Chronische Cerebro-Spinale Veneuze Insufficiëntie

Forum
Het is nu vr 29 maart 2024, 10:42

Alle tijden zijn GMT + 1 uur [ Zomertijd ]




Plaats een nieuw onderwerp Antwoord op onderwerp  [ 4 berichten ] 
Auteur Bericht
BerichtGeplaatst: za 26 feb 2011, 11:18 
Offline
Avatar gebruiker

Geregistreerd: zo 02 mei 2010, 00:10
Berichten: 295
Joan Beal (Cheerleader op ThisIsMS, haar man Jeff heeft MS en is behandeld, Joan is een voorhoede loopster en bijzonder goed in analyses van situaties en informatie dus een gouden mens om aan de CSCVI-kant te hebben) vertelt over een avond in Bologna (Italië, 2009) waar zij in aanraking kwam bij een diner met dr. Gary Cutter die niet wist wie zij was en die nogal onfris uit de hoek kwam over CCSVI en de mensen die daarmee bezig waren (veel kopstukken waren die avond daar aanwezig).

Ik zet de hele Engelse tekst hier even neer, zal later kijken of het vertaald kan worden.

-----------------------------------------------------------------------

Dinner in Bologna by CCSVI in Multiple Sclerosis --- Joan Beal
zaterdag 26 februari 2011

I have not written about this evening, although I have mentioned it to friends and family. I have witnesses who were there, and I wrote down the conversation that night, because it distressed me. This is the truth. I had hoped this would not be an issue, but I now, sadly, believe it is. I feel I have to share it, because I have serious concerns. I had a very disturbing run in with a doctor in Bologna in September 2009. I was at the conference as a patient advocate, the only non-physician, invited by Dr. Zamboni. There was a pre-convening meeting with the lead investigators for CCSVI and neurological guests. Afterward, we gathered for a lovely sit down dinner. I went by myself, since Jeff stayed home in LA to take care of our son.

As I entered the dining area, a congenial man smiled, approached me and introduced himself. We were not wearing name tags, and we introduced each other with first names. He had no idea who I was, and assumed I was a fellow doctor. His name was Gary. I didn't know who he was, but was sure he was a doctor. Our conversation began pleasantly enough...what a lovely location the University of Bologna was, so much history, incredible architecture. And then he said, just out of the blue, "Well, this CCSVI had better not be real, or I'm out of a job!"

We walked into the dining room, and he sat down next to me. Dr. Simka met my gaze across the table, he knew who this doctor was. Gary continued to lead the conversation.

"You know, you have to be wary of these kinds of doctors, he said, gesturing to Dr. Zamboni and Dr. Zivadinov's table..."they aren't scientists, they're zealots." Gary told me he was not a zealot, he was a statistician, he compiled data. He went on, "MS patients are only numbers to me, Joan. I just add up the data." That did it. I couldn't just sit and listen to this blowhard any longer...

I tried not to lose my cool completely, and firmly introduced myself. "I'm Joan Beal, and I brought Dr. Zamboni's research to Stanford University for my husband, Jeff Beal. My incredible, brilliant husband is not a number, he is a living breathing man with MS, and you should know he had two malformed jugular veins which have been treated. And I know people with MS, they are real, they hurt, and they need help. I pray to God no one in your family ever gets ill..that you never have to go through what my family has gone through."

Dr. Simka smiled. He couldn't hear everything across the table, but he could see I had just introduced myself to Dr. Gary Cutter, the statistician from the University of Alabama who has since been compiling and framing the BNAC data. Dr. Cutter looked shocked...he hadn't expected to be chatting up Cheerleader. He went on to back-pedal, to show me family pictures, talk about how much he loved his family, and cared about sick people. But it didn't work, the damage was done. I knew how he felt about this, how he would talk to a colleague about CCSVI. He didn't want this to "be real." He told me he didn't want to lose his job. And I found out why.....

