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

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby cjbrooksjc » Sat Mar 03, 2007 7:12 pm

xrn: Yes. I don't have a timeframe or know what they are working on, but I do know they are working.

Brooks
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Postby harley2ride » Mon Mar 12, 2007 4:54 pm

To the above posters, as far as I know, nobody heard anything back from anyone. I sent letters and emails to about 20 different sources. I'm starting to believe that even the media is afraid of the pharms...
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Postby cjbrooksjc » Mon Mar 12, 2007 7:30 pm

Harley2ride: Yes, I've noticed it's hard to get anything organized, but that doesn't surprise me much. I'm looking into something; it'll take me a few weeks, but I might have a discussion/reporting vehicle that won't put people off. I'll keep you posted.

Brooks
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Postby xrn » Mon Mar 12, 2007 7:47 pm

[quote="harley2ride"]To the above posters, as far as I know, nobody heard anything back from anyone. I sent letters and emails to about 20 different sources. I'm starting to believe that even the media is afraid of the pharms...[/quote]

:( Sad news, harley

There can be very little point in sending stuff and not following it up. My guess is that no-one on this forum is interested in talking just for the pleasure of hearing their own voices. Can we make a start by proposing a world-wide petition? I am prepared to host the petition on my own website.

As suggested earlier, I would think that it needs to be left open for at least a year and we can then set about to garner as much publicity as we can for the petition, from all of the various media sources. Doing anything has to be better than doing nothing and I have no taste for letting the grass grow under my feet while trying to establish what may be a good strategy. Better strategies are highly likely to present themselves as the petition collects more signatures and begins to gain its own momentum. The precise wording of the petition can be honed by members of this and other forums (by consensus) over the next year.

Since my last missive to the Department of Health in the UK, under the Freedom of Information Act (2000), I have heard nothing from them, not even an acknowledgement of my e-mail communication. Under the UK legislation, I am entitled to a considered reply by the 27th March. If it is not forthcoming, I have a number of channels open to me. A letter to the Prime Minister's Office (probably open and in one of the more scurrilous newspapers here) will be another step, especially given that there is a forthcoming general election. I don't understand how the UK government can flout the law but I sure as hell aim to find out. :wink:

Regards,
xrn
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Postby cjbrooksjc » Mon Mar 12, 2007 8:18 pm

xrn: I'm in. I can lead, follow, or get out of the way; whatever you need. How can I help?

Brooks
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SDRP - Statins Damage Real People and an e-petition

Postby xrn » Tue Mar 13, 2007 4:55 am

[quote="cjbrooksjc"]xrn: I'm in. I can lead, follow, or get out of the way; whatever you need. How can I help?

Brooks[/quote]

Hi Brooks. I have just created an e-petition to the seat of the UK government (the Prime Minister's Office) and I am waiting to see if it is approved. The petition will run for one year and I have asked that signatures can be collected globally. I will report back as soon as I know if we have gained approval and then I can start the publicity campaign. There was a recent road pricing e-petition that garnered 1.8 million signatures in the space of a few weeks.

In any event, I have reproduced the text of the petition below and have called the organisation the SDRP. The abbreviation may not trip lightly off the tongue like some specially created acronyms will but it stands for...

Statins Damage Real People.

I have no wish for the drug companies to assume that the damaged individuals who are complaining about statins are either insignificant or inconvenient statistics... like the poor people who were killed by the recent Pfizer phase 3 clinical trial, that was stopped by an independent monitor last December, and since which Pfizer have been rather slow in telling the world what exactly has happened and who bears the responsibility for it going wrong.

My petition wording follows...

We the undersigned petition the Prime Minister to initiate an
immediate and global moratorium on the prescribing of all
statin therapies. We request that there be an independent
inquiry into the unexpected deaths and the statin related
damage that has affected people who have lost their loved ones
or those who have been damaged permanently by statins.

The pharmaceutical industry is not listening. The medical
profession is not listening. That research into the value of
statins is funded by the statin producers; is unacceptable.

Pharmaceutical companies must be prohibited from funding
clinical research. They should be prevented from discovering
'facts' that underpin the value of their products and create
sales to the organisers of health care provision, world-wide.

We nominate the World Health Organisation as the most
appropriate body to conduct an impartial analyis into the harm
that statins have wrought across the globe.

Petitioners from across the globe are welcome to sign here, so
as to illustrate the extent of the damage done by statins. In
the event of a UK postcode being required to complete the
petition signing, please use 'LU7 4SX'. Thank you. Jeff Cable
for Statins Damage Real People (SDRP)

The wording is plain and undramatic. If there is a refusal to run the e-petition, I am going to need some help with programming the same kind of idea on my own website. I also have some access to really expert computer skills but for now, I will await the response from the UK government. I expect to hear within 7 days. It should not preclude a similar project being run in any other country.

