This Is MS Multiple Sclerosis Knowledge & Support Community

Hello All,

I liked the title page on Haacke's web site. He made good strong points in my humble opinion. Might be able to quote him in your packet. Here's the link again.
http://www.ms-mri.com/

Lora

Me again. Im shattered, but I cant read anymore! I am not even close to where I wanted to be! Sorry. I will do some more tomorrow night.

I have downloaded lots of documents to read and summarise. I thought it would be worth clarifying the structure. I am thinking we need a 2 pager putting forward a strong case, with all the evidence as appendicies. Below is what I have come up with so far...please be honest, I do have a habit of oversimplifying things and we need this to be professional and attention grabing. Its important that we get it right so I am hoping for some direction here - i am soooooo not sensitive, thanks. Here goes - please note, the number in brackets is where we will have evidence to back-up the statement in the appendix....

Why the UK Should Acknowledge the Evidence Suggesting a Correlation Between Multiple Sclerosis and Chronic Cerebralspinal Venous Insufficiency

We have approximately X people living with Multiple Sclerosis (MS) in the UK, with X being diagnosed per year. The cost to our economy is approximately X per year(1). If, as substantial evidence suggests, there is a link between MS and Chronic Cerebrospinal Venous Insufficiency (CCSVI), this could provide a saving of X per year(2) to the UK economy.

This is, however, a secondary benefit. As we so often read, MS is a debilitating disease (some details here of how horrible it is). This could end much suffering through early diagnosis and effective treatment. It has helped the lives of so many already (some info here of how many people have been successfully treated in Italy, Poland and the US)(3)

So What Is CCSVI?
A summary of CCSVI, with an overview of Dr Zamboni's first clinical trial.(4)

What Other Evidence Is There?
Here I wanted to draw a timeline of research with a small paragraph. In appendix 5 there would be a medical publication of each of the research. What I have come across so far...
- 1863 Rindfleisch, Veins Engorged with Blood
- 1930s Putnam, Thrombosis of small veins
- 1950 Zimmermann and Netsky, Lesions are venous in nature
...you get the idea, I will also include alternative therapies, hyperbaric oxygen therapy, swank diet etc

Who Is In Support Of CCSVI?
Here list the medical professionals, the other clinical trials that are going on and a link to the petition with details of the number of people who have signed the petition at the time of printing.

Request
Here I think we need to state what actions we would like the recipiant to take - be it an MP or a University Hospital, which I have no idea what they are!

Appendicies
1 - Number of people diagnosed per year x cost of visit with neurologist & MRI for diagnosis + average annual number of people with Relapse remitting x cost for standard treatment.
2 - annual cost of MS to UK currently - (cost of diagnosis via doppler, MRV and treatment of angio(whatever/ liberation treatment) x average number of people diagnosed with ms per year) =annual saving
3 - Selected reports of progress, where possible medical reports - is this possible?
4 - A medical publication of Dr Zamboni's results[/b]

Hi, just to let you know that the CCSVI facebook page is now asking people to provide information of regional groups, facebook pages, webpages etc.

Took a few attempts to get it formatted correctly but posted all 3 links:
Website, Group & Petition.

How inspiring to see all the other work being done on this around the world.
For a group of people known to struggle with loss of energy/lethargy MSers sure can generate a storm!!!

I'm off o bed to. SkallyWags I'm lovin your work .good on ya keep it up.
colmmc

Skallywags, this is great! I'm tired too so will have another look at it tomorrow. It's looking like a bigger job than we thought so it might be prudent to get some support? Up to you...

The other thing is to focus on who this pack is intended for... my understanding was this was to be the pack we send to the medical institutions and individuals that can move forward the research. I'm not sure the medical folks are going to be that interested in how much the UK could save...but this is not wasted because it would go in the press pack and more importantly for the MPs info...

It's looking like we'll need 3 crafted packs 1 technical, 1 Press/Media & 1 Political

Nicola from the FB group has suggested we get in touch with high profile people in the UK with MS as well as start looking for funding sources...Very good ideas!!!

Morning all, Thanks for the feedback so far. BodeIT I think your right, I have got alittle confused with the target market! help. I will have a bit more of a think about it later. I am thinking we also need a section explaining why the UK are not taking the study seriously - yes the clinical trial was not as controlled as it should have been, but there is still strong evidence.

I agree that we need a more technical pack for the medical professionals - I told you I oversimplify!

If you think the pack is on the right lines I could definately do with some help if anyone has the time?

The suggestion from Nicola on FB is a great one - but she is my sister so I am biased! Really gald she is getting involved, she is fantastic at finding information out and is very creative with her ideas.

Right, I am banning myself from checking this forum until tonight! I am totally obcessed.

BodgeIT wrote:SkallyWags
Have you seen the latest MSRC page for CCSVI...
might help you with the pack:
http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2944

Hi BodgeIT

I add all new CCSVI information to the MSRC CCSVI page on an ongoing basis, so try to keep it as up to date as time and committments allow.

squiffs

BodgeIT wrote: John/Squiffy not sure what protocol to follow..name or nickname?
I wondered if you could support us, does the MSRC have any information from their archives in relation to the costs to the NHS for an MS patient over a year or their lifetime?

Hi BodgeIT

Will try and find this out, though may take a while as MSRC, lik eeverywhere else is affected by the weather conditions! Luckily I work from home, but the office is based in Colchester so weather has affected travel badly.

squiffs

Skallywag, are you Krystalla, in which case I have offered to help. Maybe we should start by gathering all the information we can, which is what you have done already it seems and then we can decide which pack to put it in... I think you have done a great job so far, and I know what you mean about becoming obsessed. I get the same way.

I think one of the problems we have with getting the information to the right people is finding a way to direct them at someone personally, something we will have to work on.

I notice that at the moment there are not many of us working on this (we have done well but there is a limit) maybe because this is basically a US site, so hopefully a few of the people of Bringing Liberation will get involved and take the load off.

Hi Michele, yes that is me - krystalla.

Thank you hugely for helping me. I have started downloading the documents I think that are most relevant. Yesterday I hadn't finished going through the CCSVI facebook page, and there is still this forum to go through and the MSRC website.

I agree, lets get the information we think is most suitable/ persuasive and then sort out the packs and the summaries.

Are you ok to tackle one of the other sites for information and then we can find a way of sharing the documents?

Thanks again. xx.

Hey you promised you weren't going to check this site until later...little Skallywag!

Hey guys, think this should be included?

colmmc, how are you getting on with the Press story, have you responded yet? Keep us updated, if you need more support, let us know.

Just thought you'd like to know that there's a BBC Scotland reporter, based in Edinburgh, called Elizabeth Quigley who has MS. She's married to John Swinney who's Scotland's Cabinet Secretary for Finance.

Did anyone take on getting in touch with Elizabeth Sweeney?

Yes, I have this info about Esaote already, the website does not add much to our info, and we have a direct line to the MD of the UK arm of this firm.

BodgeIT you have his address... to clarify costs of training.

Skallywags there are ~ 85,000 MS sufferers in the UK, a hospital stay costs about £200 a night, drugs: depends on which and for how long, the greatest cost to the state is care and support. GPs might be concerned about the cost of care for a patient, but neurologist probably not so much.

I am happy to search any place you like, but there is a lot of duplication so you may find that you already have anything I dig up. From my experience I come across the same documents in different places. Actually Thisisms probably has anything relevant. I have been collecting information from this thread and from the Dr Simka thread as it arose, so that might save a bit of time.