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Posted: Fri Apr 02, 2010 6:01 am
by mose
Liva, caps lock off please.
Posted: Fri Apr 02, 2010 6:04 am
by livabird
MOST PEOPLE KNOW I TYPE IN CAPS BECAUSE IT IS THE ONLY WAY I CAN TYPE. PLEASE DON'T MAKE AN ISSUE OF IT
Let's get real.
Posted: Sat Apr 03, 2010 12:59 am
by Dovechick
As some of you may know I am actively involved in the UK pressure group
http://www.ms-ccsvi-uk.org -
http://www.facebook.com/ms.ccsvi.uk.
We are always looking for ways in which to add pressure to the bodies that are standing in our way. But there are a number of points I wish to make in reply to some of the comments people have made here.
Firstly: the good thing about the petition is that it has motivated 10,659 people into doing something, it has raised their awareness of the problem and it continues to spread the word through forum such as this and by word of mouth, through the press and the media. Because of it we have secured the help of more people to make things happen, including a couple of celebrities and some doctors and politicians. The situation now in the UK is much different to what it used to be in January.
Secondly: there are a number of things 'wrong' with the petition: the wording was wrong, what we were asking was wrong, and the spelling was wrong in places. None of these things were helpful but there was nothing we could do about it, as the petitions was not ours, and the owner of the petition did not actually join our group until after the petition closed. We chose to back it because starting a rival one would have diluted the message.
Thirdly: the effort required to circulate it was massive and our members were constantly badgering their friends and relatives to get involved. Everyone now is suffering from petition fatigue, there will come a time in the future when we can start another, but concentrating all our efforts in something that is not that effective in making things happen is counterproductive. We need to do the less spectacular but more long lasting ground work of informing, speaking and challenging people with MS, government, politicians, doctors and the NHS.
Fourthly: in reply to the suggestion of involving Interventional Radiologist and Vascular surgeons in the discussion and striving to get research done, the group is actively involved in that and there are signs that a number are interested in getting the necessary training, doing the testing and even the possibilityof doing the research and follow up necessary to convince the UK of the validity of this treatment for MS patients. But let us not kid ourselves that this is going to make the neurologists go away. We have to win over hearts and minds and ignoring them is not going to make them go away, so we have to continue to include them in the loop. It is frustrating, we know and even infuriating to hear that the Prof Compston's views (biased as he is towards drugs) are still being bandied about and have not really changed since his views were first posted on the MS soc website on the 4th November, in spite of the fact that the MS soc itself has made some changes in its attitude since then and that the statement has since disappeared from their website.
Fifthly: Multiple Stenoses? Not really, not everyone with MS have multiple stenoses, my daughter only had one, but even with only one she is making progress. And her experience of PTA was the same as other people's whose symptoms returned after a week when the vein had collapsed again. Proof of course of the connection between stenosis and the symptoms of MS. But let us not get ahead of ourselves here. People with MS who are nearing or into SPMS are not likely to recover completely, too much damage having been done to CNS and neurologists are still going to have a job to do if only to manage these patients, and discover ways of rehabilitating them (StemCell, physiotherapy, research into brain regeneration etc). The other point about using a term such as MULTIPLE STENOSIS (correct spelling would be multiple stenoses - I'm a bit picky about spelling these days) is that the abbreviation is going to be MS which is counterproductive if we are trying to change things.
Sixthly: Fundraising, raising funds for studies is a major, major enterprise that cannot be undertaken without a massive support base, which we do not have at the moment. We managed to raise enough enthusiasm from 10,000 people to sign a petition, but most of these people were not MS sufferers and even directly involved with pwMS, the majority of MS sufferers in the UK are not well informed and many not be informed at all about CCSVI. We have to change that situation. I and my daughter are personally getting involved in visiting and talking to people in MS branches, therapy centres, charities that hold informational databases, disability support charities etc in the SE of England. But what we need is for everybody who is able to, to go talk to their local MS group, because there are a lot of MS sufferers out there who are not able to access the internet and who don't have anyone to help them to do that. We are sadly short of members in Scotland which is a world hotspot for MS, why is that, why are we not getting through to them.
We do know of a couple of doctors who are applying for funding from the Government and we are hopeful that this will be the start of some research in this country. At that point and with greater backing we may consider setting up a charity and do some fundraising. But now is not the time, we have to do more to get the grass roots involved and to bite the ankles of the politicians and medicos.
