Petition/Letter to en-mass complain to FDA, AMA, etc...

[harley2ride]

As single voices, I doubt that our individual complaints will ever do anything to change this Statin (and other drug) nightmare. I think it would help if we were to come up with a joint/group letter/petition, and sent it out to the media, the AMA, Federal watchdog groups, the Senate, etc, and demand changes. No drug should ever be allowed on the market that can alter someones genetic makeup, especially when they have no way to reverse the effects. If they can't cure it, they should not introduce it. As a group, we could come up with a petition, and we could all add our two cents worth, add all our signatures, and forward it to everyone we can think of. Maybe with nearly 500 names attached, it will get a bit more attention, than just a single name... I would be more than willing to offer time to help write up something, and get advice from everyone on what to change/edit.... Maybe Doc could offer some input and links we could include to show these folks that some people in the medical community also agree that there is a problem here...

[greens4christ]

We are in!
Melissa Green
Brett Green

[bunnylady]

I'm in too- how can I help?

Bunnylady aka Patty

[JL]

My mom currently suffers from short term memory loss due to being on Lipitor (20 mgs per day). Unfortunately, other members of my family are siding with the doctors and refusing to believe that her memory problem is Lipitor-related. I just talked to someone today who began having muscle pain in her legs after being on Lipitor for a month (10 mgs). Just like many of you, she is off the drug but continues to have the pain. I think a grassroots letter writing effort to your local newspapers warning others about the side effects of Lipitor would be a good start. It will rattle a lot of local physicians who just might come forward and help with the larger problem which is prescribing drugs that have major side effects and denying the side effects when they are brought forward for discussion. Just my 2 cents worth.

[gardeneyes]

I think it would be a great idea to join together. Obviously people would take notice if there were enough people coming forward to say they have had problems and show that the effects don't go away when you stop taking the medication. I asked my husband's doctor about that yesterday and he insisted the muscle pain and weakness would end when the medication was stopped. But, we all know that isn't true based on so many people's experiences here.

[shadoww]

[quote="gardeneyes"]I think it would be a great idea to join together. Obviously people would take notice if there were enough people coming forward to say they have had problems and show that the effects don't go away when you stop taking the medication. I asked my husband's doctor about that yesterday and he insisted the muscle pain and weakness would end when the medication was stopped. But, we all know that isn't true based on so many people's experiences here.[/quote]

*********************************************

I have to add my $.02 worth here. Everyone from my primary care dr. to the rheumatologist, cardiolgist and on and on says the same thing. If you're not on them now, then you should not have any pain. Plain and simple, thats their stance. I guess that means the same thing then if you have emphysema and smoke, that when you stop smoking, the emphysema and all smoking damage goes away too, right? Thats what that analogy sounds like to me. Total garbage.

[harley2ride]

I'm thinking that the best way to do any kind of en-masse letter, is for everyone on the forum here to email the same places on the same day. First we need to determine all the right places to email, then we can decide on a date. A flood of emails on the same subject, will get much more attention, than a few here and there, trickling in. So, lets start with who to notify. The ones I know of are
FDA
AMA
Associated Press
MSNBC

What others do you guys know of. Once we get them all, we will post the actual email links, so we are all emailing the same person(s), and hopefully we can bring more attention to the dangers associated with statins.

When you reply to this, use the Quote, so we can keep everything in this one post.

[bunnylady]

We need a letter that we can all e mail off- is anyone here good at letter writing- how about Fran or Harley?

[bunnylady]

Please fell free to rewrite this- Fran help- each person could add a link they have posted on this forum describing their saga- Patty


August 16, 2006

Dear Sirs:

As a member of the wonderful website provided by Dr. Duane Graveline, a former NASA physician, called Spacedoc.com many members have come to the conclusion that there are many of us who have suffered great loss and pain due to Statins, the infamous cholesterol lowering drugs. The stories will bring tears to your eyes. Many have lost their jobs, their lively hood and their independence. In other words for us, the benefits, if any have been proven, are far less than the risk. We want to spread the word about statins.

They rob your body of important biochemicals natural to one’s existence- they deplete CoQ10 and L-Carnitine needed by muscles to work effectively. We are all now dependent on taking these supplements every day . When muscles are depleted your body becomes weak and fatique syndrome overtakes you causing you to sleep double the time needed to replenish your body.

Please read our stories on the forums. For me Stains (Lipitor and Crestor) have robbed me of the whole year of 2006. I suffered greatly and still do from the side effects. I only pray the symptoms will dissipate with time. Contrary to popular assumption symptoms to do not go away simply by stopping the drugs as we are forever robbed of important biochemicals!

Sincerely,

[harley2ride]

Give me a day or two, and I will work up a rough draft letter which will hopefully cover the gamet of symptoms and problems that we and others have had to endure from these drugs. Then hopefully we can edit it and get a good final product, and mass mail it to everyone we can think of. Keep helping coming up with actual links that we can post here, so that we can just click on the links (email links) and all make sure we are sending this out to the same folks at the same time. I'm going to email Dr. Phillips at Scripps Memorial, and see if he can add his two cents worth as well, and hopefully Dr. Graveline will add his John Hancock...

[harley2ride]

Okay,
Here is a start/draft for a letter. Please reply by quoting this post, and add anything helpful, including links I may have missed. I'm still waiting on some info from other sources to add to this ie: info from Dr. Phillips at Scripps, and a copy of a letter he sent me concerning his clinical trial results showing dangers of statins.

