WE NEED TO FIGHT! ARE YOU WITH ME?

[harley2ride]

Pam,
I like your thinking. I hope that someday there will be enough of us to make a difference. I contacted over 100 lawyers, and actually did all the beginnings with about 20 of them. They all gave up when they saw how much work and money it would take to beat the drug companies. They all told me that if I got to where I was close to death, they would be glad to help then. It is going to take some honest people at each step of the ladder, for this to ever go anywhere. I initiated mailings to multiple places, emails to all the news agencies, fda, watchdog groups, etc.. I don't think we missed much, but haven't really hit utube. That might be a new way to get some attention to our cause, but I feel it will take a few reporters who don't know the word (quit), and an attorney willing to go the distance to do what is right..

[pgrimm]

harley2ride and catmom2,
Thanks for your suggestions and feedback. As the newcomer, I know I seem very naive about wanting to fight the drug companies. I'm beginning to see how one can become hopeless. However, I don't think anyone here is at all ready to give up. I think this is helpful to bounce ideas off each other, until we find out what's effective. As for me, I continue to fight this everyday in my own way, telling everyone I know. I work for county mental health. Iwas talking to a peer who is the supervisor for a senior mental health program. She agreed to start looking into the medications of all her 60+ folks, and watch out for side effects. I was out talking to one of my patients yesterday. He has been on lipitor for awhile, and compains of chrnoic shoulder pain, memory problems, etc. I will talk with his doctor, and am prepared for some resistance. I come in ocntact with a lot of people and never fail to discuss this horrible drug.

I liked the signs in the window idea. I will create a graphic to put on t-shirts and bumper stickers and put them on my cafepress webpage, with no markup in price, hoping that it will catch the eye of some, but also find a way to promote them on other sites. If you want a t-shirt, I'll see if I can also give you my price, not sure, and maybe find somewhere that I can get them printed up even cheaper. I'm thinking the print should be something that really catches the eye. Any ideas for me?

[Dee]

Hi Pam and all,

I am reposting this from a response I made to Pam's "Please Tell Us Who You Are" Poll. This really should have been in this thread. There is no shortage of frustrated statin victims and their family members. The problem is that there is not ONE central gathering place to put those numbers to use. Statin victims and family tend to settle in and make 1 or 2 forums their "home". That keeps the issue fragmented and victims powerless. (Our little "home" forums would continue to be important, not trying to disrespect them in any way.)

OK now for the post mentioned above:


"Pam, I have from time to time, tried to get something organized to address the statin issues that we victims endure.

The one idea I think has some merit is the formation of a coalition. Here is an example of what I am talking about:

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

This is a HUGE site with it's own petition, and these 2 ladies have accomplished A LOT in about 5 years. One recent thing they did was get AARP to write about their cause....and millions of people read that! They have also gotten the attention of congress...you just have to look at the site, you will see what I mean.

The purpose of a STATIN VICTIM COALITION:

To pull all the fragmented forums and groups together, in one place, to start an plan of action. This would take committees to handle various duties, so that no one gets overwhelmed.

Committee list (just some examples):

1) Petition draft and implementation Committee: (a petition would get a head count, and would grow over time, to be presented to Congress, etc)

2) Action plan (Sort of a mission statement, to do list, etc.)

3) Correspondence Committee: Letters are drafted, so that anyone can copy and email, along with their personal experience, to doctors, congress, FDA, etc.

4) Research: this committee would gather and organize research in support of statin victims, with an emphasis on the most unbiased, independent studies available.

5) Publicity: This committee would pursue print and media avenues to expose the vast scope of the statin issue.

6) Legal: to make sure we take all the right steps in our journey, investigate class action suits, etc.

Pam, that is just a start, very rough, I know...but truly what I believe it will take to really get any where with this issue.

There is power in numbers. We have the numbers, just not the organization OF those numbers to accomplish what is needed."

[pgrimm]

So I'm game. I hate feeling like a powerless ONE, it makes me weary and weak. There is always strength in numbers. How to direct people to a website, I'm not sure how to accomplish that. I will talk with my son. He's a website developer in San Francisco. I'm sure he'd be helpful.

Bill talked on the phone today with Dr. Golomb. Hey, I said I'm serious about getting something done here. She will call back tomorrow to give him an appointment at the VA in La Jolla. The one we had last week was a joke. They did another stupid blood test to check his CK level, I told them it already came out normal. I asked for a muscle biopsy, but the doctor was "too concerned about the damage it would do to him". Yeah, right. They also called today and offered to give him an appointment with the pain clinic. He said he didn't want to go. Dr. Golomb told him that was a good choice. More drugs, I think not.

