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CCSVI

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colmmc

I know I have a real big downer on the NHS. As an emergency service I would say second to none.

But here are my problems with it.

Its run by & for The Consultants.Who think If you haven't been to Medical school for 7 years you know nothing about nothing.

Everyone in it tell you how hard the work.I've yet to see it.

It's to big, cost to much, and is unmanageable.It to easy for staff to be invisible.

And a real trendy one "Its not customer focused"

Apart from that It needs cleaning.

 

I've been Liberated.

 

Colmmc.

 

Ps another one.

http://watch.ctv.ca/news/latest/liberated/#clip325191


Edited by colmmc

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Christina

Well I worked hard in it Colm, that much I do know - often with not enough staff! I always tried to do my best for patients, treat them with respect and kindness. There are many others who work in the NHS who do the same, and some that don't. It's like any large organisation - there will be good and bad.

 

Overall though, free treatment can't be bad and I think the service has improved in lots of areas. Yes, I know we pay for it through our taxes.

 

Chris x


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

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Procrastinating
Stumbler

So, we have to wait for the scientists to do their research........

 

Who finances the scientists in this respect? There will potentially be no final product to market/sell at an inflated price, to cover the cost of research.

 

The "business plan" would get rejected as not financially viable!

 

So, is the private sector, presently supplying this service, going to provide the evidence that the NHS needs to effectively calculate their Business Plan?

 

I think not! Why would the private sector willingly invite the Public Sector to potentially have a negative impact on their market.

 

The NHS needs to be a bit more flexible, where the Private Sector is protecting it's market, in the absence of the creation of patent-protected products.

 

Does that make sense?


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

Yes It absolutely makes sense,

My Neuro told me 4 weeks ago that Money is available to do the trials into CCSVI but no neuro center took it up. Why ? I've been asking my self that since and the answer's I'm getting are more & more conspiratorial,

I'm sure some In the NHS do work hard,but If when your sat in a waiting room for an appointment

thats an hour overdue, You didn't keep hearing the NHS mantra " have you had your break yet "

I could have more sympathy with the staff.

 

I've been Liberated

 

Colmmc

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happyandy

The time it takes for drugs to get on the market is years even in Eastern Europe. Russia is the first country to allow, cladribine one of the new oral therapies and the race is on to get it into the US market before fingolimod. In a country that has a culture of litigation like the US drugs don't get fastracked for good reason and thats why approval by the FDA can have such a dramatic effect on share price.

 

With regards to Consultants I have no doubt they get freebies, the payment for completing surveys etc. When working for my company, I used to purchase computer equipment in some cases with a value in excess of a million pounds. In my team we never had to put our hands in out pockets for drinks and one of my colleagues was offered a flight in a private jet to Italy to watch a champions league match. It goes on everywhere.

 

I don't buy the conspiracy theory stuff. If the Buffalo study was set up to disprove CCSVI then you would expect that the next study to be duff as well. Plus the researchers would look pretty stupid if an identical study was to prove the Buffalo teams was so inaccurate. I would suggest that research grants for Buffalo would dry up pretty quick

 

 

Andy


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

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Christina

Got to admit John, I am struggling a little with your points there!!! lol!!

 

Usually the way it works and I'm no expert here is that the scientists decide whether they are interested in researching the thing in the first place and they come up with a hypothesis and then look for funding. You can imagine lots of stuff gets researched that never produces usable results. Also if results don't look promising then research tends to get dropped. It's true research can take years - the stuff that's done on drugs takes years. It's certainly not a quick process and it's expensive.

 

Chris x :lol4:


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

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colmmc

Come on Andy you got love a good conspiracy theory?

 

 

Colmmc

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Procrastinating
Stumbler

I think that's my point.

 

Who is going to fund research for a "service", which would be provided by the NHS? There's no payback!

 

:lol4:


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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happyandy

Hi Colm,

 

I spent years researching the JFK shooting and came to the conclusion that it was a secret service agent in the following car who accidentally blew his head off because of the AR-15 having a hair trigger and the fright the agent got when the Oswald shot was fired

 

All to do with who had frangible bullets.

 

Andy


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

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Christina

But if that's the case John, how do we ever get any treatment introduced to the NHS? Loads of neuro research is going on all the time - look at stem cell stuff, lots of it through universities like Imperial College. I may be missing something but I can't immediately see the payback there. The MS charities are saying they have money available for CCSVI research - at the moment no-one is coming forward with a proposal. Maybe scientists here aren't that 'turned on' by researching CCSVI? Who knows, but conspiracy theories often turn out to be wrong and I don't honestly believe it to be true in this case.

 

Chris x


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

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Procrastinating
Stumbler

Stem Cell research is a hotbed for all manners of applications - the stuff that Nobel prizes are made of.

 

CCSVI, is just sticking a ballon into a vein, using a variation of angioplasty?

 

I think you can see which area of research has the most "Qudos" and potential private sector payback.

 

Chris, I'm glad that we can have this depth of discussion. Thanx for your contribution. If we can keep going like this, we can solve the Middle East Crisis next............

 

:lol4:


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

Thanks John. I think I've probably said enough now - I'm sure people can see where I'm coming from! I say 'probably said enough' because I can't promise lol!

