Will everyone please sign this global petition to WHO!

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

Postby imanut » Thu Apr 05, 2007 3:36 pm

I just signed the petition---noted there were only 18 signatures. Maybe a different title is needed, with it being posted under all the different statin headings, and various headings------------so that regardless of where the reader directs their mouse------------this very important petition would stand out like a sore thumb!!!!
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Postby spaceadmin » Thu Apr 05, 2007 5:38 pm

Keep it here so it doesn't spam the board but both links have now been added to the home page under Surveys and Petitions.
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Postby xrn » Thu Apr 05, 2007 5:41 pm

spaceadmin: Keep it here so it doesn't spam the board but both links have now been added to the home page under Surveys and Petitions.

xrn:
Beaten to the punch. ;) You must have posted just as I was authoring my reply.

Thank you for adding the links to the home page. :D

Kind regards,
xrn
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Postby Cat Mom2 » Thu Apr 05, 2007 7:46 pm

A lot of people do not come here ever day and some do not get on until the week end. If everyone sends it out in emails and just leave it here, it will grow and grow and grow. It will not happen overnight. The way I work takes me away without any internet for 28 days at a time, it was just LUCK that I was home when this came up. I would have been upset if I had missed it too!

Also may I suggest to post it anywhere we can on the internet.
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Postby xrn » Fri Apr 06, 2007 3:56 am

Cat Mom2:
A lot of people do not come here ever day and some do not get on until the week end. If everyone sends it out in emails and just leave it here, it will grow and grow and grow. It will not happen overnight. The way I work takes me away without any internet for 28 days at a time, it was just LUCK that I was home when this came up. I would have been upset if I had missed it too!

Also may I suggest to post it anywhere we can on the internet.

xrn:
Hello, Cat Mom2. Thank you very much for adding your signature. It is most welcome and a first... in that it is from Oz and your age is a stunning indictment of statins. It is seeing the personal stories such as those already provided by the signatories, that will ultimately have the most impact. Just looking at the comments already left, one can see a pattern of devastation that would be more than fair warning, to any clinician who possessed a smattering of intelligence.

Unfortunately, the clinicians will not accept these few anecdotal accounts as sufficient evidence for action. The champions of statin therapy will say that all of the personal accounts about statins were wrong to ascribe the horrible lifestyle changes delineated (that we are seeing written down) to the taking of statins. The wilfully ignorant clinicians are never going to see what is front of their faces. It is my hope that this collection of personal accounts does grow into a huge work that demonstrates clear trends and patterns, that will be easily seen by the analytical thinkers of the medical profession.

Before one presents a case one must have a case to present. Seeing the amount of effort that goes into the discussions on this forum part of the spacedoc site, I can see that there are more than enough people with important stories to tell. I just want to deflect a small amount of the energy that is put into discussing various symptoms, effects and treatments, into signing up to the petition and providing a short 500 word account of their experiences, if they feel able to do so.

As I look at the petition document now, it is a miniscule version of what I hope it will become. The clarity of the personal accounts, when taking them all together, is astonishing and any clinician who would dismiss the 17 personal accounts that exist on the petition site at the moment, would be a fool. I think that you have made a good point about time cycles that people use when viewing things on the internet and the issue about where else the links to the petition appear, is a challenge that I am starting to deal with in some small ways now.

I have written to several people that host sites that are anti-statin, the clinicians from THINCS and some journalists.... and that is just a beginning. You will see a reply from the spacedoc admin to some suggestions (a few posts before this one) about placing the post in all forums regardless of subject matter. I would have hoped that this single thread could be 'stickied' at the top of the statins forum but I think that I have to show some sort of value (to other people) before I can expect that.

The admin have kindly agreed that there is some value to the -ePetition threads and have posted links on the front page to the two threads that have petition information and, for now, I cannot really ask for more (18 signatures from 737 views is not a sea-change in demand, being only 2.44% of the viewers of this thread) given the apparently low amount of interest in signing up to the petition.

On other fronts, I have received a direct communication from THINCS and I have replied to that. They may well be able to point me to other places to put links to the petition. For now... a dialogue is ongoing. I am still having dialogue with two separate sections within the UK Department of Health. The results of that ongoing discussion appear in the thread "making sense out of nonsense", when I get updates, but civil service personnel take their time in replying to me and I have no choices about how I must deal with the issues that are still live at that point.

If the petition, which you have signed, was linked to all useful sites, it would grow more rapidly. I believe that THINCS would be in a good position to help me to get the petition publicised. Of course that does not mean that visitors to this site should not tell other people or journalists. I would hope for more assistance from people here too. Yesterday, I had written another eight letters to various people, who have an interest in statin prescription excesses. These are just the seeds. Some of the petition signatories have e-mailed the link to their friends and this can only be beneficial.