Okay, so step one in this coalition, I will check out the sites you gave me and do a little research. Sounds like you're my man for the job. What you say makes so much sense. This entire forum is fragmented, and for various reasons that can be good. But I'm thinking that regardless of which drug, they're all poison with the same results. Let's keep talking!

[pgrimm]

By the way, Dee, did I tell you that I am a social worker/supervisor? That ought to give me some credibility. I returned to the Social Security website on MSN. I'll open the forum tonight. I will count on all your stories to round out this website we need to fight our battle. We need to put faces on it, as well, nothing better than personalizing a cause. I hope people aren't too shy to provide me with some photos. Sorry, but before and after shots are a classic for getting people's attention. There won't be anything easy about this. But you know, it's not easy to sit here and feel sorry for ourselves. I'm not the type, I have to do something, and obviously, so do you!

[Biologist]

From the book "Mistakes Were Made (but not by me)" by Carol Tavris and Elliot Aronson, 2007, pages 218 - 220:

"We want to hear, we long to hear, 'I screwed up. I will do my best to ensure that it will not happen again.' Most of us are not impressed when a leader offers the form of Kennedy's admission [regarding "The Bay of Pigs" apology cited in the preceding paragraph, where JFK accepted full responsibility] without its essence, as in Ronald Reagan's response to the Iran-Contra scandal, which may be summarized as "I didn't do anything wrong myself, but it happened on my watch, so, well, I guess I'll take responsibility." That doesn't cut it. Daniel Yankelovich, the highly regarded survey researcher, reports that although polls find that the public has an abiding mistrust of our major institutions, right below that cynicism is a "genuine hunger" for honesty and integrity. "People want organizations to operate transparently," he says, "to show a human face to the outside world, to live up to their own professed standards of behavior, and to demonstrate commitment to the larger society.'"

"That longing to hear authorities own up, without weaseling or blowing smoke, underlies the recent movement in the health-care system to encourage doctors and hospitals to admit and correct their mistakes. (We are talking about honest mistakes, human error, not about repeated acts of incompetent malpractice.) Traditionally, of course, most doctors have been adamant in their refusal to admit mistakes in diagnosis, procedure, or treatment on the self-justifying grounds that doing so would encourage malpractice suits. They are wrong. Studies of hospitals across the country have found that patients are actually less likely to sue when doctors admit and apologize for mistakes, and when changes are implemented so that future patients will not be harmed in the same way. "Being assured that it won't happen again is very important to patients, more so than many caregivers seem to appreciate," says Lucian Leape, a physician and professor of health policy at the Harvard School of Public Health. "It gives meaning to patients' suffering.'"

"Doctor's second self-justification for not disclosing mistakes is that doing so would puncture their aura of infallibility and omniscience, which, they maintain, is essential to their patients' confidence in them and compliance. They are wrong about this, too. The image of infallibility that many physicians try to cultivate often backfires, coming across as arrogance and even heartlessness. "Why can't they just tell me the truth, and apologize?" patients and their families lament, In fact, when competent physicians come clean about their mistakes, they are still seen as competent, but also as human beings capable of error. In one of his essays on medicine for the New York Times, physician Richard A. Friedman beautifully summarized the difficulties and benefits of owning up. "Like every doctor," he began, "I've made plenty of mistakes along the way." In one case, he failed to anticipate a potentially dangerous drug interaction, and his patient ended up in the intensive care unit. (She survived.) "Needless to say, I was distraught about what had happened," he says. "I wasn't sure what went wrong, but I felt that it was my fault, so I apologized to the patient and her family. They were shaken and angry, and they quite naturally blamed me and the hospital...but in the end they decided this was an unfortunate but 'honest' medical error and took no legal action." The disclosure of fallibility humanizes doctors and builds trust, Friedman concluded. "In the end, most patients will forgive their doctor for an error of the head, but rarely for one of the heart."

___________

Some interesting psychological insights there. But not enough. Not in this case. First, let's define "in this case." It is this: Since statins -- which properly prescribed would barely amount to "orphan drugs" -- are being prescribed to anyone and everyone as standard practice among physicians, where is the mistake? What did your doctor do wrong in damaging/ruining your health? After all, it's standard practice; it's the norm, Where's the downside for the physician under these circumstances, even if he knows better. And if he does not know better, where's the incentive to learn? Why read or listen to those who have done the research outside the Pharma sponsored propaganda that appears in formerly respected medical journals. Why rock the boat or swim against the tide particularly when it could damage a career? As they say "Its hard to get someone to understand that which their financial well-being depends on them not understanding." Doctors, to my knowledge, CANNOT be sued for the malpractice of prescribing statins under a disproven theory of heart disease known as the "Lipid Hypothesis" even when formerly healthy patients now wheelchair into their offices with all the classic debilitating "side effects" only to leave with a new prescription doubling the dosage. And try to find a doctor who does not hug the conscience mollifying security blanket of an awareness that "wayward doctors" are being sued en masse across the land for having failed to lower a patient's cholesterol when such patients suffer an adverse heart event. It makes no difference that this is a myth. It is a comforting myth. It soothes and justifies.

