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Saturday, October 15, 2011 5:15 PM | CCSVI in Multiple Sclerosis Volg link

I awoke to these comments-- your blog, and the ECTRIMS statement on CCSVI,  was sent to me from around the world.

http://multiple-sclerosis-research.blogspot.com/2011/10/research-ectrims-statement-about-ccsvi.html

Edit--as of 3pm PST, the blog posting has been removed.  But I did save the following quote.

This is from Dr. Giovannoni-

In fact nobody needs to be a vascular expert to assess the CCSVI literature or make a judgement. All you need is common sense. 

 It is a great pity it has taken so much energy and cost so much in research expenditure to finally diss CCSVI. More importantly it has cost several MS'ers their life from having inappropriate CCSVI treatment. We should all learn from this experience.

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First of all, you obviously have not read all of the confirming vascular research, which continues to come in from universities around the world (Buffalo, Stanford, Milan, Rome, Georgetown, Taiwan, etc.)  But what I find most egregious is that you use your blog platform to give your biased opinion to people with Multiple Sclerosis.

Patients and caregivers look to you to provide balanced and unbiased facts on your blog, but your stand today could not be further from unbiased.

 

Since you have decided to make personal and derisive statements regarding peer-reviewed and published research into CCSVI, and have decided to post completely fallacious and opinionated comments on your "blog" regarding this research---

I believe our readers need to know who you are, and what interests you represent in the world of MS research--

First and foremost, you are an employee of the Pharmaceutical Industy and have worked for every major drug company that produces immune modulating MS medications.

Gavin Giovannoni Declared receipt of grants and contracts from: GW-Pharma, Ironwood, Merck-Serono, Merz and Novartis. Declared receipt of honoraria or consultation fees from: Bayer-Schering Healthcare, Biogen-Idec, Eisai, Elan, Five Prime, Genzyme, GW Pharma, Merck-Serono, Novartis, Sanofi-Aventis, Teva-Aventis and Vertex Pharmaceuticals. llecture fees from Bayer-Schering Healthcare, Biogen-Idec, Genzyme, Merck-Serono and Vertex Pharmaceuticals. Declared to be stakeholder of NIL company.

http://www.seronosymposia.org/en/Neurology/Symposia/multiplesclerosisfuturetreatmentsandnewgoals/facultydisclosure/print.html

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You are in the employ of Merck Serono--the company that recently had to pay the US government $44.3 million dollar fee to settle a lawsuit which alleged illegal funneling of money to pay doctors to prescribe their MS medication.  http://www.cbsnews.com/8301-31727_162-20059847-10391695.html

 You have been a salesman for Cladribine---A CANCER DRUG THAT HAD HORRIFIC SIDE EFFECTS.  A DRUG THAT WAS EVENTUALLY DISCARDED.

In 2011--

Facing skepticism from U.S. and European regulators, Merck KGaA has given up efforts to gain approval for the oral immunosuppressant drug cladribine for multiple sclerosis, the company announced.

"We have decided to not pursue further the worldwide approval process of cladribine tablets and to focus resources on other projects bringing benefit to patients with multiple sclerosis," a Merck KGaA official said in a statement.

Cladribine is an established therapy for certain hematologic cancers and has shown significant efficacy as a treatment for MS. But it also had broader, long-lasting immunosuppressant effects that were worrisome in MS patients.

http://www.medpagetoday.com/Neurology/MultipleSclerosis/27207

Here are the ADVERSE EVENTS reported from your trial....

 

Causes of death in cladribine patients included 1 acute myocardial infarction and 1 pancreatic carcinoma in the low-dose group; in the high-dose group, there was 1 cardiorespiratory arrest on the background of pancytopenia pneumonia in a patient found subsequently to have tuberculosis, and 1 patient drowned.

Lymphopenia and leukopenia occurred more frequently in the cladribine-treated groups than the placebo group, 26.7% vs 1.8%, and 7.1% vs 0.5%, respectively, not unexpected given the presumed mechanism of the drug, he noted. There were 4 malignancies, all in the cladribine groups, all in different organ systems. Herpes zoster occurred only in the cladribine groups, Dr. Giovannoni noted, but he added, "They were all dermatomal, and none of them were generalized and complicated."

 

yet here you are, at the same pharma conference-- praising this drug---

April 30, 2009 (Seattle, Washington) — Full results of the Cladribine Tablets Treating MS Orally (CLARITY) trial of oral cladribine (Leustatin, Ortho Biotech) in patients with relapsing-remitting multiple sclerosis (MS) showed a greater-than-50% reduction in annualized relapse rates with both low- and high-dose regimens vs placebo.

"In my personal opinion, oral short-course treatment with cladribine tablets demonstrates substantial benefit in patients with relapsing-remitting MS," principal investigator Gavin Giovannoni, MBBCh, PhD, chair of neurology at the Institute of Cell and Molecular Science at Barts and the London School of Medicine and Dentistry, in the United Kingdom, told attendees here.

Cladribine is already approved for treatment of leukemias and lymphomas. The short-course regimens used in this trial mean that patients with MS would be treated for "5 days, twice a year, or 10 days of therapy a year," Dr. Giovannoni noted.

Top-line results of the CLARITY trial were released in January by Merck Serono (Geneva, Switzerland), and reported by Medscape Neurology & Neurosurgery at that time. Full results were presented here at the American Academy of Neurology 61st Annual Meeting in the late-breaking science session to a packed audience. The study was funded by Merck Serono.

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ECTRIMS is nothing more than a drug convention, for pharmaceutical salesmen and their sponsors.  While you continue to sell these drugs, without understanding the mechanism behind MS progression,  we will sponsor independent research into the vascular connection.

FOUR people lost their lives while on your drug trial, and numerous others were harmed.

 "We should learn from this experience."  Yes, I agree.

Joan