in your petition is:
jugular veins to allow the free movement of blood to the brain
Free outflow of blood from the brain // is truth /
I think /my english is international
Bringing Liberation to the UK
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SkallyWags
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- Joined: Sun Dec 27, 2009 3:00 pm
To or From
markofc wrote:in your petition is:
jugular veins to allow the free movement of blood to the brain
Free outflow of blood from the brain // is truth /
I think /my english is international
Mark I think you are right. I did not notice and I don't know what can be done about it. Maybe Colm can edit it...
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
petition
Excellent, Colm.
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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SkallyWags
- Getting to Know You...
- Posts: 23
- Joined: Sun Dec 27, 2009 3:00 pm
Crickey I turn my back for a minute and all hell breaks loose!!
This is brilliant guys and exactly the kind of response I was looking for.
I've been somewhat distracted by the progress of my Mum's case with Dr Simka. She had her scans done on the 20th Dec and they came back positive for stenosis. She had her pre-op tests done today in prep for tomorrow and is having angio-plasty and a stent to resolve her issues.
It's been a pretty harrowing time for her over there, the airline lost her mobility trolley and when we tried to get another one out to her, they decided to break that one. This has meant moving around has been a real issue. At the place where she was staying, she had to sleep upstairs making her totally reliant on the help of others just to get around.
I can't believe there is only 1 place on this planet where she can get this treatment. We have to end this nonesense.
She's quite scared at the moment, especially after the news from the US relating to stents. I'm so proud of her and so hopefull that the surgery provides her some of the results she's hoping for. I'll let you all know how it goes.
So now to the task at hand. Here are some of my ideas to start the ball rolling:
Approach/contact all the University based Hospitals and researchers with CCSVI info. We should create a list of them all and who we contact in each. This is where the research will undoubtedly be started.
Start contacting MPs, in particular I was thinking Cameron but they can all make a difference. A massive benefit of this work could be the savings provided to the NHS over the long term, this may provide some traction if we could generate some estimates on prices? Again a log of all communications should be held.
Create localised awareness events, inviting relevant specialists from all disciplines to get together to discuss CCSVI. My dream would be to get Zamboni over to present? Possible? In my book anything is!
Spread the word in the UK, Social Media seems to be the key mechanism to distribute this information quickly, like the FB page for CCSVI (I watched it grow from 1500 fans tgo over 5k fans in a month or so), something similar for the UK group to start creating a racket!! This could also be used to further the petition. I've already created a facebook group to faciltate communication: http://www.facebook.com/group.php?gid=242433905952
If you wish to admin the group, send me a message.
MEDIA, has to be one of our biggest allies. It's already hit the BBC, we need to get this out to as many MEDIA sources as possible. Before we start doing this we need to create a place that people can go to, like a website/phone number/facebook page/group, this will help us grow the numbers needed to start being impossible to ignore. Does anyone work in media? Anyone have any ideas as to how this should be handled?
Would it be worth contacting Private Hospitals/Insurance Companies?
I also thought it about creating something of a log of who has contacted who and the responses but maybe this is just work for works sake, maybe it's important?
We need to ensure that we all work together consistently rather than pulling in different directions. I'm sure you all have ideas and contributions to make. Some of you will be grafters, some leaders, some negotiaters, some unstopable forces of nature. We need to work that stuff out pretty quickly and get organised.
Please add any ideas/suggestions/requests you have.
So, there seems to be quite a bit to be getting on with...who's up for making a difference?
This is brilliant guys and exactly the kind of response I was looking for.
I've been somewhat distracted by the progress of my Mum's case with Dr Simka. She had her scans done on the 20th Dec and they came back positive for stenosis. She had her pre-op tests done today in prep for tomorrow and is having angio-plasty and a stent to resolve her issues.
It's been a pretty harrowing time for her over there, the airline lost her mobility trolley and when we tried to get another one out to her, they decided to break that one. This has meant moving around has been a real issue. At the place where she was staying, she had to sleep upstairs making her totally reliant on the help of others just to get around.
I can't believe there is only 1 place on this planet where she can get this treatment. We have to end this nonesense.
She's quite scared at the moment, especially after the news from the US relating to stents. I'm so proud of her and so hopefull that the surgery provides her some of the results she's hoping for. I'll let you all know how it goes.
So now to the task at hand. Here are some of my ideas to start the ball rolling:
Approach/contact all the University based Hospitals and researchers with CCSVI info. We should create a list of them all and who we contact in each. This is where the research will undoubtedly be started.