Besides, if all the doctors are all so wrong, thats perfect because when everybody is to blame, nobody is to blame. (For example, how do you prosecute and punish nearly half the country for helping reelect a richboy sociopath to the highest office in the land? See what I mean? It cannot be done, well not beyond what we all will suffer in the future because of it.) The point is, there is safety in numbers. All together, this is the perfect storm.

So forget the numbers. Address the individual doctor instead. Consider creating a website describing what your doctor did to you in the face of all that is known about stains. Tell the truth, and nothing but the truth -- and that will be more than enough. Name him repeatedly on the website/webpage. Google will pick it up and the site will show up near the top of a Google search under his name. Their reputation may take a beating, and their wallets may take a beating, but it is a small price for them to pay for all the good it could do for others. And after all, helping others is what doctoring is all about. With your help, and by their selfless sacrifice of their reputation, others may be spared in the future (i.e., both patients and newly incentivized doctors.) A new myth may circulate across the land within the profession: "Fellow doctors, we can actually be held accountable by those we damage, just look what happened to this doctor by going to 'his' new website." The first incentive will have been created -- as a counterbalance -- for doctors to actually do the right thing instead of the easy thing. And its no myth.

Biologist

[cjbrooksjc]

Biologist. Thanks for posting this write-up. Though it doesn't provide hope for a quick resolution of our miseries, it does provide hope that there are reliable, caring professionals (such as those some have met in their search) out there; so, our sad situation may have a dauntless supporter or two on the field of battle - God bless 'em! Good catch!

Best,

Brooks

[Biologist]

Brooks,

I agree. Not enough can be said about the few physicians who have done right. To me they are simply superior human beings. To be able to recognize the truth after all the brainwashing and then to act on it is beyond uncommon.

The website idea may be a bit empowering to some -- just knowing that it is an option. Because it is. And it just might do a lot of good, particularly over time. It's a matter of how you go about it. It does not need to be mean sprited. I did something somewhat similar in exposing a regulatory scam years ago. We investigated them for over a year (we investigated investigators) and then busted them -- as a group and individually. The site was well received in the profession by all but the perpetrators. Some of them left their positions. And a chief perp is now in federal prison. The site is still up and it's disclosure of the truth and its "don't tread on me message" has been good for an embattled profession, and consequently, for all of us.

People on this website are making a significant difference. I am sure of that.

By the way, I will eventually get around to writing up my story for the new thread. I have another one to update first.

Biologist

[cjbrooksjc]

I plan to wait until I'm sure I have no hope of complete recovery before I post anything that may be individually harmful, and I agree that any such posting should be thoughtful, informative, and not reactionary. I think another year should do the trick.

I'll look forward to reading your history post.

Regards,

Brooks

[Biologist]

To help your doctor face the fact that he/she is in a brainwashed state and currently functions as the operative arm of an expansive criminal-like enterprise, email this hyperlink to them. This aired for the first time last Friday night, May 16th.

*http://www.pbs.org/moyers/journal/05162008/watch2.html

I will not be busting my doctor (i.e., no website for him, at least not for now). He is not a good candidate. He appears to be on the road to recovery and reform, He is facing the music -- which must be as pleasant as rows of finger nails on a black board. Admitting you have been duped and are wrong about something so important is tough on the ego. Realizing that for years you have charged cash to actively damage the health of those who trusted and depended on you must be a tough pill to swallow. It takes unusual strength of character to own up and change. After my case (coincidence or not), my doctor's whole practice abandoned the lower cholesterol level recommendations pushed by our Pharma-controlled regulatory agencies and amended their preprinted forms (to patients where blood testing results are reported to them) indicating acceptable ranges for cholesterol levels. Also, I asked my doctor -- pointedly -- some months ago if he now at least recommends CoQ10 to his statin patients. He was a bit flustered at the question perhaps and was probably not thinking as clearly because of it, when he responded: "Well, yes, the ones that I am concerned about." I left him to ponder the irony of his response. I'm sure he did. He has no right to have ANY patient on statins who are not advised to take CoQ10 -- just for starters. (In truth, he probably has no right to have any patient on statins period; he is not a cardiologist treating post-surgery heart patients in intensive care.) My question was rhetorical. To help make the point. The point was made. He made it.

