CCSVI

[Bernadette]

... I just think we have to be wary about 'miraculous' results which could be short term ...

 

Yes, one of the things which worries me is that the good effects might only be short term, and I'd need to have regular angioplasty. If I knew it was just a one-off, I'd be happier.

 

...and could actually be affected by people wanting to believe so much in the treatment - power of the mind etc...

 

Even if that works for some people, it's working for those people! And it could work for others.

[colmmc]

Anyone up for starting again ?

I've got the energy now I've just got home from a evening out.

I just want to ask the question who said it was a cure?I never said it. .

It works for some and not for others. How do you know this? Surely Its to early to say.

All that is being claimed is at least it will stop progression.

Placebo effect. I'm not even going to grace that with an answer.

If we put the fire out maybe just maybe we can self heal.

If not we will have to wait for the Myelin Repair Foundation.

Research we are not doing any, This is all I have been asking for.

I personal Have no Axe to grind .I do not work for a drugs comp, I'm not a Doctor.

I do not stand to gain anything If you listen to me or not.

I just feel I have a duty to fellow MSers to tell what I have been though,and Know to be fact.

 

I've been Liberated

 

Colmmc

[brainless]

and good on you, Colm, for caring so much. Many, in your position would be on a beach, enjoying new-found health and have forgotten the rest of us. Not you.

 

I appreciate that, x

[Lindyloo]

Hey Colm

 

I echo Lottie...

 

Keep talking.... because we are listening... great stuff from all sides!!

 

I wonder how much Campath costs... as far as i know Gareth is on this if any of you want to look back at old threads..

It isnt a drug to take lightly.... a cancer drug... what next???

 

.... CCSVI is cheap... why should we want more drugs.....Tysabri has killed people!!

I DONT!!!

 

every operation has risks...

 

I have tried the drugs and nearly scewed my liver up because of them.... Seriously lets stand together and be positive and keep banging on and on about it til someone has to listen..

 

Lottie im glad you are from Ireland maybe we will go have lunch with the lovely Mary Harney hahahahaha

 

Love Lindyx

[Christina]

Think I've said enough for the time being Colm - it will only be going over the same ground.

 

Chris x

[gingermagic]

The NHS is a great institution for the majority. I felt safe and secure in its hand until I developed a chronic illness. Then I am afraid your on your own mate.

 

Fact : All drugs given to me by the NHS made me feel worse than I already did.

 

Fact: All the things that I researched myself help to lead a relativley normal life. All of these things are either not endorsed, or I am detered from doing/taking.

 

LDN, oxygen, CCSVI.

 

If you feel safe and secure in the NHS, great carry on.

 

If you want to take control of this illness cosider alternatives.

 

Continuing to agrue against therapies because 'computer says no' will only promote deterioration.

[Dianni]

Hi all

 

I've been reading this thread with great interest. It's obvious there are some very strong feelings.

 

I agree that anything which is seen as 'alternative' by and large is viewed negstively by NHS practioners. It's also very obvious that many of us in one way or another have had positive experience from these therapies and I think, most of us pay a private practioner.

 

There is a great deal of anecdotal evidence that aromatherapy, reiki, faith healing, accupuncture, homoeopathy, magnatherapy, light therapy and a myriad of others, are very useful. It's not so many years ago that physiotherapy was seen as 'alternative'.

 

I wouldn't want the NHS (or any other body for that matter) to be putting money into researching most, if not all of the above.

 

LDN, HOT and CCSVI are all relatively new and largely unrecognised treatments. I agree that research needs to be done. Howeveer, funds are limited and in all honesty should I or any of my loved ones be unfortunate enough to be diagnosed with cancer, I would want treatment. I would rather that whatever funding is available for research, go into finding a cure and/or treatment for a life threatening illness. Lets face it, MS is a bastard of a disease (and I aint going to apologise for swearing) but it's not life limiting. It is life-style limiting. It hurts. It's frustrating. It's incidious. Its down right nasty. But it is highly unlikely to kill me. There are lots of diseases out there that are far worse and far more scary.