I am very disappointed with the level of uptake from this site but the petition is up and running, I am having an ongoing dialogue with UK government departments, I have been solicited for my views about where I think the petion is going and what I hope to achieve by it... from the THINCS membership, I have written to many interested parties... I don't consider that is too bad an effort for the last 48 hours... :)

Kind regards,
xrn
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current status

Postby xrn » Sat Apr 07, 2007 9:41 am

805 views and 19 signatures = 2.36%

Surely more people are interested in getting recognition from the WHO that statins are harming people in large numbers?
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Postby Cat Mom2 » Sat Apr 07, 2007 10:16 am

I think some people have come here, learned what they needed to learn and do not come back.. Then there are those of us who are motivated to DO MORE in trying to save others from going through what we have went through.

Time is one your side, just give it time. The more time that passes, the more people are going to wake up and seek out answers and that will bring them to one of the sights that the link is posted on. For each day that passes, more will learn...

I truely believe that everyone on these drugs will have the side effects sooner or later and in time, our numbers will grow and grow. One guy I gave the link to who had side effects went to talk to his doctor about it and they changed the meds to another and his symptoms (he thinks) went away.. I know, eventually, he will change his mind. The sad truth is, that in the meantime, this stuff is damaging his body.. I work with another guy who is having all sorts of problems but his numbers are low.... END of story! It is doing what it is suppose to be doing and on to the next subject.. I run into a lot of that.

Just don't be in a hurry. Give it time, lots of time. I think it is doing great so far to have just been started. Keep working on getting the word out. The more we work, the more we will wake up..
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Postby xrn » Sun Apr 08, 2007 4:57 am

I am sure you are right, Cat Mom2. I suppose that my impatience is because I can see how powerful the petition will be, because of the facility to write a (and to read every other) personal account. I really want the petition to grow very quickly because the sooner the document is useable, even in a preliminary kind of way, the sooner medics can be pointed to it and be forced to re-consider the notions underpinning statin therapies. It would mean that less harm is being done to people... who should never have had their personal health and safety compromised in the first place.

I hope to put up my own version of a website very soon so that there is one more site for Google to add to the catalogue of anti-statin information that it already indexes. I am also going to apply for a lay membership to THINCS so that I can be kept up to date with changes and events. I hope that you will understand that the membership of these forums should, by all that's right, have provided easy signatories to the global petition.

I make no apology for posting the current signature and petition status updates for it serves several purposes...

One: it keeps the post at or near the top of the forum list.
Two: it keeps the active icon alive.
Three: time is pressing and though I may have a lot of time to spare, many people will not.
Four: new members and casual readers of the forum should be aware of the petition, even if they do not sign up to the forum.
Five: It will allow the link to be re-posted on the last posting that I use to update the forum membership (and casual spacedoc site viewers) so that they do not have to trawl back through a lot of posts to find the relevant link to the petition site. :)

Enjoy the rest of the holiday season, Cat Mom2.

Kind regards,
xrn

current update: 904 thread views - 20 petition signatures = 2.21% uptake
Petition link: *http://www.gopetition.com/online/11757.html
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Postby Cat Mom2 » Mon Apr 09, 2007 10:33 am

May I suggest that you go to every thread in every section and post a reply asking them to sign this? Most have probably checked the "notify me when a reply is posted" and they will come see who replied. Just do a copy and paste so you would'nt have to type it in every thread.

My sister signed it, she had side effects and didn't realize it until I sent her a list of them and some stories from others. She stopped taking them right away. As so many other people, including myself, you wonder what is happening to you and never realize it is the statin. Each day, our numbers will grow, I an certain of that.
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Postby xrn » Mon Apr 09, 2007 4:38 pm

Cat Mom2:
May I suggest that you go to every thread in every section and post a reply asking them to sign this? Most have probably checked the "notify me when a reply is posted" and they will come see who replied. Just do a copy and paste so you would'nt have to type it in every thread.

xrn:
Hello again, Cat Mom2. I would really love to do what you have suggested, but it would be SPAM and completely unacceptable to the forum admin, even though the cause could be perceived to be a worthy one. It would set a precendent that would cause others to try to SPAM for attention and that cannot be right. I am in e-mail contact with Doc and we may find a suitable solution, by exploration and discussion of the issues and their impact. I wont be taking the forum rules and twisting them to suit myself because that is not the way that things are changed in a civilised world. The rules are put in place to protect the interests of the majority and I must work within them :)

Cat Mom2:
My sister signed it, she had side effects and didn't realize it until I sent her a list of them and some stories from others. She stopped taking them right away. As so many other people, including myself, you wonder what is happening to you and never realize it is the statin. Each day, our numbers will grow, I an certain of that.

xrn:
Great news that your sister is now aware of unwanted effects of statin therapy. Stopping them now will means she that she is no longer exposed to the cumulative unwanted effects of prolonged exposure to statin therapies. Any short-term side effects are hopefully reversible too. It also means that yet one more person is now aware of statin risks and hopefully, your sister will now let her friends know too.