I sure never got any such warning. Maybe others now do. We will be on a reciprocal first name basis until I believe that is the case. And probably afterwards too. The title of "Doctor" must be earned from me from now on.

Fatigue had been a problem for years. I was simply not as vibrate as my family and peers, where I might have considered myself a bit above average in years past -- and I had also come to have an appreciation for Viagra. It just did not occur to me that I was the cause of these significant problems (among others) in my life. I figured I just needed to eat better, sleep better and exercise more -- things outside the purview of doctors or anyone else but myself. In reality I was poisoning my body every single day without fail for six years.

And get this: as poorly as I seemed to be aging, if you wanted a fight to the death, just try to take from me the one positive I had going for me and my heath: my statins! Now there's some major physiology! It explains -- in a big way -- why there is currently so little traffic on this website considering that millions and millions of people are slowly and methodically getting beaten down by them. Having succumbed to it's wicked magic myself, and knowing others including a doctor or two, who are still in it's clutches, I believe it is more powerful than many people might possibly fathom: the Perversion of the Placebo Effect.

Biologist

[Biologist]

Rereading my last paragraph, I see that it is confusing and poorly written. As we know, the Placebo Effect is exemplified by someone taking something of no therapeutic value (e.g., a sugar pill in disguise), but believing it a powerful and effective treatment, and consequently, having one's health (or condition) improved for psychosomatic reasons rather than for any pharmacological reason (or the perception of improvement whether it is objectively measurable or not). It can be a beneficial "treatment" for some. Voodoo, but effective sometimes. What I am calling the "Perversion of the Placebo Effect" is this phenomenon I experienced of believing I was benefiting from the very drug that was actually causing my problems. That's very different. As poorly as I seemed to have been doing while taking statins, my concern was how much worse off I would be without them! I, like others, succumbed to the wicked magic of the "Perversion of the Placebo Effect."

[cjbrooksjc]

Biologist: Thank you for posting this interview. Moyers is one of my favorite journalists, and I'm surprised I missed this. Today has not been a good one for me, and this interview makes me angry enough to consider violence. Still... I thank you. I enjoyed it immensely.

Best,

Brooks

[baxterclaws]

Thoughts on increasing awareness:

Youtube, already mentioned, is a good idea. Another possibility is digg.com, a social networking site organized around submitting interesting news and information. Obscure information can quickly become well known on these sites, but not without considerable effort. The trick to breaking into the consciousness of these vast communities is being socially prominent, having lots of online friends and contacts. So, if anybody knows any big internet nerds, with large facebook/myspace/youtube/digg presences, try making an impassioned plea for help. Another possibility: social justice-themed blogs, which might take up the cause. These sites (as well as social networking sites) tend to be populated by people who are sensitive to issues of corporate greed and sinisterness.

Unfortunately, these communities are mostly too young to care about baby boomer issues, at least for now. How do we get their attention? One opportunity presents itself in the science linking statins to mitochondrial mutations. If we say "Statins cause a COQ10 deficiency, which in turn causes muscle pain" this is less compelling than saying "Statins cause genetic mutations in our cells, thereby accelerating the aging process." This second formulation of the issue is hard to ignore, particularly if it can be demonstrated that these side effects are universal (while obviously varying greatly in their severity). Even jaded twenty-somethings might be offended.

Our stories are very moving, and reek of injustice at the hands of corporate greed. Currently, the zeitgeist is on our side, and we should take advantage of our David and Goliath narrative. In my opinion our best shot is media savvy. Any media or new media people in the forums?


Brainstorming other possibilities:

Alternative weeklies such "The San Diego Reader"

Human interest stories on local news networks or in local newspapers

Find a celebrity or athlete with statin problems to be a spokesperson

Convince the Obama campaign that highlighting this issue would be a good way to attack special interests and attract an older demographic

Connect statins to age-related cognitive decline, an increasingly visible and anxiety-inducing problem

Call the side effects "mitochondrial disease" instead of "muscle pain"

Local NPR affiliate programming

Oprah? Deepak Chopra? Dr. Dean Edell? ESPN?

Presumably there are powerful politicians taking statins: can we recruit them? (perhaps not...)