Dr. Gary Cutter received personal compensation from: Alexion, Bayhill, Bayer, Novartis, Consortium of MS Centers (grant), Klein-Buendel Incorporated, Peptimmune, Somnus Pharmaceuticals, Sandoz, Teva pharmaceuticals, UT Southwestern Visioneering Technologies, Inc for consulting, speaking fees & adviosry Boards and for participation in safety monitoring committees from: Sanofi-Aventis, Cleveland Clinic, Daichi-Sankyo, Glaxo Smith Klein Pharmaceuticals, Genmab Biopharmaceuticals, EliLilly, Medivation , Ono Pharmaceuticals, PTC Therapeutics , Teva , Vivus, Univ of Penn, NHLBI, NINDS

Dr. Cutter is on the scientific advisory board for Medicanova, the biotech company that has developed MN-166, a new small molecule treatment for MS. Dr. Cutter is on the board with Dr. Lisak, Dr. Miller and Dr. Barkhof....neurologists who have all written or spoken negatively about CCSVI in MS.

http://www.medicinova.com/html/MS.SAB.html

Here is a 2010 study Dr. Cutter compiled data for--on the safety of Cellcept (an immune ablating drug linked to PML--under an FDA issued warning since 2008)--the whole study was funded by an "unrestricted grant from Aspreva Pharmaceuticals" makers of Cellcept

The study says that Cellcept is a "convenient, oral and now cost-effective immunosuppresant agent"

http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

currently, Dr. Cutter is Director of the UAB site of "CombiRX"

CombiRx is a National Institutes of Health – National Institute for Neurolgical Disorders and Stroke (NIH-NINDS) sponsored multi-centered, double-blind, randomized clinical trial. This trial represents the first federally funded trial to prospectively analyze the long-term progression of relapsing-remitting multiple sclerosis (RR MS) when treated with combined agents and will involve 70+ participating centers and 1000 subjects at sites across the U.S. and Canada. The primary objective of this study is to determine whether combined treatment with interferon beta-1a (INF-b) IM once weekly and glatiramer acetate (GA) SQ daily is more effective than either agent alone in treating RR MS, as determined by reduction in relapse rate.

http://www.soph.uab.edu/rmct/projects/multiplesclerosis

HERE is the article that flipped the switch for me. Dr. Cutter/UAB publicizing the fact that they have "eliminated one cause of MS"

https://www.examiner.com/science-news-i ... nder=print

Perhaps Dr. Cutter isn't biased...perhaps he was only kidding, and simply picked the absolute worst person in the room to joke with. But I am left with serious questions regarding his work as a CCSVI statistician. Shouldn't these facts be seen as a conflict of interest? I worry about doctors who grow comfortable with the lovely million dollar homes, healthy spouses, children and grandchildren, fabulous lifestyles, world travel--and consider sick people merely numbers. I worry.

Would it be too much to ask to have serious INDEPENDENT studies and data compiled without pharmaceutical financial bias? Is this too much to ask?

This is why I am going on the record---

There, that feels better.

Joan


http://www.facebook.com/note.php?note_i ... 0796282297


Omhoog
 Profiel  
 
BerichtGeplaatst: zo 27 feb 2011, 10:12 
Offline

Geregistreerd: wo 05 jan 2011, 14:26
Berichten: 47
Als je dit lees :o wordt je spontaan nog zieker, en van dat soort mensen ben je afhankelijk :?:


Omhoog
 Profiel  
 
BerichtGeplaatst: zo 27 feb 2011, 13:55 
Offline

Geregistreerd: vr 02 jul 2010, 09:36
Berichten: 169
Wat een moedige en krachtige vrouw om zo voor mensen met MS op te komen!

Groetjes


Omhoog
 Profiel  
 
BerichtGeplaatst: zo 27 feb 2011, 16:13 
Offline

Geregistreerd: wo 05 jan 2011, 14:26
Berichten: 47
Ja dat zeker ook!!!, maar dat viel bij mij, ten op zichte van het andere even in het niet.

Denise


Omhoog
 Profiel  
 
Geef de vorige berichten weer:  Sorteer op  
Plaats een nieuw onderwerp Antwoord op onderwerp  [ 4 berichten ] 

Alle tijden zijn GMT + 1 uur [ Zomertijd ]


Wie is er online

Gebruikers op dit forum: Geen geregistreerde gebruikers. en 1 gast


Je mag geen nieuwe onderwerpen in dit forum plaatsen
Je mag niet antwoorden op een onderwerp in dit forum
Je mag je berichten in dit forum niet wijzigen
Je mag je berichten niet uit dit forum verwijderen
Je mag geen bijlagen toevoegen in dit forum

Zoek naar:
Ga naar:  
cron
Powered by phpBB® Forum Software © phpBB Group
phpBB.nl Vertaling