Posted: Sat Apr 03, 2010 1:08 am
by livabird
YEAH FOR UK FOR CCSVI GROUP. IDEA MAKE MAY 5 A GLOBAL PROTEST FOR MS DAY. IN CANADA THEY WILL BE PROTESTING ON PARLIAMENT HILL. WHY DON'T WE JOIN THEM BY PROTESTING AT 10 DOWNING STREET. THINK OF THE IMPACT. MEDIA COVERAGE. WE NEED DRASTIC ACTION AGAINST PHARMA RUN GOVERNMENT. IT IS NEARLY ELECTION TIME WHAT A BOTHER IT WOULD BE.
LIVA
Election time
Posted: Sat Apr 03, 2010 1:19 am
by Dovechick
Livabird, may the 5th is the day before the general election, we are unlikely to be noticed and all the MPs are going to be in their constituencies... bad timing for us but nothing we can do about it. We will be doing something on the internet on that day but not in physical terms as a group.
May the 26th is another possible, but there are problems for us in motivating enough people to turn out to make an impact for CCSVI in amongst all the other MS people doing their drug, diet selling things... on that day.
Posted: Sat Apr 03, 2010 1:36 am
by livabird
HUMM RETHINK TIME. IN CANADA TWO UNIVERSITIES ARE RAISING FUNDING TO BUY THEIR OWN EQUIPMENT. UNFORTUNATELY UNIVERSITIES HERE ARE GOVERNMENT BACKED BUT ESSENTIAL HEALTH MAY BE OUR ANSWER. WE MUST DO SOMETHING COMPLETELY DISRUPTIVE HERE THAT IS HOW TO GET NOTICED. CANADIANS ARE NOT TAKING THEIR GOVERNMENT.S LACK OF ACTION WE SHOULDN'T EITHER. SOMETHING GLOBAL WOULD GET THE MOST MEDIA ATTENTION. I DON'T KNOW HOW CONTROLLED OUR MEDIA IS. CTV IN CANADA IS AMAZING. THEY REALLY BROUGHT CCSVI INTO THE LIMELIGHT I AM GOING TO POLAND IN TWO WEEKS MY HUSBAND CONTACTED LOCAL MEDIA BUT NO BITES THUS FAR. THE CLINIC IN POLAND IS AMAZING. DR. LUDYKA IS A BUSINESS MAN AS WELL AND HELPED THE GOVERNMENT ACQUIRE EQUIPMENT. I THINK OUR PRIVATE CLINIC HERE WILL END UP BEING A GOOD ON WITH ITS COMPLETE HOLISTIC APPROACH TO MS. POLAND IS HELPING OTHER COUNTRIES TO SET UP THEIR CLINICS THEY REALLY AREN'T DOING THIS FOR PROFIT. UK SHOULD HAVE THEM VISIT HERE OR HAVE THEY ALREADY.
Posted: Sat Apr 03, 2010 1:46 am
by livabird
ATUALLY I JUST THOUGHT THAT DAY COULD BE GREAT. THEY ARE IN THEIR CONSTITUENCIES TRYING TO DRUM UP LAST MINUTE VOTES AND MEDIA COVERAGE. A LARGE PROTEST IS GOING ON AT NUMBER 10 TAKING FOCUS AND MEDIA AWAY FROM THEM. I THINK IT WOULD BE A GREAT OPPORTUNITY.
Good Luck Michelle
Posted: Sat Apr 03, 2010 2:44 am
by MarkW
Good Luck Michelle you obviously are thinking about this.
I suggest you support the provision of CCSVI private testing and venoplasty treatment in the UK before any clinical trials. The reasons you gave show how much time and money clinical trials would take, so going that route means a 3-5 year delay.
Testing and treating people who can pay is not fair, I agree. But showing that removing stenoses helps MS (stopping progression or some improvement) will create a story. If just 1% of pwMS can pay for testing and treatment that will be 1000 cases in the UK and a big media story.
Food for thought, I hope.
MarkW
action in UK
Posted: Sat Apr 03, 2010 3:52 am
by Dovechick
Livabird, we have to think of how best we can use our resources bearing in mind that many of our members are either overseas or have MS, we at MS-CCSVI-UK have to increase our membership of people able to turn out in great numbers to make a big noise. We were at the bottom on the media interest as the Sky news report was directly related to a member of our team and featured another one (Martin), the BBC breakfast news was also directly related to people who are members of our site as GiCi is also part of our team and Jo Chant is also part of our group. Jo and I were in Katowice together which was a great experience. So although it might not be evident to people on the outside, we in our quiet way are making a difference in the UK. We fully intend to meet our mps in parliament but we want to make sure that we get the media coverage that will make a difference. When we delivered the petition we repeatedly contacted our previous contacts in the press and got absolutely no response whatsoever, the moment had past and the story had gone cold. We are encouraging our members to contact their local newspapers which had proved quite effective in the past in getting the story circulated. This strategy often results in the larger newspapers picking up the story again, but just to demonstrate the difficulty about getting people to do things, very few people so far have tried this (except you Livabird, me and a couple of other people on our steering teamn who did manage to get their stories published). We will, however, be suggesting a number of ways in which people can get involved online on the 5th but we have decided not to ask people to turn out on that day.
