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CCSVI

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  • Do MS Ireland support research into CCSVI?

MS Ireland's research programme welcomes submissions from all types of researchers in all areas of MS. To date, the research committee have received no application to fund any CCSVI related research. The call for the 2010/2011 programme will probably go out in April and the committee will review all applications based on their scientific merit, value to the MS community and contribution to world-wide research.

Full article: http://www.ms-society.ie/pages/ ccsvi-information-sheet


Edited by Marina
Replacing copyrighted material with link to article

Lottie, x

 

LIVING IN THE MOMENT

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Procrastinating
Stumbler

It's a shame that we seem to be becoming too staid and careful. Nobody wants to take a chance, just in case they make a mistake! :boo_hoo:

 

Where would we be if that person, who thought, "if I pull those pink dangly things under that cow, I'll see what comes out and, if it's liquid, I'll drink it" hadn't taken a chance? :cry2:

 

Or did that go through a double blind trial as well? :wtf:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Christina

No I guess not John, but they may have pulled at a few other dangly things before they realised lol!!

 

To be serious, we wouldn't really want to be exposed to treatments or drugs which hadn't been trialed and tested would we and which turned out to be very harmful? Or at least we'd want to know what the harm was, so we would make informed judgements. The research needs to be done before the majority of people with MS will get anywhere near this treatment in the NHS.

 

Chris x :boo_hoo:


Edited by Christina

Not waiting for the storm to pass, but learning to dance in the rain ....

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Procrastinating
Stumbler
No I guess not John, but they may have pulled at a few other dangly things before they realised lol!!

 

To be serious, we wouldn't really want to be exposed to treatments or drugs which hadn't been trialed and tested would we and which turned out to be very harmful? Or at least we'd want to know what the harm was, so we would make informed judgements. The research needs to be done before the majority of people with MS will get anywhere near this treatment in the NHS.

 

Chris x :unfair:

 

But, Chris, how much risk is there in the long term usage of these DMDs, and other meds?

 

Yes, there has been an issue with some of the liberation treatments, where stents were used, which subsequently moved. I believe the balloon (now, what is that called?) is usually employed. This does not introduce anything alien to the body and just does a bit of stretching.

 

Surely that risk is somewhat smaller than drugs, unless the angio-plasterer (is that a term? :wacko: ) is a "Boy-racer" and needs to swerve! :shithappens:

 

Not sure about the cow, I wasn't around at the time! :blush3:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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brainless

Also, Chris, what harm is it doing the test??? If they want to build up a picture, TEST US! And then. go forward on the basis of information.

 

:shithappens:

I don't know about the UK but here it always seems to be a problem with funds and/or lack of 'joined-up' thinking. Admin runs medicine and that is not the way to help people.

 

:blush3: I'm getting depressed...think it's time for a joke....John?????? :unfair:


Lottie, x

 

LIVING IN THE MOMENT

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Christina

I'm not saying this treatment doesn't work, I have an open mind and I don't think I said people shouldn't be tested. I'm just saying it can't be available without charge to those people who want it or might benefit from it until clinically trialled research gets started on a much bigger scale and yes that would include doing the doppler/venogram testing. The systems we have in place in this country require many hoops to be jumped before treatments are released. I agree initial results from those people who've received treatment abroad look very promising and it's understandable that we all want to be cured of this as soon as possible, but there are questions that need looking at in depth before it can be said that it will help the vast majority of people with MS and before Neurologists will be convinced there's something in all this.

 

John, you're right - who knows what long term damage DMDs may cause either but hopefully we'll find out - I'm not certain what the position is on long term clinical trials for DMDs these days.

 

Anyway, at least there's still a healthy debate and exchange of views going on.

 

Chris x :unfair:


Not waiting for the storm to pass, but learning to dance in the rain ....

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brainless

sorry, Chris, you may have misunderstood me. I'm in no way advocating that they should carry out the procedure willy-nilly, but the non invasive ultra sound, why not?!

 

quote name='Christina' date='14 Jul 2010, 16:34 ' post='59158']

I'm not saying this treatment doesn't work, I have an open mind and I don't think I said people shouldn't be tested. I'm just saying it can't be available without charge to those people who want it or might benefit from it until clinically trialled research gets started on a much bigger scale and yes that would include doing the doppler/venogram testing. The systems we have in place in this country require many hoops to be jumped before treatments are released. I agree initial results from those people who've received treatment abroad look very promising and it's understandable that we all want to be cured of this as soon as possible, but there are questions that need looking at in depth before it can be said that it will help the vast majority of people with MS and before Neurologists will be convinced there's something in all this.

