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

[Harry Kumar]

I have been taking Lipitor (20mg) for 8-10 years and never realized that the short term memory loss I have been experiencing may be the result of Lipitor. I have brought to the attention of doctors over the last few years but they didn't find anything noticeably abnormal in my brain after doing an MRI. I have also experienced some sort of haziness, lack of concentration, focus, and irritable behavior. I have lost so much because of my forgetfull behavior. Even my wife of 20 plus years complains every day that my brain is not the same. Professionally, I am an engineer had my own business and in last few years I have been feeling low energy, lost all motivations, and feel depressed all the time.

[sos_group_owner]

Hi Harry and Welcome to the Forum,

Are you still taking Lipitor?
All the side effects you mention can be (and are most likely) caused by
Lipitor. If you decide to stop taking Lipitor, the recommended method is
to taper off: cut pills in 1/2 and take that 1/2 pills daily for 1 week. Week
2 take 1/2 a pill every other day and week 3, 1/2 pill every third day.

Statins are a potent anti-inflammatory and stopping abruptly can put
you at risk. Dr Graveline's "Statin Alternatives" reduce and prevent
inflammation, are anti-oxidants, reduce platelet stickiness,
control (toxic) homocysteine and have the same anti-inflammatory
affect as 20 mg's of Lipitor, without side effects.

"Statin Alternatives" are NOT intended to reduce cholesterol levels.
Statins (as do statin alternatives) reduce the type of inflammation that
leads to heart attacks and strokes. The fact that statins also lower
cholesterol is "irrelevant".

Please read these articles by Dr Graveline:

Stopping Statins: http://www.spacedoc.net/stopping_statins.html

Statin Alternatives: http://www.spacedoc.net/statin_alternatives.htm

Statin Induced Short Term Memory Loss: Treatment Aspects
http://www.spacedoc.net/short_term_memory_loss.html

The Great Cholesterol Scam:
http://www.spacedoc.net/cholesterol_scam.html

Fran

[golfish]

Hi, On June 25, ABC set up a website re Zocor. They indicated they were considering a program on World News Tonight related to Zocor becoming the generic statin. They requested info from users. I responded with my info and comments but never had any reply. I have today sent them a request for info regarding it's status. In it I stated that there were thousands of us who have had adverse reactions to stains and we were looking for a forum !!!! I will post any info I get back.

[crandreww]

I suffered from a 28 day hospital stay, was nearly transferred to a Nursing home, and endured nearly $300,000 in medical care, including multiple Biopsies, including muscle and Brain. ANd on october 10, 4 years of disability.
I was an RN, and used to believe the drug companies were out to help us. Not any more!!

[harley2ride]

For our mass letter emailing/faxing thing, I would like to see us all submit our stuff on the same day (don't think same time is too important). I'm thinking perhaps September 9th would be good.

Emaill everyone from the FDA, to Oprah.. Senators, Congress, AMA, American Heart Assn. Associated Press, MSNBC, CNN, your local news sources, etc... I will be posting the info from Dr. Phillips (Scripps Memorial), tomorrow (here), from his clinical trials. I will be including those in my letter to all the sources, as well as my personal story from statins. I intend to include information on the dozen or so folks that I know personally (local), who have had issues with statins as well, to point out that 8 out of 12 people I know who take statins, had to stop due to adverse conditions. I hope that everyone does the same. It's important that we don't embelish, and be as accurate and honest as possible, so that we have credibility. I should have an updated copy of the letter I will send, posted by tomorrow. Everyone should write their own letter and relate their own experience and problems.

[Dee]

Thanks, Harley, I had been wondering if there was a date for sending letters.

Also, when I talked to Sen. Grassley's office I was told that so much email comes in, that it is easy for something to get overlooked. She said when you FAX a letter, it much more likely to be seen as the paperwork has to handled physically. I would assume this to be so for many of the recipients you mention above.

Dee

[bunnylady]

Harley - in order for people to do this we need to provide e mail addy's or addresses in they have to go by snail mail- I think we should plan one day just for bombarding Oprah and another day for America Heart assoc, etc- I also think Montel would understand what we are going thru and we should contact him

[harley2ride]

OK. I made all my contacts, with faxing, emailing, and sending actual letters. I will post here if I get any bites. Hope you all do the same. We might even get lucky, and have someone contact the DOC for more information. :)

[rudy]

Harley I am with you, 49 yrs. old , 25 days on crestor, pain all over, can not work full time 9 mos. latter, many tests, tried lots of meds, med bills, drug costs, more detailed info to come. But are there any legal actions we can take? HELP

[cjbrooksjc]

Harley2ride: Been reading this set of posts. Did this mailing/faxing effort ever ammount to anything? Do you know how many people actually made the effort?

Brooks

[xrn]

[quote="cjbrooksjc"]Harley2ride: Been reading this set of posts. Did this mailing/faxing effort ever ammount to anything? Do you know how many people actually made the effort?

Brooks[/quote]

Excellent question! I have read this thread through for the first time (it pre-dated my joining the forum) and my initial thought was that it was USA-centric (I know, I know... many of the drug companies have large operations in the USA) and wondered about a global approach. The notable ommission is the World Health Organisation.

Can we (as a group) raise the issues again (for I believe that to wait is to permit further harm) and this time include the organisations that take some responsibility for public health. The Federal agencies in the USA are just one avenue to pursue. Each country is almost certain to have an agency charged with the care of public health.