 

Our health service is amongst the best in the worlld and is free at the point of delivery. I wouldn't swap this for anything. I know there are doctors and nurses out there who are usleess, rude, uncaring, unprofessional. But these are in the minority. I don't think I'm particularly lucky. I think I am in the majority. I have never recieved anything but great care and treatment from the NHS. Yes, I've had run ins with various health professionals, but this has never turned me against the NHS.

 

I have a friend in America who is still paying off the debt she incurred due to complications when her baby was born and her insurance didn't cover her 20 yrs ago.

 

Talk to people from other countries and they would literally give their right arm to have a health service like ours even with all it's bureaucracy. I have never had to worry about finding the money to get treatment for my kids or myself. My son is only alive due to the skill and dedication of staff at Addenbrookes, Barnsley, Great Ormond Street and Guys hospitals (and the two families who so bravely agreed to donate their loved ones organs).

 

When I started with symptoms, I didn't have to think twice about going to see my GP. I didn't panic when all the tests were ordered (at least not from a finacial point of view). We have to, in all conscience, admit that for the most part not one of us would want to be without the NHS. Ask those members who have private health insurance about the pain in the butt form filling and persauding their providers that their claim is genuine and worthy. Imagine having to go through this every time you see a doctor or break a bone or twist an ankle.

 

Yes I agree that the pharmas have nothing to gain from funding research into CCSVI but this doesn't meaan research isn't happening. It seems to me that Britain is waiting to see what comes of the current research, and why not? It's unlikely that CCSVI would become available in the UK any faster if there was research being funded in this country.

 

I still stand by my statement in an earlier topic that I applaud those who are pushing for research. I also agree that research needs to be done. That doesn't mean that I advocate the idea that the NHS or the UK government should at this time invest in this research. There are other countries doing it and it's highly likely that once this has been evaluated that the UK government will either accept the findings and introduce (if the findings are positive) CCSVI particulalry if the findings from European studies are positive, or will conduct further research.

 

I believe that the NHS is there for our benefit and genuinly has our best interests at heart. I can understand where some of the conspiracy theories come from but funds are finite and as I said before, I would rather the time and money go into research for life threatening illnesses.

 

Thank you again to all of you who are shouting from the roof tops about CCSVI. The more information out there and the more people become educated, the greater the chances that it will one day be avaiable on the NHS.

 

I hope this post isn't too contridicatry!

 

Hugs

Di

xxx

[jeni]

Thank You Di,

 

Thank You so much for writing everything that I would of liked to have said, but do I not have the brain power to put into words these days.

 

I applaud Gingermac and Colm for having the courage to have the treaments.

 

I am not dx'd as yet, so still feel as if I am sitting on the fence in two ways, one do I have MS, two would I have the treatment if I do? At this moment in time after reading everything that you guys have been writing I am still sitting on that fence.

 

But as I said "Thanks Di"

 

 

Take Care.

 

Jeni xx

[Stumbler]

Di, nice summisation of where we are.

 

But, is the NHS spending money wisely? I will go and see my neuro consultant next month, first time I've seen a Consultant in a couple of years. I saw the neuro nurse last year and was asked when would I like the next appointment. So, the year gap, was my suggestion.

 

So, how much money is "utilised" on people in my situation, who turn up when agreed, get asked how it's going, get suggested more drugs for problematic symptoms, but told just keep poking the needle in at a cost of

[Christina]

Di

 

Bravo!! What an eloquent post and I wholeheartedly agree with it, but that's no surprise!

 

The NHS isn't going to 'take a punt' on treatment without positive research evidence and there's not enough of that available yet. As Di's said there is a finite amount of money available and until CCSVI is proven to work through properly conducted clinical trials which may take a fair amount of time, then it would not be reasonable to expect the NHS to fund treatment or screening. Funding of the NHS and how it works is currently being looked at by the new Coalition - maybe they will decide some new ways of doing things but I can't see them advocating spending money on unresearched treatments.

 

For the near future, those who want this treatment will have to pay for it privately I think.

 

Chris x

[colmmc]

The NHS, The MS society , Our Government.

 

ARE NOT doing any trials,Testing Or even looking into CCSVI.

 

This is all I have asked them to do,

 

But there's not enough evidence!

 

Well there won't be !

 

Not till they Look.

 

I've been Liberated

 

Colmmc

[Christina]

But it's not down to the NHS or the Government to do research Colm - it's down to research bodies - pharmaceuticals and universities and other bodies like MS Society etc. They are the ones who need to be interested to take it forward. Maybe it will just take some time to get going.