 

John, you're right - who knows what long term damage DMDs may cause either but hopefully we'll find out - I'm not certain what the position is on long term clinical trials for DMDs these days.

 

Anyway, at least there's still a healthy debate and exchange of views going on.

 

Chris x :unfair:


Lottie, x

 

LIVING IN THE MOMENT

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Procrastinating
Stumbler

Chris, why are the Essential Health Clinic people investing so much money in performing tests and providing treatments around the UK?

 

They don't seem to be worried about "hoop-jumping" or a healthy return on an investment!

 

I do love a conspiracy theory :shithappens:

 

:unfair:

 

And, Lottie, another joke placed in the correct place for you.


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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colmmc

Hoops you say we've been led a merry dance since 1863.

 

CCSVI Timeline of Events

 

The History of Chronic Cerebrospinal Venous Insufficiency in Multiple Sclerosis

Full article: http://ccsviworldwidevictory.com/CCSVITimeline.aspx

 

How much longer will we have to wait?

 

I've been Liberated

 

Colmmc.


Edited by Marina
Replacing copyrighted material with link to article

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Christina

I'm sure it's not through altruism John lol! There is a demand that isn't currently being met by the Health Service, a gap in the market and a way to make some money.

 

Lottie - Unfortunately the NHS isn't going to offer us screening just because we feel we'd like it. The costs would be too high to contemplate and they aren't in a position to offer treatment even if they find a problem. That's why people have to pay privately if they want to find out about their veins. The NHS isn't going to offer that until they are sure the treatment works. That's why clinical trials are needed - then at least some people would get the screening and treatment and it may open the way for everyone.

Chris x :unfair:


Not waiting for the storm to pass, but learning to dance in the rain ....

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brainless
I'm sure it's not through altruism John lol! There is a demand that isn't currently being met by the Health Service, a gap in the market and a way to make some money.

 

Lottie - Unfortunately the NHS isn't going to offer us screening just because we feel we'd like it. The costs would be too high to contemplate and they aren't in a position to offer treatment even if they find a problem. That's why people have to pay privately if they want to find out about their veins. The NHS isn't going to offer that until they are sure the treatment works. That's why clinical trials are needed - then at least some people would get the screening and treatment and it may open the way for everyone.

Chris x :unfair:

 

of course you're right, Chris. Just in one of my 'they're all out to get us, moods'! clear thinking will return, hopefully, following a good night's sleep! x


Lottie, x

 

LIVING IN THE MOMENT

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happyandy

I agree with Chris,

 

There is no way NICE would recommend spending money on something that is unproven hence the need for clinical trials. And so far, the only major study, the Buffalo study showed that 56% of people with MS had CCSVI, 44% didn't. That would suggest that CCSVI isn't the root cause of MS. But you need more study's to confirm or refute the theory.

 

Andy


If I knew I was going to live so long I would have taken better care of my body

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Procrastinating
Stumbler

I'm with Lottie on this. I've got no gripes here and value the discussions.

 

Cheers, all

 

:unfair:

 

of course you're right, Chris. Just in one of my 'they're all out to get us, moods'! clear thinking will return, hopefully, following a good night's sleep! x

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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colmmc
I'm sure it's not through altruism John lol! There is a demand that isn't currently being met by the Health Service, a gap in the market and a way to make some money.

 

Lottie - Unfortunately the NHS isn't going to offer us screening just because we feel we'd like it. The costs would be too high to contemplate and they aren't in a position to offer treatment even if they find a problem. That's why people have to pay privately if they want to find out about their veins. The NHS isn't going to offer that until they are sure the treatment works. That's why clinical trials are needed - then at least some people would get the screening and treatment and it may open the way for everyone.

Chris x :unfair:

 

Why won't they give us screening ? They work for us.Supposedly In are best Interest.

 

The cost would be a fraction of some of the drug's we are doled out.

 

I speak to I man Who's wife is bed bound wit MS. His Local council are building them a down stairs bedroom & bathroom at

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Christina

With respect Colm, I am sure you would agree, there are lots of things the NHS could fund but can't. It's not possible to do everything because it costs a shed load to run the Health Service and choices have to be made. When those choices are made, they are done so on proven and cost effective treatments. At the moment the research isn't there to do that in respect of CCSVI. Whilst I know that many people are being helped by liberation treatment, there are others that haven't been - I know that for a fact. So we can't expect our health service to offer screening until it looks like it's worth spending tax payers money doing that. It's tough when it's about people's lives but that's how it is in reality. I agree a lot is spent on expensive treatments but only those that have been through rigorous trials and show measurable evidence of working - CCSVI isn't there yet.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Bernadette
...Whilst I know that many people are being helped by liberation treatment, there are others that haven't been...

