Sparwood family hope for miracle MS cure

[scorpion]

The word is definitely spreading. Looks like Mexico has got in the act. There is that word cure again. Besides the internet vascular specilaists I have not seen any doctor claim the "liberation procedure" was a cure for MS. How unfortunate.

http://www.thefreepress.ca/article/2010 ... le-ms-cure

[Rokkit]

Besides the internet vascular specilaists I have not seen any doctor claim the "liberation procedure" was a cure for MS.

I guess you're talking about people on TIMS? I don't know of anyone on here claiming CCSVI treatment is a cure for MS. But there certainly are a few here who seem to post mainly with the intent to inflame.

[TMrox]

The article says

A 22-year-old girl with Multiple Sclerosis is hoping $17,000 surgery in Mexico will cure her.

The word 'cure' either came from the patient or from the misinformed journalist.

[ikulo]

Of course journalists will claim that this is a cure. I doubt they would get as many readers if instead of "Sparwood family hope for miracle MS cure" they wrote "Sparwood family hope to alleviate some MS symptoms"...

Why would using the word "cure" be unfortunate?

[TMrox]

I've contacted the editor of 'The Free Press' asking to correct the wrong information about 'curing MS'.

You can also do so at:
Letters to the Editor: freepress@shawcable.com

[shye]

Ikulo asks

Why would using the word "cure" be unfortunate?

Because it is NOT a cure!
In order to get CCSVI accepted by IRB's in hospitals, to therefore get the testing and procedure done in the most advanced way that is currently known, and to further advancement thru the published reports, you cannot mislead and call it a cure--that will immediately put a halt to any IRB getting involved.
It is also misleading to any MSer who hears about the procedure from a source calling it a cure.

[shye]

thanks TMrox
done..

[scorpion]

Thanks for the link T. I think we have a found a middle ground.

[concerned]

I think that "stopping progression" (which is thrown around here quite a lot) is just as misleading as "cure" for the time being.

[ikulo]

Ikulo asks

Why would using the word "cure" be unfortunate?

Because it is NOT a cure!
In order to get CCSVI accepted by IRB's in hospitals, to therefore get the testing and procedure done in the most advanced way that is currently known, and to further advancement thru the published reports, you cannot mislead and call it a cure--that will immediately put a halt to any IRB getting involved.
It is also misleading to any MSer who hears about the procedure from a source calling it a cure.

I understand that we have to be cautious about the effects of this procedure, most of which are unknown outside of anecdotal reports. However, I don't understand why calling the liberation procedure a cure in a local newspaper would put an end to IRB approval. It may make the IRB look at the issues a bit closer (and that's a big maybe), but the published evidence is there. If IRBs are taking their cues from local newspaper articles then we have bigger problems. Moreover, you have to put this into context. If the MS society came out calling this procedure a cure, it would be irresponsible and borderline negligent. Who in their right mind would automatically believe an article like this?

In any case, this article does not claim that liberation IS a cure. It merely says that this one particular patient hopes it is a cure. I think it's safe to say we all HOPE it's a cure. The article was fairly balanced overall.

It's so sad that the word "cure" would have such a stigma surrounding it.