[colmmc]

But it's not down to the NHS or the Government to do research Colm - it's down to research bodies - pharmaceuticals and universities and other bodies like MS Society etc. They are the ones who need to be interested to take it forward. Maybe it will just take some time to get going.

 

But this is the why unless we do something about it nothing will happen,

The pharmaceuticals are not going to do anything about it , Why would they ? Kill the Golden goose. The MS society get a third of it money for the Drugs companies, And the Government takes it's lead from The MS society , So who's got the power?

If We leave all up to them what do you think the answer will be? More ever expensive drugs to try and keep us in the status Quo ?

 

Theres no money in a cure!

 

BUT

 

I've been Liberated

 

Colmmc

[colmmc]

This is what we are up against

 

 

http://www.fiercebiotech.com/press-release...se-32-year-over

 

 

I've been Liberated

 

 

colmmc

[Bernadette]

The NHS, The MS society , Our Government.

 

ARE NOT doing any trials,Testing Or even looking into CCSVI.

 

This is all I have asked them to do,

 

But there's not enough evidence!

 

Well there won't be !

 

Not till they Look.

 

Quite.

 

How much evidence do they need, anyway? People are having the treatment regardless and improving considerably afterwards.

[happyandy]

I see MS as an autoimmune disease which, in many cases, is exacerbated by CCSVI (perhaps up to 60% of persons with MS according to the University of Buffalo study). I find the

[Christina]

I think we are a long way off a cure for MS unfortunately! CCSVI only improves symptoms as I understand it - how long it lasts for and how much improvement is yet to be seen. We'll have to wait a while to see how things progress for those who've had the treatment.

 

I've read that it is common to have venous abnormalities around the brain and that the body can compensate by increasing blood flow through other vessels. People without MS also show these abnormalities so I would agree with Andy that explaining and treating MS is probably more complicated than saying it's one thing or the other.

 

I don't know the figures about how many have had liberation treatment - I'm sure someone will be able to say. Is data being collected on those who've had it and are they being followed up? Are the treatment centres involved keeping data? Colm, at some point will you be asked by the surgeons who carried out your treatment how you're fairing and whether you have continued to improve? Otherwise, if this information isn't being collected how can anyone build a good case for further research and interest?

 

Chris x

Edited 17 Jul 2010, 2:55 pm by Christina

[Tania B]

There are no trials set up in the UK and if set up they take many years. In the meantime, we are offered nothing that claims to slow or halt the progression of MS or effectively relieve at least some symptoms in a significant way.

 

There are drugs that may reduce the number of relapses for people with RRMS by 30% that may, or may not, produce unwanted side effects and which, certainly do not claim to improve MS symptoms. This is what I have read. Please correct me if I have misunderstood.

 

Tania

Edited 17 Jul 2010, 2:57 pm by Tania B

[Christina]

You're right Tania, there are no trials for CCSVI set up in the UK at the present time. There is very little interest being shown here in taking the research forward at the moment.

 

DMDs were said to halt the progression of MS but research is now showing that this is less likely than first thought. A 30% reduction in relapse rate is what is claimed but that's an average figure, so it could be more or less for individuals. MS symptoms are improved by DMDs for those with relapsing/remitting MS just by virtue of not having as many relapses and the severity of symptoms during a relapse is thought to be reduced.

 

Chris x

[Tania B]

Thank you Chris.

 

Tania x

[Dianni]

As I understand it, even Zamboni (sp) advocates that patients who are already taking DMDs should not stop even after liberation so in effect the procedure would not save the NHS any money.

 

John. I see my neuro annually and as I have PPMS then I don't take any DMDs. I always have the option of cancelling an appointment if i don't feel it's necessary to see her. There is far more wastage in the NHS due to people failing to attend appts. Perhaps we should (or the coalition should look) at doing as dentists do (and most other therapists outside the NHS) and charge people who fail to attend. Or what about all those who get a prescription from their doctor only for it to sit in the back of a cupboard then seek further treatment becausse the first lot didn't work?