 

That's true of pretty much every treatment for anything though, isn't it? If the NHS is put off providing a treatment just because it doesn't work in every case, we would have no treatments for any illnesses!

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Lindyloo

Sometimes i wonder for all the money that is spent on DMD's..... per person... per year.....

 

what about all the MSers that dont take DMD's....No money spent there!!!! and lets be honest there are loads of people not taking DMD's .... So really if myself and many others on no DMD's ..... 18,000 per year per person is alot of money and should entitle us to have scans if we need them...

The goverment save a fortune on saving funds on those of us that dont take DMD's...

 

 

How much for a scan???? How much for a year of DMD's???........

 

Love Lindyxxx


LindyLoo xx

" This moment will pass " (Bono U2)

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colmmc
With respect Colm, I am sure you would agree, there are lots of things the NHS could fund but can't. It's not possible to do everything because it costs a shed load to run the Health Service and choices have to be made. When those choices are made, they are done so on proven and cost effective treatments. At the moment the research isn't there to do that in respect of CCSVI. Whilst I know that many people are being helped by liberation treatment, there are others that haven't been - I know that for a fact. So we can't expect our health service to offer screening until it looks like it's worth spending tax payers money doing that. It's tough when it's about people's lives but that's how it is in reality. I agree a lot is spent on expensive treatments but only those that have been through rigorous trials and show measurable evidence of working -

Chris x

 

CCSVI isn't there yet. Why ? OUR health service isn't even looking into it. Thats what I'm asking them to do.And please don't tell me you think the NHS is this glorious organization that is run with our best interests a its heart.It needs burning down and rebuilding.With the power taken away from the consultants who run it now to their own self serving end's.

 

You all should Know by now ,

 

I've been Liberated .

 

Colmmc.

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brainless

Okay

 

I've slept on it and I've looked at your contribution Lindy and I agree with you. If we want to know more, research must be done. What better/ easier/ harmless and, relatively cheap way is there to do that than this new doppler test?

 

It may not turn up the information we want. It may only ultimately work for a minority But, if even 10% end up with reduced symptoms and relapses, that sounds good to me

 

Lindy, I think rightfully, points out that DMDs cost a huge amount but I have yet to hear someone on this site rave about them and tell me that they have made a huge difference to their lives.

 

We must be realistic of course, but we must also be proactive. If we sit around and wait for the administrators, it could take forever. MSrs rneed to put CCSVIon the agenda. If we don't, I think it will be a long time before anyone else will and, let's face it, not everyone can afford that time.


Lottie, x

 

LIVING IN THE MOMENT

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happyandy

Morning folks

 

Does the NHS do research ? I thought it was just the Pharmas and universities that do research ? I know my late wife took part in clinical trials on NHS premises and that NHS staff administered the drugs but it was the Pharma's that did the statistical analysis and paid for the trial.

 

Why is the private sector in the UK not offering the angioplasty on patients with CCSVI ? What would the consequences be if the procedure was carried out for the practice in question ?

 

Can it be that the risks and benefits of procedures to treat CCSVI have not been established by properly controlled clinical trials. One questions why the procedure outwith research facilities is not being offered in the US, UK or Canada but in Eastern Europe and India. Is it because they more enlightened or is it because if things went wrong you wouldn't have any comeback ?

 

The Buffalo study was disappointing. Had the results come back stating 100% or even close to it that CCSVI was present in MS patients,the procedure would have been fast tracked.

 

Andy


Edited by happyandy

If I knew I was going to live so long I would have taken better care of my body

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Christina
CCSVI isn't there yet. Why ? OUR health service isn't even looking into it. Thats what I'm asking them to do.And please don't tell me you think the NHS is this glorious organization that is run with our best interests a its heart.It needs burning down and rebuilding.With the power taken away from the consultants who run it now to their own self serving end's.

 

You all should Know by now ,

 

I've been Liberated .

 

Colmmc.

Well call me old fashioned Colm but I do think the Nhs is a pretty good system. I'd rather have it than one like the US have, warts and all. I worked in it for many years so that probably biases me and I saw the good and bad bits. Anyway there are many people who are with you all the way in getting this put on the agenda for research. I hope someone takes up the research challenge and the evidence which comes out helps decide whether it's a treatment that can be offered.


Not waiting for the storm to pass, but learning to dance in the rain ....