What about an online petition where we can all append our signatures? We need to get a sense of how many people have been damaged. Get the appropriate publicity and state that the petition will be open for say... 1year and will include the names of everyone who is or has been affected in any way by statins. Find health sites that will link to the petition site and the radio and TV programs to do with health and get a mention on a regular basis. Look in local newspapers for health articles and ask the editors for a mention. We could devise a standard form of words for these requests, that would take the heat off the requesting person.

Eventually, the petition, the evidence and all related materials could be presented to government agencies, health agencies and the pharmaceutical industry. It would take a lot of organisation but this virtual community is a good beginning. Asking what can we do is OK but translating that into what can I do is easier if there is a clear objective.

I will happily agree to transcribe anyone's account of their problems and turn it into a .pdf file for the archives. I don't mind paying for a large capacity drive to store the information (for eventual construction into a coherent document. What else will people offer?

Kind regards,
xrn

[cjbrooksjc]

xrn: I think you are right on the money! Past experience tells me that the simpler you make a poll, the more involvement you will get from your target community, and the tighter you edit your resultant complaint/requests, the more attention they will get from the intended audience. I've got to run out. Let's give this some thought & get back together. I do; however, think this is one of those "Who's your customer" puzzles, and we should be careful not to omit potential prospects.

Regards,

Brooks

[cjbrooksjc]

xrn: Two things: Are you still gettting email alerts when a post is made on one of the topics in which you are active? I'm no longer getting alerts.

Secondly: Do you know how to use the "Poll" function on this forum. It seems to me there was a selection for that function before (say two weeks ago) functional changes were made to the personality of this web page. I don't know how fleshed out the "poll" feature is, but if it still exists we might employ it in our "data capture" adventure.

Also, I have another idea that is, as yet, unformed... there is a program that allows on-line communications among associates (like an electronic conference room) thru creation of a group ID and individual avatars; one per associate. That way we can hash this out as a group. I'll look into it some more. It may require more techy horsepower than some of us have, and may require a 'beefy-er computer setup than some may have. As I said, it's a work in progress, but I'll iron out the detail and get back to you (and anyone else who might be interested).

Regards,

Brooks

[xrn]

Brooks: "xrn: Two things: Are you still gettting email alerts when a post is made on one of the topics in which you are active? I'm no longer getting alerts."

xrn: - No, me neither. I cannot tell what is the cause form here but quite a lot of the features that are normal to forum use are broken and that may be a large part of the reason. I tried e-mailing the admin some time ago about feature that don't work like the quoting when replaying but as yet there has been no reply.

Brooks: "Secondly: Do you know how to use the "Poll" function on this forum. It seems to me there was a selection for that function before (say two weeks ago) functional changes were made to the personality of this web page. I don't know how fleshed out the "poll" feature is, but if it still exists we might employ it in our "data capture" adventure."

xrn: - Well I have not used this site's poll function but I am familiar with them. So much of the board appears to be borked, that I felt that it would not be good to put the forum site under any pressure caused by normal loads.

Brooks: "Also, I have another idea that is, as yet, unformed... there is a program that allows on-line communications among associates (like an electronic conference room) thru creation of a group ID and individual avatars; one per associate. That way we can hash this out as a group. I'll look into it some more. It may require more techy horsepower than some of us have, and may require a 'beefy-er computer setup than some may have. As I said, it's a work in progress, but I'll iron out the detail and get back to you (and anyone else who might be interested)."

xrn: - I am not too familliar with software that does this kind of thing. I use aim and iChat on my Mac and can hold a four-way video conference with up to four people, simultaneously. Other than that, I have no experience of networking.

Kind regards,
xrn

[cjbrooksjc]

xrn: Well, I have a rather full schedule for the next two days and won't be able to spend any time on this topic, but, the software I spoke of is called "Second Life". Try [http://www.secondlife.com] for some highlights, and click on the headline 'Investors.com' in the left margin for some ideas of how this virtual environment is being used in everyday business. The whole thing is a bit "Lawnmower Man", but I think we might, if it doesn't scare everyone, use this venue as a virtual meeting place to discuss the issue we have been tossing about.

Regards,

Brooks

[vipergg22]

Maybe I missed it , if so I apologize . I think you should add something about neuropathy and the permanent nerve damage these drugs can cause . For anyone who has never experienced this nice permanent side effect consider yourself lucky . good luck with the letter , there is alot of us sufferers out here .

[xrn]

[quote="cjbrooksjc"]All: Sent a note to Spacedoc Admin re: changes/problems with the Specedoc site. The Administrator is working to nresolve them.

Brooks[/quote]

Good to know. I sent a message in december and have never received a reply. I look forward to the site admin making it easier to use. Even the quoting is broken.

Regards,
xrn

[Biologist]

Brooks,

You write in part:

"...I have read this thread through for the
first time (it pre-dated my joining the forum)
and my initial thought..."
--Brooks

I'm reading it for the first time now. I once claimed I had read most of the threads on the forum before starting to post, which was probably about the time you started. Well, scratch that. I'm not so sure any more. Must have said that when the cognitive damage from the statins was at its worst...

Biologist

[cjbrooksjc]

Biologist: Actually, "xrn" wrote the thread you reference; it was in reply to my earlier entry. I had only read Harley2ride's post a few hours before. So, it's all new stuff to the three of us. Still don't know if there was a positive result from that effort, but I suspect not. BTW: I put a post under "Side Effects" under the Statin Drugs index tha gives us (in the US) a means to record formal complaints with the FDA. For whatever earthly good that may do.

Regards,

Brooks

[cjbrooksjc]

Vipergg22: Thanks for your suggestion. Truly, you haven't missed anything... we're still trying to figure out which end of the pencil to use, but I'm sure (when and if we proceed) we will enclose a list of common complaints; yours included.

Regards,

Brooks