who is dying from Aids or with cancer a month before they die.
Can you imagine living your life daily in that level of pain, can you imagine a child suffering like this. This disease is spreading and for some reason the governments want this kept quiet including UK Government. I ask why? Maybe the news should ask why? You have the platform and you have a story, please help us to end this suffering, please.
Here is a links to Norway's news about a breakthrough they have found for M.E and then next a link for their governments public apology to their M.E patients for their lack of care.
http://www.tv2.no/nyheter/innenriks/...t-3615866.html
http://www.euro-me.org/news-Q42011-003.htm
Thanks you for your time in reading this message. I live in hope and prayer along with 17 million women, men and children that someone somewhere will help us.
Kind Regards
Jen xox
Firstly thank you for reading this post on my blog. I fully appreciate you have taken the time to do so as I understand how precious time is to us. My name is Jen and I have M.E/CFS and Fibromyalgia. I live in Scotland, UK and I'm 42 years old. I was diagnosed last year but like most of us it took many years for diagnosis. When I was first diagnosed I knew nothing of M.E and like many I researched and was absolutely distraught to find that we have been so neglected by our governments in support, care and funding for research, I felt totally hopeless and in so much pain. I felt I lost my old life and now my new life was living in this permanent excruciating nightmare. It breaks my heart that children suffer with this disease also. I have decided that in a good hour or day then I will try to raise awareness and focus on this and help as much as I possibly can. I have writtent to sky news, BBC news and CNN. I decided to do this when Norway apologised publicly to their M.E patients regarding their neglect in care and support. I feel Norway has opened the door slightly and we must not allow it to shut again, we must try to open it further worldwide. We need a platform and worldwide and I pray and hope one day someone, somewhere will give us this opportunity and the governments will be seen for the abuse they have given to us. It is time for people to be aware just how much the governments have neglected this illness in terms of research, funding, care, support and awareness and also how this disease is spreading. I don't want another 17 million children, women and men to be affected by this disease before anyone ever listens, they need to listen now that we so need their help and their voice and ask why.
I posted an audio file also on CNN as they would only accept this type of format to post, so far it has 367 views and been shared 47 times. However, it needs to be viewed so much more so the CNN staticians are then made aware of it and hopefully then they choose to research this further and give us a larger platform to be heard. Norway has opened the door, I feel this is a rare opportunity for awareness on a larger scale, please help us to be heard and please click and share the link that is posted on the CNN website, comment also if you feel you want to on the post in CNN. Our voices can be our weapons and more voices will be heard. Below is the link to the CNN post and also what I wrote. Thanks in advance to all the M.E/CFS soldiers for your support. God bless. x
CNN POST and LINK
http://ireport.cnn.com/docs/DOC-693784
I am a M.E patient who suffers from a chronic and cruel disease, this disease will not go away and neither will my severe pain. 17 Million people suffer from this illness worldwide and the number is growing but so many people and the medical profession know nothing much about it. Remember Aids and the story that followed from that when it was first covered. Then please help us in covering news on M.E. Norway has just released a public health apology from their government apologising to M.E patients, here is a quote from it "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." M.E is a horrendous illness every day your body is in so much pain and you feel that you are dying every single moment of each day and it just never goes away. There is no funding, hardly any research therefore there are hardly any specialists to help and care for anyone with M.E. This disease has been said by a doctor who has researched M.E that a person with M.E feels like a person who is dying from Aids or with cancer a month before they die.
Can you imagine living your life daily in that level of pain, can you imagine a child suffering like this. This disease is spreading and for some reason the governments want this kept quiet including UK Government. I ask why? Maybe the news should ask why? You have the platform and you have a story, please help us to end this suffering, please.
Here is a links to Norway's news about a breakthrough they have found for M.E and then next a link for their governments public apology to their M.E patients for their lack of care.
http://www.tv2.no/nyheter/innenriks/...t-3615866.html
http://www.euro-me.org/news-Q42011-003.htm
Thanks you for your time in reading this message. I live in hope and prayer along with 17 million women, men and children that someone somewhere will help us.
Kind Regards
Jen xox