Current update: The petition signatory numbers remain very low and at the present rate of sign up... I estimate that it ought to be possible to gather a total of somewhere between 360~400 signatures from this forum, after a one year period. You don't need to be a statistician to work out that a figure (as small as that) for an initiative that calls itself 'Global' will have absolutely NO IMPACT on the current thinking of the medical profession, or the pharmaceutical industry. The people charged with creating and maintaining healthcare policies for all nations are also not going to be impressed by some 400 complaints gathered from the huge numbers of people who must be taking statins.

The near total lack of interest from the spacedoc forum members (in a forum entitled 'Statin Drugs') is truly astonishing... and very very depressing. Given the facts, it appears to mean that all of the non-signing thread readers (within the Statin Drugs forum) are happy to be taking statins. The other threads in this same forum would have suggested otherwise, if one were just to read only the titles of the threads without looking at any other posts.

To date there have been 1026 thread views and just 21 signatures. These numbers are are the equivalent of 2.05% uptake for the request to sign up. :( :( :(

*http://www.gopetition.com/online/11757.html

Please remove the atserisk before copying the URL into your web browser address field.

Kind regards,
Jeff
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Postby cjbrooksjc » Mon Apr 09, 2007 8:31 pm

xrn: I am PRIVILEDGED to sign your petition. Hopefully we are witnessing the START of a downhill snowball. Sorry to be so lax in my response; some errant piece of oversight code fired and put me in the 'banned' penalty box for a few days; we don't know why. but, I'm Baaack!

Brooks
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Postby xrn » Tue Apr 10, 2007 8:44 am

Brooks:
I am PRIVILEDGED to sign your petition. Hopefully we are witnessing the START of a downhill snowball. Sorry to be so lax in my response; some errant piece of oversight code fired and put me in the 'banned' penalty box for a few days; we don't know why. but, I'm Baaack!

Brooks[/quote]

xrn:
IT gremlins are par for the couse, so don't mind them, Brooks. Having your signature on the petition is not to be undervalued. Your support is most welcome. :)

Current status: 1092 thread views and 21 signatures. The petition take-up has now fallen even further to a new low of 1.92% <deep sigh>
Would all readers of this thread please add their own signatures to the petition at *http://www.gopetition.com/online/11757.html

You will need to remove the asterisk from the beginning of the URL and you do not have to leave any personal details on the petition site.

P... L... E... A... S... E...
P... L... E... A... S... E...
P... L... E... A... S... E...

Sign the petition today. It is probably one of the most useful things that you can do to help all other sufferers of statin abuse, with two minutes of your personal time.

Kind regards,
xrn
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Postby cjbrooksjc » Tue Apr 10, 2007 12:17 pm

xrn: One other person I might suggest you send a brief, personal note is Dr. Peter Langsjoen (Cardiology, Tyler, TX. USA) his web addr is: PeterLangsjoen@cs.com

I'd keep it v. brief and reference the name of the one Dr. who has signed your petition already (with commentary). Dr. Langsjoen, whom I learned about from Ray Holder (UK), is on record as a prominent opponent of the indiscriminent use of Statin drugs. Can he spread your WHO message? Is it in his interest to do so? Des he have the time?... who knows, but I know you may not always get what you want, but you always get what you settle for...IF DON'T ASK, YOU DON'T GET.

Good Luck and Good Hunting!

Brooks
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Postby xrn » Tue Apr 10, 2007 4:55 pm

Great suggestion, Brooks. Thank you! :)
I will put a short letter together and e-mail it to Dr. Langsjoen. I agree with the sentiment that doing nothing is the way to get what you settle for, albeit unintentionally. One person, whom I respect a great deal and who was one of my mentors when I was learning to do difficult stuff, always used to tell me the following...

"If you keep on doing what you have been doing then you are going to keep on getting the same results".

As you can now see... this thread has been 'stickied' (my huge thanks go to Doc for permitting and facilitating this for me) and the view rate has gone up quite a bit, if not the sign up rate.

Current progress: 1547 thread views and 22 signatures. The sign up percentage is now down to 1.42%.

Can you account for such a low sign-up rate, when one could guess that most people who have viewed the thread were having problems that were (in some way) due to statin therapies?

Beats me...

Kind regards,
xrn
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Postby cjbrooksjc » Tue Apr 10, 2007 5:16 pm

xrn: So many people who use the net are looking for info only; for a loved one or a friend, and not interested in participating (at least that has been my experience). The rest are likely timid about the net and "getting on the grid" as they see it. They may be cautious about painting a target on their back... a little hysterical? I suppose, but this topic (statins) is going draw in a large elderly demographic, and a lot of them, or should I say (grudgingly) US, have learned not to raise our heads above the lip of the trench when there is a battle going on.

