Hello... I would like to introduce myself.

[jayemcee]

Hello All. I am new here and I want to introduce myself.

I have a very high cholesterol level and was prescribed statins in November 2006. Not getting answers (from my medical practitioner) to my questions about statins had caused me to research them a lot more. it is clear that they are highly toxic drugs and, in my opinion, they should not be prescribed to anyone.

To make a long story shorter, I began a global petition, that is addressed to the WHO, and it requests the WHO to initiate an impartial investigation into the risks of statins. there are now nearly 300 signatures but that is not nearly enough.

The e-petition can be found at the following URL...

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

Please read the front page and then when you look at the signatures (click on the signature link) and mouse over the hyperlinks that say 'view' on the same line as the signature name, you will see a commentary that can be up to a maximum of 500 words in support of the signature. If anyone reading this post would like to add a comment, in the form requested on the front page of the petition, I would be very much obliged.

The sad tales are heartbreaking and it is very distressing to see so many people being harmed needlessly by statins. Additionally, I have just completed an analysis of 100 commentaries. I have written the report and put it on my own website at the following URL...

http://talkingstatins.com/page4/page33/page33.html

It was written with the medical profession in mind as the target audience and so the language is not quite as user friendly and accessible, as I would have liked, but it is worth reading to the end.

The analysis revealed that 5 people out of 100 had been diagnosed with ALS. I was shocked by that number because the incidence that is quoted as a global figure is 2 cases per 100,000 people. My first thought was the highly skewed nature of the sample. It is a random sample (of unknown size) but it is self-selecting and I could not say by how much that would affect the probability of finding 5 cases of ALS in any 100 commentaries.

The math is fairly simple...
Incidence of ALS: 2:100,000
Simplified: 1:50,000
Expressed: 1 divided by (50000^5) = 3.2 × 10-24
Answer: 0.0000000000000000000000032

The number '32' with 23 preceding zeros represents the
probability of me stumbling across 5 case reports of ALS in any
random sample.

Given the probability number... I should never
have seen 5 cases collected together in my whole life, even if
I had done nothing but search for such a phenomenon for 20 hours
every day, since the day that I was born and I am 59 years old.

Probability is assumed to be a number between 0 and 1.
If we take 1 to represent the notion that we will die.
Then take 0 to represent the notion that we will live for ever.
The 23 zeros preceding 32 suggests that our chance of dying
is something much less than a merely highly improbable...
it is vanishingly small.

It now seems that neurologists are starting to discuss the possibility that statins may be a contributing factor in the causation of ALS. If anyone has a neurologist treating them, please show them this information. I will gladly make the PDF forms available to anyone who wishes to use them for any purpose whatsoever. It would be really good if the information helps the issue to get noticed and statins to be banned.

e-mail your requests for the PDF files at: webmaster(at)talkingstatins(dot)com

[Please remove the brackets, substitute the words in brackets with the correct symbols and do not put any spaces into the e-mail address]

Any and all of your comments are most welcome
Kind regards to all
jayemcee

[Al]

Interesting. My Neuro told me to get off statins.
AL.

[jayemcee]

Hello Al,
Your neurologist almost certainly will know that statins inhibit the production of cholesterol. Furthermore it is known that cholesterol is an essential component in the production of myelin, which is the substance that the protective sheath around each nerve fibre is made from.

Given just that fact on its own, I am not sure how the medical profession can be surprised when reported adverse reactions to statins include conditions such as; ALS, CIDP, Parkinsonism and Peripheral Neuropathy.

jmc

[patricia1]

My lipids are the last thing on my mind:mrgreen:

[Jamiet]

Shwew,

Those stastics had my eyes crossing for a minute. I had to read it all twice....basically, in a nutshell....ALS is not as rare as claimed.

Statins are what started mine or, or at least accelerated it, but for some strange reason, 30 days into taking advicor, twitches started and all hell has broken loose since then.

I don't worry about my cholesterol any more, it's like 250 - 300....i don't care. I will live much longer without statins than i would with them. They are very dangerous drugs, very.

Anything that you have to monitor your liver levels with, is poisionious.

good day,

jamie

[Sandy McGrath]

hello all,
This is my first post. This is a great site Al. Full of helpful information.

I wanted to mention my father's history and how we feel it is linked to statins. Obviously this could be coincidental, but we don't think so. I tell everyone who will listen, to please reconsider your options prior to starting statins.

My father (83) had been taking Lipitor for 3 years, then started getting weaker about a year or so ago. He stopped taking the drug, then when he felt better, so started taking it again. Several months later (January 07), he then started getting extremely weak and we again took him off it. After a couple of weeks off it, his weakness stopped progressing again. His Doctor then put him on Crestor and he immediately started to weaken again. We took him off but this time he has not stopped progressing. He was diagnosed with ALS this summer and is now declining very quickly.

