I am so angry. I have just received a research update from the National MS Society. There are certainly indications of conflict of interest, Vonna! Or at least definite bias in reporting.
There are articles about about new drugs along with an article about Dr. Zamboni. On the surface this looks friendly and positive, right? There's a photo of NMSS bigwigs with Zamboni, all smiling. That makes it all the more poisonous as they present CCSVI in the most negative, misleading way possible, as well as taking the chance to stress immunomodulating meds!
They talk to us as though we were sheep!
The articles on drugs tell us that the news on the oral drugs is "wonderful!" despite cancer, deaths, rampant infections, immune dysfunction, horrifying side effects, etc., all of which are glossed over in a couple of PR-style paragraphs.
The Zamboni info, however, is stretched out in a loooong Q&A that is not only incorrect (which only those of us who are steeped in the info would know -- people reading it for the first time would have to accept the NMSS as having correct facts) but seems to have taken every effort to use every possible side effect as a scare tactic.
Warning people about the risk of infection at the puncture site for the catheter? Excuse me, that's just a step up from warning people about the risk of infection when they get blood drawn! I've had two catheter procedures myself -- catheter procedures are done daily on millions of people in the US -- and if they are specifically calling this out you know someone is grasping at straws to discredit Zamboni.
ESPECIALLY when they routinely promote CHEMO, infusions that carry the risk of death from anaphylaxis on the first infusion, PML, future cancers, and on and on . . . not to mentions the risks of infections at the sites of the permanent ports that are usually put in for people who get frequent infusions!
So, in the same newsletter, a couple of chirpy glossed-over paragraphs praising new meds that could kill us and have horrifying side effects vs. a patronizing, incorrect, misleading Q&A warning us of the "dangers" of what we intuitively and logically know is the most promising breakthrough we've seen in our lifetimes . . .
I am so thankful for the Internet.
And I have to say that while I love my local MS Society and its staff and all they have done for me, this little newsletter absolutely destroys my trust in the big machine of the NMSS and any info they pass on.
Thank you, Vonna, for your work!
Thank you, TIMS, for being here!
Thank you, Cheer, for everything!
Thank you, Dr. Zamboni, and everyone who is following in your footsteps!
OK, the newsletter came in my email and the article was entitled "More MS Pills on the Way." It had two links:
http://www.nationalmssociety.org/news/n ... x?nid=2569
"There were three cases of cancer in the low-dose group – a melanoma and carcinomas of the pancreas and ovary. One additional case of cancer occurred during a 6-month monitoring period after the trial ended, and one case occurred of a pre-cancerous cervical lesion."
“These published results are a true step forward in the development of oral therapies for MS,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs for the National MS Society.
http://www.nationalmssociety.org/news/n ... x?nid=2568
A few participants experienced a transient reduction in heart rate and blockage of heart conduction (atrioventricular conduction block) which generally normalized after the first dose. There was a slight elevation of blood pressure starting during the second month of therapy. Macular edema (swelling of the center of the retina inside the eye) occurred more frequently with those on the higher dose of FTY720 in both studies. Elevations in liver enzymes, without accompanying symptoms, were common in those receiving FTY720. In both studies, a small number of serious herpes infections occurred, including two deaths from herpes infections that occurred in the TRANSFORMS trial in people taking the higher dose of FTY720.
“The published results and the company’s application for marketing approval for fingolimod are wonderful news for people with MS,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs at the National MS Society.
There was also an artcle on CCSVI:
http://nationalmssociety.org/news/news- ... x?nid=2206
A: Though this is a decision that patients with MS need to make with their neurologists, we are not recommending experimental endovascular surgery at this time because of known adverse events and at least one death that occurred as a result of the surgical treatment protocol.
For anyone considering endovascular surgery, the following are some of the possible adverse events that need to be considered:
Complications and even death can occur including the risk of infection at the puncture site, risk for damage to the blood vessel, risk of internal or external bleeding if anti-coagulants are used, and, if a stent is inserted in an attempt to keep the vein from narrowing once more, there is a risk that the stent may become dislodged and go to the heart, which could cause death or the need for emergency heart surgery.
(Sorry, no quote from the good Dr. Richert to go with this -- just the long Q&A to show their opinion!! Read it yourselves!)
P.S. By the way, I'm not criticizing anyone who is using or choosing those therapies -- only the way the NMSS has presented things in this newsletter -- everyone makes the choices that work best for each individual!
OK, I came back to my post again. I know it's already too long, but really, think about it. How many deaths from PML? How many malignancies? How many people sick from truly serious side effects?
And they can seriously write that they don't recommend even testing for CCSVI or having a procedure because of the risk of infection from the catheter puncture site?
WHO lives with the disability? WHO pays the research bill? WHO should be making this decision?
OK, I'll go have my coffee now. Ahem.