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Christina
Morning folks

 

Does the NHS do research ? I thought it was just the Pharmas and universities that do research ? I know my late wife took part in clinical trials on NHS premises and that NHS staff administered the drugs but it was the Pharma's that did the statistical analysis and paid for the trial.

 

Why is the private sector in the UK not offering the angioplasty on patients with CCSVI ? What would the consequences be if the procedure was carried out for the practice in question ?

 

Can it be that the risks and benefits of procedures to treat CCSVI have not been established by properly controlled clinical trials. One questions why the procedure outwith research facilities is not being offered in the US, UK or Canada but in Eastern Europe and India. Is it because they more enlightened or is it because if things went wrong you wouldn't have any comeback ?

 

The Buffalo study was disappointing. Had the results come back stating 100% or even close to it that CCSVI was present in MS patients,the procedure would have been fast tracked.

 

Andy

 

Morning Andy

 

You're right the NHS doesn't do research - it is down to pharmaceutical companies and universities. For obvious reasons Pharma isn't going to be queuing up to research CCSVI and universities are about to have their budgets cut which will have an effect on research in my view. MS charities have money available for research projects but need scientists to come forward with proposals. So until trials get done and evidence published, the NHS isn't in a position to offer anything including screening for anyone.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Christina
That's true of pretty much every treatment for anything though, isn't it? If the NHS is put off providing a treatment just because it doesn't work in every case, we would have no treatments for any illnesses!

 

 

You're right Bernadette, most treatments available are not the answer for every person in every case but the difference is that the NHS has decided to provide those treatments because they have properly researched evidence before them that the treatment or drug can work for a lot of people. As yet, until clinical trials start for CCSVI, the NHS isn't putting off providing treatment - there is little evidence available for them to make an informed choice about whether to offer it. If they do at some future date, it will be based on clinical data and whether the treatment is cost effective. It was true of DMDs to begin with - it was a post code lottery here whether the local NHS trust would fund the drugs because they were so expensive. The NHS has to always look at the bigger picture and the harsh reality means that includes value for money.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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colmmc
Morning folks

 

Does the NHS do research ? I thought it was just the Pharmas and universities that do research ? I know my late wife took part in clinical trials on NHS premises and that NHS staff administered the drugs but it was the Pharma's that did the statistical analysis and paid for the trial.

 

Why is the private sector in the UK not offering the angioplasty on patients with CCSVI ? What would the consequences be if the procedure was carried out for the practice in question ?

 

Can it be that the risks and benefits of procedures to treat CCSVI have not been established by properly controlled clinical trials. One questions why the procedure outwith research facilities is not being offered in the US, UK or Canada but in Eastern Europe and India. Is it because they more enlightened or is it because if things went wrong you wouldn't have any comeback ?

 

The Buffalo study was disappointing. Had the results come back stating 100% or even close to it that CCSVI was present in MS patients it the procedure would have been fast tracked.

 

Andy

Or is it The Drug companies have more control here? They have to much power and are to closely connected to the testing & publishing of results,Who checks their findings ?And who checks the unhealthy relationship between them and the Consultants ? You scratch my back and I'll have your back is well looked after in a 5 star resort next Holiday's. Since the news broke about CCSVI last November.I have been amazed at the amount of new MS drugs that have been released as "The answer " Have these just finished being trialled or have they been rushed out to make sure they get a pay day out of them?

 

The Buffalo study was set up to disprove CCSVI not prove it, I would like to remind everyone that the testing done in Buffalo did not replicate Dr. Zamboni

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Christina
Sometimes i wonder for all the money that is spent on DMD's..... per person... per year.....

 

what about all the MSers that dont take DMD's....No money spent there!!!! and lets be honest there are loads of people not taking DMD's .... So really if myself and many others on no DMD's ..... 18,000 per year per person is alot of money and should entitle us to have scans if we need them...

The goverment save a fortune on saving funds on those of us that dont take DMD's...

 

 

How much for a scan???? How much for a year of DMD's???........

 

Love Lindyxxx

 

 

A quick question Lindy - what happens after the scan though? Even if the NHS was doing them for people, the treatment can't be offered in the UK because there is not enough clinical evidence for them to do that. The NHS isn't a research body in its own right here - that's down to the scientists. So you could potentially be left with a lot of disappointed and disgruntled people, who found out they have a problem but would only be able to access treatment privately abroad. Tax payers money would have been spent in doing that too and there are lots of other patient groups out there who also feel their causes are deserving. I just think the NHS has to look at the bigger picture.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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