The bright side is that those who DO sign up are INFORMED, ARMED, and DANGEROUS. I think I'd be happy if the counter keeps going up daily. Wait, I just happened to think: will the text of this note put me on the Homeland Security radar (keywords = target, trench, battle, armed, dangerous, OH! and now Homeland Security)... hmmmm... Guess I'll be on the lookout for black Chevy Suburbans in the neighborhood. 8)

Best Regards,

Brooks
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Postby Dee » Tue Apr 10, 2007 5:25 pm

Brooks, I had the same thought...maybe some are afraid of being targeted in some way? There are some that are signing the petition as "Anonymous" with little or no identifying information...

For goodness sakes folks, be Anonymous if you wish, but be counted!

If people are that afraid to speak up, we have a bigger problem than statins.
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Postby xrn » Tue Apr 10, 2007 6:59 pm

It's a fair point, Brooks, that I had not really considered. I had probably fallen into the easy trap of assuming that the majority of thread views were from people who had registered as members of spacedoc. I then assumed that they had remained registered because of the amount of good information that the site provides regularly. A good example would be the senate vote that Dee has posted a link to. I tried but it is smart enough not to accept my comments. ;)

That reminds me to ask if people could include the URL to the global petition site. Just reading the short accounts of the signatories is a hair-raising experience if you have never come into contact with statins and the damage that they can wreak. It could possibly persuade a wavering senate member, who was unsure of how they were going to vote.

Well... there sure is no substitute for being informed and to be informed is to be armed and dangerous. [xrn checks outside by peeking under the the curtain for an MI6 sedan] 8)

I agree that it is great to have thinking people sign up. The coherence of the short accounts of the signatories is mute testimony to that fact. The majority of people who are affected by the statin therapy policies, are not going to have any coherent voice and thereby, no effective lobby to speak for them. I am not yet convinced that a petition is the only way to achieve some reasonable endpoints but it does remain one of the easier ways that we can get like-minded people to register their point of view.

Kind regards,
xrn
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Postby cjbrooksjc » Tue Apr 10, 2007 8:41 pm

xrn: When I was earning a living; contributing to the cornucopia of plenty and paying into my IRA, I managed people; very intelligent people, who occasionally would try to get as much as they could from the job by doing as little as possible; causing others to work all the harder. I couldn't just 'FIRE' them; I had to build a 'book' which contained all their misdeeds over a period of time; when I had a substantial un-resume, I could put them on an improvement 'plan'; if they failed to live up to the req's of the 'plan' - THEN I could persue dismissal.

My 'book' on statins includes a formal letter to the US Senate Finance Committee, a formal letter to my State Senator, a formal letter of complaint to the US Food and Drug Administration, a rather oblique insinuation into Her Majesty's petition machinations (thanks to you), and as a formal signator to the Statin WHO petition (again, thanks to you), and I'm begining to feel it won't be long before I can consider grounds for a pharmaceutical performance plan. All I have to do is keep my eye on the ball and when it crosses the plate...WHAMMO - a home run. At least that's the way I'm looking at it. It's the only way I CAN look at it. We all just need to 'pull our sox up' and get involved.

Someone I respect a lot once told me "You will win some, and you will lose some, but you will, by God, dress for every damn game!" So, let's all get dressed and play some hard ball with these bastxxds!

I am very grateful to you for your efforts as I'm sure we all are!

Regards,

Brooks
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Postby xrn » Wed Apr 11, 2007 6:31 pm

Hi Brooks. Having a 'book' is a great idea because it provides one with very clear targets that must be reached before the next stage can be enacted. While the win some... lose some... philosophy is quite common, dressing for every game is less so.

As for me... I don't even want to play the game unless I am going to be winning. (perhaps I am just a little un-British in that respect) I mean that I look at every other player and tell myself that I am just as capable of winning as all of the other players.

The thread view count has risen quite a bit now so the sticky thread, that was kindly provided by Doc, has really done a good job in getting the thread seen.

There have been 2425 unique views as of this moment and there are also now 24 signatures (besides my own signature and one from a friend, who I had asked to sign up) so the equivalent sign-up rate of all thread readers is now running at .99%. :(

Kind regards,
xrn
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Postby cjbrooksjc » Wed Apr 11, 2007 7:53 pm

xrn: Is it possible, now that we can no longer edit our own posts, to use the Administrator to put a preface in the heading of the original post that reads something like:

" If you are reading this HMO alert it is imperative you take the time to add your name to the list of supporters; even as an anonymous member your vote counts and will be sorely missed. PLEASE take the time to support this effort! It takes only a minute, and you CAN remain annonymous"

I just think we need to put a 'hook' in the front of our message.

What do you think?

Regards,

Brooks
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