 

Chris x :lol4:


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

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Procrastinating
Stumbler

Chris, on something as potentially important as this, it's good to look at all sides of the "argument".

 

Perhaps, business should look at this vehicle, rather than use all manner of meetings/committees, which obfuscates the issue....

 

PS Yes, I had to look up that word as well to ensure it was the right meaning :lol4:


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

Steady John!!

 

Chris x


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

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Lindyloo

Mornin lovely people...

 

a great discussion.. :lol4:

 

I agree with Lottie.... i also agree with some of what Chris is saying - that the bottom line is MORE RESEARCH....

 

Chris i feel the MS Societies and other charities representing MS should be conducting their own research by starting with scanning people.... the overall result from that alone should prick peoples ears up - the Neurologists to start with.... it makes total sense to me and im no expert on this at all...

But Lottie is right... we are in charge of this... If i wanted to start copaxone in the morning...I can ???? No question of money there??? no prob says the doc... heres a script go try it!!! how many scans could i get for the cost of copaxone for a year supply..

 

The MS Society has funding to do this as they get a big Whack from the Pharma companies to promote DMDS.... the pharma companies are not interested or give a toss about CCSVI because they will lose millions..

 

Off to have my toast and boiled egg.. LOL

 

Lindyxxxxx


LindyLoo xx

" This moment will pass " (Bono U2)

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brainless

I think John you have hit the nail on the proverbial head.

 

CCSVI is simply not exciting enought for the research companies/scientists, not enough to get their teeth into and, if I'm cynical, not enough reward?

 

great discussion! Such good arguments on both sides . lots to think about.

 

thank you all,

:lol4:


Lottie, x

 

LIVING IN THE MOMENT

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Procrastinating
Stumbler

Now, this argument could get serious, having just read this recent 4 page "paper"

 

http://www.direct-ms.org/magazines/Embry%2...k%2007%2010.pdf

 

Seems to put more cats amongst the pigeons.........

 

If it's been posted already, sorry, I missed it.


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

oh my God, how about that for timing! dumbstruck.........


Lottie, x

 

LIVING IN THE MOMENT

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Christina

Hi John

 

Don't think it's been posted here. I was aware that DMDs don't seem to slow down disease progression - I've read about it before.

 

I would imagine that people on DMDs would say that they may not experience such severe or frequent relapses as they might otherwise. The figures have always said DMDs lengthen time between relapses by about 30%.

 

To just reiterate what I've been saying all along, we only know this information about DMDs because of research. In the past lots of us were clamouring for DMDs which weren't readily available to all because the NHS wasn't convinced by the figures and the costs. Now we're being told that maybe DMDs are not the answer originally thought. The same applies to CCSVI - the research is needed before we can categorically say it's something that will work for most people with MS. Lots are excited about the prospect and want it to be true, but we have been here before as the DMD stuff just goes to prove.

 

Don't get me started again John!!

 

Chris x :hearts_circle:


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

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happyandy

CRABS dont slow the progression of RRMS to SPMS.

 

What they do is reduce the relapse rate.

 

For the reason in the above article NICE thought the drugs were not value for money.

 

The most effective treatment, based on clinical trials for MS is CAMPATH which the FDA has fastracked

 

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1307

 

 

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 feel that the reason for frustration is the way that we research the treatment of the symptoms, whilst placing the actual cause of this condition in a seemingly inaccessible place.

 

You can always put a plaster on a scraped knee, but how much could you save if you could stop your kid falling in the first place?

 

OK, a cure is nowhere in sight. But CCSVI is addressing, and providing a quasi-cure, albeit temporary, to something which maybe one of this conditions major building blocks.

 

So, which would the Private Sector prefer, continue to treat the symptoms or cure the cause?

 

I think the Private Sector would get the needle with this argument. Perhaps it's time, as I'm getting fed up always feeling their needle!!

 

Profanity as well!!

 

:hearts_circle:


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
CRABS dont slow the progression of RRMS to SPMS.

 

What they do is reduce the relapse rate.

 

For the reason in the above article NICE thought the drugs were not value for money.

 

The most effective treatment, based on clinical trials for MS is CAMPATH which the FDA has fastracked

 

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1307

 

 

Andy

 

Thanks for that Andy - I wasn't up to speed about how the trials for Campath were going. Again, promising looking results.

 

Chris x :hearts_circle:


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

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Christina

It needs to be proved on a much larger scale whether CCSVI is a 'cure' or could be a cure for everyone though John. In any event, it hasn't worked for everyone who's been treated so far. What about the people who don't have the vascular problems but still have MS, as shown in the Buffalo study - it was a signifcant percentage too?

 

We've definitely been round and round this now and starting to go back round it again by the looks!! I don't expect to convince anyone who's truly committed to the theory of CCSVI. I'm open to seeing what happens with research and then make my mind up. Until then, I'll try to keep an open view of things. I just think we have to be wary about 'miraculous' results which could be short term and could actually be affected by people wanting to believe so much in the treatment - power of the mind etc. I truly hope time proves me wrong in my uncertainty.

 

I'm off for a lie down in a darkened room - I'm knackered! lol!!

 

Chris x :hearts_circle:


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

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Tania B

Helpful information. Thank you.

 

TB

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Procrastinating
Stumbler

Totally agree with you Chris that our arguments are now tabled.

 

:hearts_circle:


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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