This Is MS Multiple Sclerosis Community: Knowledge & Support

Have you read the recent editorial in the Lancet about CCSVI? You can access it free at http://www.msif.org/en/research/ms_rese ... rmali.html

Go from that page to the Linkedin cite, then the Elsivier site, register (free) to get the article. If you have too much trouble, I have a copy and you can pm me to get a copy, but try the hard way first. A lot of bother, I know, but I don't check my pms all the time.

I will be interested in comments. I will add mine in a separate entrly later when I have more time.

Fog...this is an "opinion piece" written by a hired gun. She is not a physician, neuro or vascular doctor, she is a "writer and commentator."

Here is her website--
http://www.janeqiu.co.uk/

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I thought she was a scientist from the LANCET journal?

How about her claim that there have been breakthroughs in m.s. that have come and gone? I'm not aware of any that came out of scientific research. Maybe Tovaxin? It seems disingenous to compare CCSVI treatment to bee stings, if that's what she's doing.

_________________
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Here are her "clients" --her word, not mine....
Economist
Nature
New Scientist
Lancet Neurology
Lancet Oncology
Chemistry World (UK)
China Daily
BBC News website
Guardian
Irish Times
Nature Reviews Neuroscience
Nature Reviews Drug Discovery
Diagnostic Imaging Europe
Science Museum's Dana Centre (UK)
British Neuroscience Association
Journal of Experimental Biology
BioMedNet

She's a hired writer.
http://www.janeqiu.co.uk/#clients

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

She lists Lancet as a client, so I assume Lancet hired her. The piece is o.k. writing, but not really excellent writing. You would think with all the excitement that highly qualified neurologists would be standing in line to write a editorial on CCSVI, Why do you suppose Lancet hired her to do this piece? Maybe no neurologist wanted to be a loud nay-sayer on the recored? That can't be it, since there are some loud nay-sayers on the record already.

I think it's Rovian tactics...muddy the water- not with research or facts- but with innuendo and "talking points." That way, no one doctor has to take the negative feedback...I think neurologists were surprised by patient uproar over their dubious responses to Dr. Zamboni's research. They didn't expect any blowback. Hiring a writer allows them to get the message out, without having to take personal responsibility or put their names on it. Their talking points: dangerous, risky procedure, patients dying, unblinded research, media hype, no correlation to MS, we've studied the vascular system before....we all know them by now.
Just my opinion, and I've been accused of wearing a tinfoil hat...so take it for what it is.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Not impressed by it, it was so incomplete, that it was bordering on beeing inaccurate.

_________________
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

.

I pride myself in trying to apply scientific skepticism, and my first very cursory reading of the piece was that it was very skeptical but that is not necessarily bad. However when I read it more carefully, it strikes me as a pure hit piece. Why would the Lancet publish this?
Writers write what will get published and earn them a living; The popular media is a terrible place to get medical information because they sensationalize everything to get viewers; But why would the Lancet publish this?

Examples :

First paragraph: high levels of media hype..."many experts caution (a terrible ploy to credit an anonymous source of alleged authority) against premature promotion...call for objectivity and skepticism.


First actual sentence of the piece: Poor judgment in medicine...fatal consequences...Lives should not be lost but often are (followed by two examples, only one of which died).

hypothesis is yet to be proven, let alone the safety and efficacy of the intervention. (of course the hypothesis is not proven, that is why it is just a hypothesis at this point. The safety and efficacy of the treatment can never be proven before the procedure is ever done. That is why you initially do the procedure. The safety and efficacy of Tysibri was not "proven before patients suffered severe and fatal consequences. Should this have been stopped before anyone was hurt? How would they have known they needed to stop it? Sloppy thinking and writing that should not be in a Lancet editorial.)

"a whirlwind of exaggerated claims and expectations. For example, there is a CCSVI page on facebook; (?!?? how is this an exaggerated claim or expectation? It is merely a sign of great interest, and not even all that great since facebook pages are easy and common these days)( a newsletter dedicated to the syndrome is sent to thousands of patients with MS by Zivadinov's team " (again a sign of great interest, not of exaggerated claims and expectations)

I do not subscribe to the theory that neurologists are evil, money grubbing people out to protect their own income at all costs. Most of them are caring dedicated professionals. I am just at a loss as to why this editorial was printed. Editorials take a position and are slanted, that is why they are editorials. But I really doin't see why this persons opinion was worth printing in this journal. She didn't have anything meaningful to add to the discussion and didn't accurately inform the conversation.


Well, enough, yea too much of my ramblings.

Pretty good ramblings, Fogdweller !

ozarkcanoer

Good evaluation of the Lancet author , JB . I am surprised that this respected journal allows op ed's by non medical professionals .

Can anyone pen a future article ? Perhaps Bob ?

Thanks for exposing this nonsense. I'll have to give the article a pass. And read all future Lancet articles with greater caution .

''Those that oppose '' continue to fall on their faces

One would think T-t-O would be eager to round up 100 ms patients , angio them , and see for themselves if CCSVI has any merit. Oh wait ...they do not have surgery skills ...darn ...only have opinions to offer .

As we all can see .....they fear the outcome. And much prefer to critic from outside the operating theatre..or as Dr. S stated ...have they ever held a lancet ? And as Dr. Zamboni clearly said ...placebo ? ...not after 3 years.





Mr. Success

The neurologists keep saying that we should remain sceptical, as there has been so many promesing treatments the last 3 decades, and they all turned out to me ineffective when studied further.

I have been ill now for 8 years, and there has not been that many treatments that shows alot of promise, apart from Tysabri, and they are pushing that very hard.

I'm just wondering if anybody knows what treatments they are talking about. LDN has not shown any difference in results then placebo, my neuro is saying, so I suppose that is one possible treatment that has "failed" the test. But what are all the others? Different diets?

I'm not counting beestings, healing, reflexology, snakebites, foot-spas etc. I'm talking about different treatments and idea launched by professors and univerities, and well acknowledged hospitals and researchers around the world. Is there that many that has failed?

_________________
<div>I have lived with ms for 8 years. The last year has been hell, I've gone from shite to even worse every single month, until my liberation in May. </div>

I agree. Though after living with MS for 17 years I am not sure if I can take any more surprises.

BTW, I liked the following Mike Moore's letter to George Bush ...

http://www.desitwist.com/freedom-castle ... 15244.html

Honestly, would someone believe that M. Moore could give us a hand on this? Na... Don't think so.
Marc