I will donate some space on my own website very soon, once I see what is shaking down, and I can produce a simple button that will provide a link from other websites to sites with a petition. I would like to find out who produces the e-petition software but I don't have time to look right now.

Kind regards,
xrn (aka Jeff)
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Petition

Postby Liz » Tue Mar 13, 2007 5:35 am

:D :) Great idea XRN I for one would sign your petition and I wish you all the very best, thank heavens for people like you that really care about the sufferers from the effects of statins such as myself, without the support from this site I would not be able to help myself reduce the effects from statins, thank you once again, regards Liz :lol: 8)
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Re: Petition

Postby xrn » Tue Mar 13, 2007 9:45 am

[quote="Liz"]:D :) Great idea XRN I for one would sign your petition and I wish you all the very best, thank heavens for people like you that really care about the sufferers from the effects of statins such as myself, without the support from this site I would not be able to help myself reduce the effects from statins, thank you once again, regards Liz :lol: 8)[/quote]

Thanks Liz.

I have discovered that the e-petition software is open source (only 72Mb) and is available from...

[https://secure.mysociety.org/cvstrac/dir?d=mysociety/pet]

It should make it easier to run a petition, if the UK government reject my current proposal for one concerning statins.

Regards,
xrn
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Postby cjbrooksjc » Tue Mar 13, 2007 12:23 pm

xrn: Great idea! We, in the US, have no similar vehicle (I am aware of) to post our concerns in such a visable, somewhat Gov'tally underwritten manner. I have formally lodged my complaints with The US Drug Admin and the US Senate, but I consider those efforts 'audit trail' documentation; I expect nothing to come of it initially (the wheels of Gov't grinding slowly; if at all). BUT, this looks like it could work. As I said: let me know what I can do to help.

Regards,

Brooks
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The inevitability of statin side effects

Postby spacedoc » Sat Apr 21, 2007 2:36 pm

To someone who understands the mevalonate pathway, all the side
effects we talk about seems so inevitable. Why in the world did we allow the drug companies to do this to us, twenty years ago, when they first conceived statin reductase inhibition, thereby "girding the entire mevalonate metabolic tree? Inevitably, first comes cholesterol inhibition, the original justification for statins, the excess of which cause our terrible cognitive problems; then comes CoQ10 with a huge list of side effects relating to ewnergy, cell wall integrity and anti-oxidation; then dolichols with side effects of altered neuropeptide formation, diminished immunoresponsiveness and glycolysis inhibition that only now are we just beginning to really understand; then provocation of excess tau protein production because of inhibition of normal Glycerl-glyceryl pyrophosphate pathway and finally comes seleno protein inhibition resulting in both myopathy and cognitive side effects. Even twenty years ago our biochemists knew this would happen with reductase inhibition. Why did we allow it to occur? Spacedoc
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Postby cjbrooksjc » Sat Apr 21, 2007 5:08 pm

Doc: Yes! And why do 'they' allow it to continue unabated.

Brooks
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Postby Brian C. » Sun Apr 22, 2007 1:35 am

Brooks: Doc: Yes! And why do 'they' allow it to continue unabated.

Money. What other reason can there possibly be?

Brian.
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Postby BCGuy » Thu Feb 03, 2011 3:24 pm

There could be a darker side to allowing purposeful damage other than money.

A physically damaged society under the illusion of a scientific dictatorship is easily controlled.

Eugenics in control of any dictatorship is a scary prospect. Thats why we need to think for ourselves. 8)

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Postby lars999 » Fri Feb 04, 2011 1:19 pm

Hello!

I have not read this long thread since many months ago, so, following is current perspective of one more statin victim.

It seems quite clear that western medicine is totally focussed on expensive prescription drugs, expensive tests, expensive medical procedures. To justify these "high tech" medical interventions modern medicine needs a large population of very sick individuals, with profligate insurance programs. Any accurate measures of effectivity of these expensive medical practices seem only to come after thousands or more individuals have been badly damaged or killed.

There seems to be more insistance on faster approval of new drugs than on accurate determinations of actual benifits and adverse side effects on actual, representative subsamples of perspective user populations. Clinical trials seem more directed at gaming the approval process. Dubious positive results of clinical trials are hyped to the sky and negatives are suppressed, even denied.

Perventative medicine seems practiced primarily by individuals and sometimes encourged by large coorportations seeking to control health insurance costs and increase worker productivity. Alternative medicine is not a comforting alternative, more a quagmire of conflicting claims -- yet there are some sound treatments among the useless.