Maybe we can catch the attention of environmentalists, the anti-genetically-engineered-crops set, with our genetically compromised mirochondria

As far as litigation, I recently came across a pertinent article in the Atlantic Monthly. Basically, the article says that it is possible to sue Big Oil (for contributing to global warming) in the same way it was possible to sue Big Tobacco: instead of trying to prove that the conduct of the Big Oil was illegal, try to prove that they conspired to lie about their conduct. Could this same strategy be used againt Big Pharma?

*http://www.theatlantic.com/doc/200806/conspiracy/

[Ray Holder]

Hi Baxterclaws, and welcome to the forum

This is not the appropriate thread for my response, but no other exists on the site for Fibrate lipid lowering damage sufferers. I was on a fibrate for 14 months before being changed over to a statin, and while I did not notice damage, I recall how I lost much of my energy and really had to force myself to start to do almost anything. The strange thing was, that when I started taking the statin, my "get up and go" seemed to come back, but was insidiously eroded over the next 4 years.
Very little is available in the literature on fibrate damage, it appears in the wustl neurological index of problems and general description, but a link to a pubmed page from that index to a study showed about 20 times greater rate of muscle problems arose in those taking a fibrate, than in those taking a statin.
To we statin sufferers, that's a huge increase over our rate of damage, but not much help is given, mostly referring to fat metabolism and carnitine deficiency. I would not expect Q10 to help, as fibrates do not reduce activity in the mevalonate pathway. What dosage of carnitine have you tried, and was it L Carnitine or acetyl carnitine? the former would probably be more effective in your case.

The very much greater use of statins than of fibrates has overshadowed the problems found with fibrates, I know an elderly friend who has been on fibrates for years, and has had many problems, but has supreme faith in her doctors!!! I think the fibrate is responsible for many of them.

Ray

[Brian C.]

Talking of celebrities, I see that Sir Ranulph Fiennes had to abandon his charity Everest climb because of "exhaustion".

Given his medical history he would almost certainly be on a statin. He has been tremendously active and fit up to now in spite of earlier cardiac surgery.
Anybody know him within, say, two or three degrees of separation?


Brian.

[Biologist]

So far, unfortunately, the Statin Effects Study appears to be to be a major farce to me. In short, it appears to be a taxpayer/victim financed (adding insult to injury) piece of propaganda in support of Big Pharma's statin drugs under the guise of an honest critical independent examination of the facts. (NIH funding, in addition to "contributions.") Very disappointing. I may be getting around to summarizing some of my concerns and suspicions in coming weeks or months, if not sooner. So far, I view it as a relatively new and very significant part of the problem. It legitimizes the drugs and the guilty parties and makes light of massive problems caused by these drugs. Here is the very first sentence I read from the website from my first visit to it recently which is found at this URL:

*https://www.statineffects.com/info/adverse_effects.htm

"Most people tolerate these drugs very well. However, as is
true with all drugs, some people develop side effects."

WOW !!

What a way to start off !!

What about the reported 50% of the prescribed patient population who remove themselves from statin medications! An incredible noncompliance rate considering the enormous pressure to stay on them due to the near certainty purported for vying off early death!! Are these patients simply fools, or should we perhaps suspect ADVERSE SIDE EFFECTS.

And that's just for starters. In short, the site struck me as junk -- harsher warnings are found on product insert sheets. I suspect I will be slaughtering it in coming months, unless it improves drasticly. So far it is a disgrace. Shameful.

Where does the site address any of the concerns (read: the debunking) that major "anti-statin" authors have raised in their well researched and documented books?

However, I would be interested in views from anyone who believes it is a helpful honest effort.

On another subject, I suspected Big Pharma had probably infiltrated physician continuing education and Googled it. Yes, they have. Here is one of the first websites I found mentioning the subject. It is educational in and of itself, you might want to read it to see other sides of the arguments and examine motivations. However, be sure to read the very last comment. I can identify with the Anti-Statinator!

Biologist

[Biologist]

Ooops. Left of the hyperlink:

*http://blogs.wsj.com/health/2008/04/18/big-pharma-goes-to-washington/?mod=WSJBlog

BTW, some good comments and suggestions here since my last posting.

Biologist

[gotts1936]

Biologist, I am not sure I agree with you, but as a political junkie for the last 50 years, I know that the " Bad " guys and gals set up phony groups to drain and waste the energy of those committed to any moral issue in an effort to destroy this American nation.

gotts

[baxterclaws]

Thanks for the welcome, Ray! Like others here, I've read and been moved by your story. and thanks for the advice. I am going to give L carnitine another try.

[JL]

Biologist, I totally agree with you. It irritated me to read Golumb's weakly written articles and wondered why no one was as irritated as I was. Thanks.