To whom it may concern,
There are many of us out here, who cringe every time we see one of the Statin drug commercials on television, or in printed ads. These ads promote the safety of Crestor, Vytorin, Lipitor, Zocor, Pravachol, Mevacor, Lescol, Advicor, and Zetia. In these commercials and ads, they highly praise the effectiveness of their drugs, and then at the end with a few short and down played words, they mention the “RAREâ€

[Dee]

Harley, great letter!

Just my 2 cents worth, but I would leave out the "is cholesterol good, bad, or indifferent" argument, since many of those the letter will be directed to will be of the mindset that cholesterol is bad and needs to be lowered. These readers probably would not even care one iota that there are alternative methods of lowering it if need be. They will not care that we NEED cholesterol. The argument will be lost on them and may distract them from the important critical information about the scope of statin damage.

SO...just assume, from the viewpoint of the intended recipients, that cholesterol IS the boogeyman. Statins are STILL a criminally negligent and dangerous solution to the problem, and the fact that they are still being widely prescribed is inexcusable. That is the point we need to emphasize.

The studies backing up the adverse effects that statins are causing would be a critical addition to validate our complaints and experiences.

Harley, I LOVE the first sentence of your letter! Everytime I see one of those commercials, I utter words I can not repeat here:) Dee




[quote="harley2ride"]Okay,
Here is a start/draft for a letter. Please reply by quoting this post, and add anything helpful, including links I may have missed. I'm still waiting on some info from other sources to add to this ie: info from Dr. Phillips at Scripps, and a copy of a letter he sent me concerning his clinical trial results showing dangers of statins.

To whom it may concern,
There are many of us out here, who cringe every time we see one of the Statin drug commercials on television, or in printed ads. These ads promote the safety of Crestor, Vytorin, Lipitor, Zocor, Pravachol, Mevacor, Lescol, Advicor, and Zetia. In these commercials and ads, they highly praise the effectiveness of their drugs, and then at the end with a few short and down played words, they mention the “RAREâ€

[carbuffmom]

Great job, guys. Harley, I know you spent a lot of time on your letter. Count me in also. I have a diagnosis of ALS pending and I think we need to get the word out. Thanks for taking charge. Debbie

[bunnylady]

Harley- great great! I am SO SORRY that you have such bad muscle damage- and it makes me think mine will not ever get better either- I had my first desire for sex in 3 months 2 days ago and I am paying for it now- I can barely walk and my muscles are killing me- If this never goes away I am taking a whole bottle of pills!

[crandreww]

I have been disabled for 4 years now, due to Neuronal cell Death, likely from Ubiquinone deficiency. I was 34 at the onset of my illness.

[shawk]

Count me in to Harley...

I do agree that you should remove anything in the letter that suggests Chloestrol is good, I agree with the other poster it would be thrown away instantly....or discredited because people by reflex are incliunded to think high Level Cholestrol is "BAD"!


This is becuase the pharmacons(my new pet name for them) have waged a very seductive ad war against us , just like the food companies do with our children and sometimes even with us.

Once the final draft is out and everyone agrees I plan on sending copies to my federal, State and Local elected officials....including my State Medical Board.

Thanks for the hard work.

Scott

[spacedoc]

Want you folks to know that just in the past few weeks I have been asked to add my website to a group of other statin damage oriented sites to demand that our Senate Finance Committee hold hearings on statin drug side effects. This committee is paying much of the cost of these drugs and also paying much of the costs for the terrible side effects some folks have. Bottom line- these senators are VERY interested in the true costs of statins. How else can you judge benefits? Anyhow I have found a link for contact with the senators on the finance committee and will add it here for your convenience.

[http://www.visi.com/juan/congress/cgi-bin/newcommittee.cgi?site=ctc&lang=&commcode=sfinance]

All you folks have proposed excellent letters. I am not going to tell you what to say. Our senators on the Finance Committee will get the message. We all will profit from national hearings on this subject.

Spacedoc, Author of Statin Drugs Side Effects, the misguided war on cholesterol.

[harley2ride]

Thanks Doc!

[Dee]

Doctor Graveline, Harley, and all,

Sen. Charles Grassley is chairman of the Finance Committe. In addition he is the 4th most powerful Senator in Washington.


He has been a thorn in the side of the FDA for sometime, please see this webpage:

[http://grassley.senate.gov/index.cfm?FuseAction=CapitolGains.Detail&CapitolGain_id=291]

He is from my state of Iowa, and I would be happy to contact him and even meet with him if possible.

I would like input from my fellow board members here as to ideas/comments you would have on this.

Thanks! Dee

Edited to say:

What I was thinking is that he is back in Iowa now and then, and maybe I could get a few minutes of his time, and if I had some of your stories (without names or identifying information if you prefer) just to give him, maybe it would help...not sure, I have never met with a Senator before. I can't travel far, and certainly cannot walk due to the statin damage, but if I could manage to catch him near by somewhere that I can physically get to with the help of my husband, I would sure try. Also, maybe there are other Iowan's here? Or anyone else that would be interested in joining me?

[Dee]

Dr. Graveline and group,


I contacted Sen. Charles Grassley's Iowa office today.

Here is the info:

It is better to FAX than to email. Send with subject line ATTN: Finance and Health Committee. 202-228-0578

Be sure to include your statin experience. Also contact any other Senators from your state. Contact your House Representative (s) from your district. Here is a website to find out who they are. Just enter your zip and you will see the list for your area:

[http://www.visi.com/juan/congress/cgi-bin/newseek.cgi]


Unfortunately, due to short notice, I was not able to coordinate a personal meeting with Sen. Grassley during his current town meeting tour here in Iowa. I will be watching his future schedule to try to meet with him or at least his assistant next time he comes back.

Thanks, Dee