The "American Way" is to rely on modern medicine, with its gee-whiz, expensive tools, to make them healthy again, once they have badly damaged their health with bad diets, overeating, slovernly lifestyles, and lack of even basic health monitoring. Then, when seriously ill, they consider it their basic right to have access to the latest and "best" modern medicine has to offer. Insane!!

Has BIG MEDICINE simply turned into a profit-crazy monster, focused on maintaining large populations of seriously sick and unhealthy customers? Has BIG MEDICINE become a tool for keeping populations under control? The inquisitive can poke around and find ample reason to suspect both are correct, at least in one or more countries in recent decades. What is the accurate assessment for the country you live in? Does your country have effective means of controlling BIG MEDICINE, even its worst excesses?

Best Wishes!!
Lars
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Postby David Staup » Fri Feb 04, 2011 1:50 pm

Lars

good post! only one comment: ours is, by far, not the only country engaged in this. most of the western countries, and most of the eastern countries are as engaged in this cholesterol myth and statin drug scheme.

note that countries with socialized medicine also push statins and some even allow over the counter sales!

also the food industry is heavilly invested in the cholesterol myth and in fact it's the food industry that is responsible for the myth and the rise in heart desease...world wide!!!!

David
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Postby lars999 » Fri Feb 04, 2011 5:06 pm

David,

From my perspective, statins are simply the most expensive ripp off in a long list of overly expensive medical treatments, perhaps the most egregiously over prescribed, expensive and hyped drugs ever. I doubt that statins are even the most dangerous/deadly major drugs.

I often read the medical literature in various countries where I understand at least one of the languages. I sometimes rely on non-English language medical reports more than those in English, especially those published in USA. As regards statins, it all sounds the same. And why not? The same huge, international drug companies are active in each of those countries, as well as in most countries.

In a real sense, activities of major drug companies in USA set the standard, perhaps because of the more pervasive "anything goes" attitudes in USA, as well as the much larger market. A lot of what I find in foreign-language medical journals is heavily influenced by what is in USA or "international" medical journals, even to point of parroting. IF anyone ever had any doubts about the GLOBALIZATION of BIG MEDICINE, I suggest that they reexamine your viewpoint.

What I am detecting, correctly I think, is that ordinary doctors, as well as cardiologists, are insanely defensive regarding statin drugs. I have watched doctor after doctor transition from providing rational, more or less acceptable medical advice to talking heads spouting "statins are wonder drugs" insanity. Their insane behavior increases when I nix statins, NONE of them want to know why and especially not to hear rebuttals. Their whole demeaner changes when statins come up. Makes me think they know that "Big Brother" is watching -- like in George Orwell's 1984 and former Soviet Union, etc.

I see a different attitude from doctors that treat victims of statin drug use. They at least have potential financial gain.

Get as many folks as you can off statins, especially those that were prescribed statins because of "elevated" cholesterol. That is the only direct way to affect grossly unnecessary statin use.

I agree with you entirely about the big food companies. I also lump USA's Ag Department, FDA, NIH, etc. into same group. Ditto for comparable groups in many European countries.

Lars
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Postby David Staup » Fri Feb 04, 2011 5:33 pm

Lars
I agree with all you you you say and point to human nature as the "root" cause. I think David Hume said it best here:

"The greater part of mankind are naturally apt to be affirmative and dogmatical in their opinions; and while they see objects only on one side, and have no idea of any counterpoising argument, they throw themselves precipitately into the principles, to which they are inclined; nor have they any indulgence for those who entertain opposite sentiments. To hesitate or balance perplexes their understanding, checks their passion, and suspends their action. They are, therefore, impatient till they escape from a state, which to them is so uneasy: and they think, that they could never remove themselves far enough from it, by the violence of their affirmations and obstinacy of their belief. But could such dogmatical reasoners become sensible of the strange infirmities of human understanding, even in its most perfect state, and when most accurate and cautious in its determinations; such a reflection would naturally inspire them with more modesty and reserve, and diminish their fond opinion of themselves, and their prejudice against antagonists. The illiterate may reflect on the disposition of the learned, who, amidst all the advantages of study and reflection, are commonly still diffident in their determinations: and if any of the learned be inclined, from their natural temper, to haughtiness and obstinacy, a small tincture of Pyrrhonism might abate their pride, by showing them, that the few advantages, which they may have attained over their fellows, are but inconsiderable, if compared with the universal perplexity and confusion, which is inherent in human nature. In general, there is a degree of doubt, and caution, and modesty, which, in all kinds of scrutiny and decision, ought for ever to accompany a just reasoner."

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