Start contacting MPs, in particular I was thinking Cameron but they can all make a difference. A massive benefit of this work could be the savings provided to the NHS over the long term, this may provide some traction if we could generate some estimates on prices? Again a log of all communications should be held.
Create localised awareness events, inviting relevant specialists from all disciplines to get together to discuss CCSVI. My dream would be to get Zamboni over to present? Possible? In my book anything is!
Spread the word in the UK, Social Media seems to be the key mechanism to distribute this information quickly, like the FB page for CCSVI (I watched it grow from 1500 fans tgo over 5k fans in a month or so), something similar for the UK group to start creating a racket!! This could also be used to further the petition. I've already created a facebook group to faciltate communication: http://www.facebook.com/group.php?gid=242433905952
If you wish to admin the group, send me a message.
MEDIA, has to be one of our biggest allies. It's already hit the BBC, we need to get this out to as many MEDIA sources as possible. Before we start doing this we need to create a place that people can go to, like a website/phone number/facebook page/group, this will help us grow the numbers needed to start being impossible to ignore. Does anyone work in media? Anyone have any ideas as to how this should be handled?
Would it be worth contacting Private Hospitals/Insurance Companies?
I also thought it about creating something of a log of who has contacted who and the responses but maybe this is just work for works sake, maybe it's important?
We need to ensure that we all work together consistently rather than pulling in different directions. I'm sure you all have ideas and contributions to make. Some of you will be grafters, some leaders, some negotiaters, some unstopable forces of nature. We need to work that stuff out pretty quickly and get organised.
Please add any ideas/suggestions/requests you have.
So, there seems to be quite a bit to be getting on with...who's up for making a difference?
-
SkallyWags
- Getting to Know You...
- Posts: 23
- Joined: Sun Dec 27, 2009 3:00 pm
Hi BodgeIT,
So sorry your mum is having a bad time. Traveling is frustrating with limited mobility. It will be worth it though.
Count me in. I agree with all your suggestions. I think it's important that we are all sending out a consistent message, so maybe we could build an information pack?
I think you idea of awareness events is very exciting.
I also think you are right about keeping a log of who has contacted who, saves us wasting precious time contacting the same people. It also means everyone has sight of the progress being made.
Happy to help in whatever capacity.
Off to checkout your facebook group.
Fingers crossed for your mum.
So sorry your mum is having a bad time. Traveling is frustrating with limited mobility. It will be worth it though.
Count me in. I agree with all your suggestions. I think it's important that we are all sending out a consistent message, so maybe we could build an information pack?
I think you idea of awareness events is very exciting.
I also think you are right about keeping a log of who has contacted who, saves us wasting precious time contacting the same people. It also means everyone has sight of the progress being made.
Happy to help in whatever capacity.
Off to checkout your facebook group.
Fingers crossed for your mum.
Website in UK
Hi BodgIT,
As I said in my PM to you there is the embryo of a website in the UK already. Here is the URL
http://www.ccsvi.co.uk/
I've been in touch again with the mother of the person who is setting this up to try and get some idea of when this is going to develop into something we can use.
I could possibly put together a simple website if this does not take off soon, but any thing that I can do is information only as I have no experience in creating interactive sites (I might be able to learn though).
As I said in my PM to you there is the embryo of a website in the UK already. Here is the URL
http://www.ccsvi.co.uk/
I've been in touch again with the mother of the person who is setting this up to try and get some idea of when this is going to develop into something we can use.
I could possibly put together a simple website if this does not take off soon, but any thing that I can do is information only as I have no experience in creating interactive sites (I might be able to learn though).
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
Great idea Skallywags, want to take this on?I think it's important that we are all sending out a consistent message, so maybe we could build an information pack?
I don't want to keep resorting to tech to make this work(but that's my background so hard not to) we would all need access to it, so maybe use one of the online office things like Google or MicrofsoftOfficeLive (this one is probably best).
Dovechick, do we have access to this site? For it to be effective it needs to be SEF/SEO enabled and have other links to and from it...looks great though. While we build numbers maybe we could get the petition link and the FB group link put up on it?As I said in my PM to you there is the embryo of a website in the UK already. Here is the URL http://www.ccsvi.co.uk/
Prospective MP
You could try to find out who your prospective MPs are in your area. This seems to work quite well. When I have contacted my MP I also contact the opposition prospective member and a kind of competition starts as to who gets in touch with you quickest. I kind of drop hints (subtle) about their opposite number.
Usually the opposition member has more time and is more likely to look into things, than someone who is busy with the political work life. And you might get their attention onto our cause early on in their political career.
Usually the opposition member has more time and is more likely to look into things, than someone who is busy with the political work life. And you might get their attention onto our cause early on in their political career.
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.