Mark, yes we are giving out information personally about getting the treatment abroad, although our website is not about treatment but about information and action. There are links on it to all the sites we know of (and feel more confident about) that offer treatment or information about where to get treatment. Yes we want people to come back with their experiences, good or bad because although empirical evidence is not the best kind of evidence it is still valuable and will influence opinion. And yes we are currently collating information about the experiences of these pioneers. And yes we have been instrumental in giving Dr Gilhooly of the Essential Health clinic direct access to training in Poland through our personal communications with Dr Simka and Dr Ludyga in Katowice as well as our intermediary influence with the MD of Esaote UK (Doppler manufacturers). This is what we have been doing, brokering links, communication and connection. That is what we are about.
Posted: Sat Apr 03, 2010 4:05 am
by livabird
I UNDERSTAND WHAT YOU ARE SAYING DOVEGIRL BUT I AM STILL GOING TO TRY. PEOPLE I AM CHATTING WITH OUR FED UP AND ARE READY TO TAKE ACTION. ONE HAS EVEN WRITTEN THE CCSVI SONG. I AM STILL GOING TO TRY MUST BE THE CANADIAN PART OF ME WE DON'T GIVE UP EASILY.
I JUST WANT TO SEE IF I GET A RESPONSE. IF I DON'T WILL HAVE TOO LOOK OUT OF THE BOX.
LIVA
go for it
Posted: Sat Apr 03, 2010 4:20 am
by Dovechick
Go for it Livabird... let us know how you get on. We need people like you lighting beacons all over the UK. If there were more of you we would get to where we want to be sooner.
Posted: Sat Apr 03, 2010 4:34 am
by livabird
THANKS DOVECHICK I TRY NOT MUCH ENERGY AT MOMENT BUT I AM DETERMINED. I HAVE A FORUM SET UP ON MY FACEBOOK I AM GETTING A FEW POSITIVE RESPONSES. I JUST WILL TRY AND PERSEVERE I POSTED ON ANOTHER MS SITE THE MORE ATTENTION I CAN GET THE BETTER. MY DAUGHTER SAID SHE WOULD TELL HER FRIENDS AND SHE HAS A LOT. COULD BE A WILD GOOSE CHASE BUT MAYBE IT WOULD WORK. I THINK WE SHOULD TRY TO GET TEESHIRTS MADE SAYING EITHER I'VE BEEN LIBERATED OR WAITING FOR LIBERATION. COULD GENERATE A BIT OF MONEY. I ALWAYS HAVE IDEAS SOME MAYBE STUPID.
not stupid
Posted: Sat Apr 03, 2010 5:21 am
by Dovechick
No ideas are stupid. We are in the process of procuring T shirts, with our facebook logo on it ... so not suitable for you maybe.
Posted: Sat Apr 03, 2010 5:26 am
by livabird
THEY SOUND GREAT MICHELLE I WOULD WEAR ONE
LIVA
Posted: Sat Apr 03, 2010 12:02 pm
by livabird
WELL MICHELLE I CAN SEE HOW FRUSTRATING IT IS TO GET PEOPLE MOTIVATED HERE. I HAVE 2 POSSIBLE PEOPLE. HUMM I CAN'T GET THROUGH TO PEOPLE. WE NEED TO TAKE DRASTIC ACTION. ONE GUY CAME TO MY FORUM AND SAID A PETITION TO THE NEW GOVERNMENT WOULD BE A GOOD IDEA. HE KEPT PRATTLING ON THAT PEOPLE WITH PHYSICAL DISABILITIES WOULD FIND IT HARD. I MYSELF AM WHEELCHAIR BOUND. I TOLD HIM TO FIND ANOTHER ROOM AS I SET THIS ONE UP FOR A PROTEST. DON'T PEOPLE REALIZE WHATEVER GOVERNMENT THEY GO TO MS SOCIETY FOR ADVICE WHICH IS CHAIRED BY A PHARMA NEUROLOGIST THEY ARE VOCAL ABOUT BEING AGAINST CCSVI. I'LL WAIT A COUPLE OF DAYS THEN GO BACK INTO OBSCURITY. I GUESS PROYEST IS IN THE BLOOD I LIVED IN CANADA FOR MOST OF MY LIFE. ALL MSERS SHOULD DONATE PURELY TO CCSVI CHARITIES NOT MS SOCIETY.
I SEE THE PROBLEMS HERE NOW.
LIVA