 

I agree wholeheartedly that the MS Society should be at least contemplating research into CCSVI. They are the body after all with the funding and as you say Colm the power to take this forward. MS societies in other countries are after all funding research. Yes they get a large sum of money from the pharmas, but if the UK follows the current guidelines (as I understand them) then DMDs will continue to be prescribed. There will also be I suspect a sizeable proportion of MSers who either do not have compromised viens or who choose not to go ahead with the procedure anyway and therefore continue to have DMDs.

 

I also think that as much money as the pharmas make from DMDs it is only a small percentage of their income. Lets be honest, far more people contract cancer and have treatment which is way in excess cost wise of DMDs. 33% of the UK population is likely to be affected by cancer compared to 10% of people who are likely to get MS. Of the 10%, many wont be suitable for DMD treatment so I doubt the pharmas would lose either a great deal of sleep, or many stock points should the current treatments suddenly become null and void.

 

How about advocating that the pharmas stop charging exorbatent amounts for their drugs? HIV treatments are a case in point. This would save the NHS millions and would then possibly encourage the pharmas to become in more actively involved in offering other types of treatment such as CCSVI. They could even set up their own clinics in the UK and offer the treatment. I have absolutely no evidence, but I'd like to bet that most of the major pharmas are at least share holders in private medical facilities and it's not like they wouldn't have the expertise to operate such clinics as the fantastic facility you went to Colm. If the clinics were available in the UK even in a private clinic, surely the cost of treatments would be vastly reduced. But all this is dependent upon the government allowing the treatment to become available in the UK and again we come back to how best to make this happen.

 

I'd strongly recommend lobbying the MS society because without their back up it will never get onto the agenda of any body who can provide the service/do the research. The MS society is suppossed to be 'there' to represent members interests. Surely this is in our best interests. Until the MS society sits up and takes notice, then there is I fear no hope for CCSVI in the UK.

 

Hugs

Di

xxx

[happyandy]

Hi Di,

 

There are meant to be 100,000 MS in UK with a population of 60,000,000 so that's 0.00167% of the population if my arithmetic is correct.

Also Biogen who produce Avonex and TSABRI get most of its profits from these two drugs. First quarter revenues for 2010 were $1.1 billion of which $219 million was for TYSABRI and Avonex $593 million.

 

The new targeted Cancer drugs such as Avastin, which are from the same category of drugs as TYSABRI can cost up to

[Bernadette]

...There is far more wastage in the NHS due to people failing to attend appts. Perhaps we should (or the coalition should look) at doing as dentists do (and most other therapists outside the NHS) and charge people who fail to attend...

 

The length of time I've sometimes had to spend in waiting rooms, I wouldn't mind at all if a few people before me failed to turn up! How can a doctor, who is running an hour behind schedule, complain if someone doesn't turn up?! It benefits everyone who is waiting!

Edited 17 Jul 2010, 4:13 pm by Bernadette

[Christina]

I watched online a recent meeting of the MS Society with members and specialists interested in the subject of CCSVI and the MS Society was saying it had money available for research projects if proposals were put forward. There is obviously a process to go through with this. The MS Society non commital about whether CCSVI works but they seemed to be open to the possibility that further research is needed and would look at any research proposals that came forward.

 

It was a interesting meeting and it's probably still available for viewing online if anyone is interested.

 

Chris x

[Lindyloo]

.... CCSVI is postitive.. CCSVI made headlines on Sky News....Lets grab a good opportunity if we have a chance... money spent by the NHS is wasted all the time.....

i know of a girl who has had a tummy tuck!!!! paid by yours truly....WTF is that all about..i think it cost 7,000.... I dont believe in that unless you pay for it yourself out of your own pocket...and do some blimin sit ups!!! how is that not a waste of money????? There are lots of budgets that the NHS pay for that i feel are not urgent.

I am not slagging the NHS either because i dont think this has anything to do with them at present..... i believe its got a alot to do with the MS Societies and other organisations connected to MS... they should be funding , funding , funding and FUNDING research for CCSVI starting with a group of people with MS and not having MS to get scanned???? wot is so difficult about that?? It is a start..

 

As i said previously .... the money that people with MS dont use by taking DMD's the money should be put in a special fund for research for MS.. Forget about the NHS.... not their problem is it.... we should be banging on the MS societies doors.

 

 

lindyxx