Send a message to Cleveland Clinic

[Janice]

Cleveland Clinic has been voted American's top heart center for 13 years in a row. It would surely be helpful for those who have been damaged by statins to send brief emails to let the heart doctors there know what is happening to some statin users. If you would like to do this, their web site is: *www.clevelandclinic.org/heartcenter. Scroll to the bottom of the page and click on contact us, click that you accept the privacy statement on the next page and then you will be ready to compose your message.

Thanks,
Janice

[cjbrooksjc]

Done. Thank you, Janice.

Brooks

[adec]

I'm sitting here early Saturday with so little sleep, so weary from the fight at a very young age, but so vociferous and passionate lately about the dangers of statins. I feel I just haven't done enough to alert people in this information age, and it's making me sick... to the point of sleeplessness. Just what these statins did to my mom and aunt alone is an abomination, a clear violation of their inalienable rights, an attack and blot on all of humanity!

The numerous conversations I've had with doctors this week alone is enough to make one wretch. Cardiologists, neurologists, internists, specialists, general practitioners, nurses, therapists etc., they simply just don't want to hear it. They're too busy slowly killing good people, making their patients get old before their time -- for no good reason -- with their 'proven' medical science, too busy to hear a contrary opinion. Too busy to think outside their secure labs, to stop and read inarguable facts and studies that tear the foundation from their very arguments. Almost as though they suffer from myopia and even only ever see one color when viewing rainbows.

But today, I am going to make it my business to start getting things like this done. In a timely, eloquent, intelligent, professional, gentlemanly way, in a clear and easily understood and digested manner, I want to report and alert these professionals to the dangers of statins, before we completely run out of time. And every day that passes, I DO believe we are running out of time, and it makes me so incredibly sad.

[carbuffmom]

adec:

Whatever you plan to do, I appreciate your effort and your info. Keep up the good work. If I can help, I surely will.

DEB

[mags]

Sure wish I had read these before I started on the Zocor and yes it was a top cardiologist from the Cleveland Clinic who prescribed it and he completely disregarded my complaints.

[adec]

Sorry Carbuffmom, I only today saw your message. I did have a few plans, which were then slightly placed on hold. However, news of Dr. Graveline's recent diagnosis has motivated me into preemptive action. I have one *simple* suggestion that could raise huge awareness in the statin taking population, and those dispensing statins. I'm going to organize everything in a coherent manner, and hope to present the informaton here in the next few days.

[Dee]

Janice,

Here is the link to a thread I started last May about The Cleveland Heart Clinic, and Dr. Nissen....

*http://www.spacedoc.net/board/viewtopic.php?p=4631&highlight=#4631

Please read the entire thread, and I apologize in advance, as you will likely be very discourgaged.

In the end, informing these "experts" of statin adverse affects would probably get the typical response of "muscle discomfort is possible, blood tests monitor for serious effects, and Rhabdomyolosis is a VERY rare, but serious side effect..."

It would take a massive email/mail campaign of thousands of letters, and PUBLICITY to hold them accountable for recieving such information, and blowing it off, which I have no doubt they would do. :cry:

[Dee]

Now, after digesting that, if you all REALLY want to get something done, ask me how.

I have some ideas, and am willing to try, if you all are :D

[cjbrooksjc]

I responded to the Cleveland Clinic months ago. I got a canned response unrelated to my text and an offer to come in for treatment; of what, I'm unsure. I'm afraid they aren't reading their mail.

Brooks

[Dee]

Ok, ok, no one asked, but I am going to throw it out there anyway.

Here's the deal:

In order to get anything worthwhile done, we need to form a central official organization. Something like: Coalition for Statin Victims. Take a look at this:
Social Security Disability Coalition

*http://groups.msn.com/SocialSecurityDisabilityCoalition

Linda Fullerton has done an amazing job, with the help of Stephanie, of fighting the inequities in the SSD organization. This is what ONE po'd person can accomplish, just think what we could do. (Anyone here belong to AARP and see the article in the current issue? YEP, Linda and company)):

Yes, we have forums, newsgroups, bulletin boards. They are great, but have accomplished ZIP in getting anything constructive done, and I have been on this wagon for almost 4 years...and NOTHING.

Sure, we help, support, sympathize, empathize. Unfortunately that is where it ends.

To finally get somewhere we need to form a coalition, where ppl from all the fragmented sites can organize and start to take action.

The concept and mission need to be simply this:

To expose the statin class of drugs for what they are, back it up with peer reviewed studies and research, and gather together the masses that have been damaged by these drugs (There IS power in numbers!!!). To form a plan of action that includes drafting letters, finding the best help in the political arena, and INSISTING that the government form a plan that forces the manufacturers of these drugs to compensate the victims.


The focus needs to be kept on those issues alone.

What we need to avoid at all costs is getting into "what we know and are passionate about" which is how cholesterol is good (not bad), how "off" mainstream medicine is on the issue, how "conned" we have been, all the great alternative natural, holistic, wonderful ways there are to deal with cholesterol...yada, yada, yada. For our purposes, sadly, those issues will distract from the cause. (Yes there IS a place for that, but not within the constraints of our purpose.)

The minute you pull in issues that can be seen as "fringe" or "conspiracy" type of thinking, the eyes of those we NEED on our side, will glaze over. When we start looking like shills for those selling supplements, vitamins, herbs, that is where we loose the battle. Right there, it's done, it's over.


This is just a tiny seed, much work would need to be done. If we don't start taking constructive steps to reach our goal, we will get just what we deserve...nothing. I'm not will to settle for that anymore, ARE YOU?