Hopefully there are enough signatures on the petition to have this looked into. Thank you for creating an avenue for those of us with these concerns to have them heard.

Sandy

[Al]

Hi Sandy. Sorry about your dad but welcome aboard. There is really a growing movement to get all people off statin drugs but it is going to take time. I'm not sure if they caused my ALS but they probably didn't help it.
AL.

[Thumbs Up]

Hi Al, I have a question. My other sister who lives in Bancroft is very ill. She has numerous health issues. Major liver problems and Ovarian Cancer. Now because of the liver disease they could not do chemo or radiation. The question I have is I have been trying to send her Dr. in Bancroft the petition on Statin drugs. She was taking Lipitor and was taken off them however, her liver is bad. She mentioned that she thinks Lipitor damaged her liver. She also complains of weakness in her legs, very tired and seems to fall a lot. She has mentioned to her Dr. about our family history, however, he seems to think she is too young. I have found that a lot of the medical profession is unfamiliar with ALS. I want to send him this article so her can be aware that she does have a 50/50 chance of ALS. A lot of my mothers brothers and sisters were similar, had a lot of major health issues and died in there 50's. My mother is from a family of 17. So many ALS was not dzs because it was masked by other diseases mainly cancer and diabetes. My sister is 54. I don't want another undiagnozed ALS to slip by. What I am trying to do is set up a blog. But in the meantime how can I send the Dr. this document or should I refer him to this website?

[Al]

If you know how to copy and paste you can put it in an email and send it to you or him to print it or send him here. He could probably use some education.
AL.

[jayemcee]

hello all,
This is my first post. This is a great site Al. Full of helpful information.

I wanted to mention my father's history and how we feel it is linked to statins. Obviously this could be coincidental, but we don't think so. I tell everyone who will listen, to please reconsider your options prior to starting statins.

My father (83) had been taking Lipitor for 3 years, then started getting weaker about a year or so ago. He stopped taking the drug, then when he felt better, so started taking it again. Several months later (January 07), he then started getting extremely weak and we again took him off it. After a couple of weeks off it, his weakness stopped progressing again. His Doctor then put him on Crestor and he immediately started to weaken again. We took him off but this time he has not stopped progressing. He was diagnosed with ALS this summer and is now declining very quickly.

Hopefully there are enough signatures on the petition to have this looked into. Thank you for creating an avenue for those of us with these concerns to have them heard.

Sandy

I am truly sorry to learn about your father's ill health, Sandy. There is a wealth of evidence to show that once you are over 50 years of age, statins cannot assist you to enjoy better health. The don't help women at all and unless you are a man and have already got pre-existing heart damage, (secondary prevention) statins are worse than useless. They do not prolong life and they are implicated in many studies that show people with lower cholesterol values tend to dies earlier than people with high cholesterol values.

The University of British Columbia publishes and excellent quarterly journal (Therapeutics Initiative) and in April 2003, it published the results of a meta-analysis of the five largest statin studies. The conclusions were shocking...

"If cardiovascular serious adverse events are viewed in isolation, 71 primary prevention patients with cardiovascular risk factors have to be treated with a statin for 3 to 5 years to prevent one myocardial infarction or stroke."

"This cardiovascular benefit is not reflected in 2 measures of overall health impact, total mortality and total serious adverse events. Therefore, statins have not been shown to provide an overall health benefit in primary prevention trials."

I am very much obliged for your signatures Sandy. The sooner I get sufficient numbers, the sooner I can submit the petition to the WHO. With 5% of the signatories, which I had analysed, developing ALS and the only common factor appeared to be statins, I would like to submit the petition sooner rather than later. I will not stand idle and watch the arrogant medical profession and the rapacious drug companies damaging so many people.

jmc

[jayemcee]

Hi Al, I have a question. My other sister who lives in Bancroft is very ill. She has numerous health issues. Major liver problems and Ovarian Cancer. Now because of the liver disease they could not do chemo or radiation. The question I have is I have been trying to send her Dr. in Bancroft the petition on Statin drugs. She was taking Lipitor and was taken off them however, her liver is bad. She mentioned that she thinks Lipitor damaged her liver. She also complains of weakness in her legs, very tired and seems to fall a lot. She has mentioned to her Dr. about our family history, however, he seems to think she is too young. I have found that a lot of the medical profession is unfamiliar with ALS. I want to send him this article so her can be aware that she does have a 50/50 chance of ALS. A lot of my mothers brothers and sisters were similar, had a lot of major health issues and died in there 50's. My mother is from a family of 17. So many ALS was not dzs because it was masked by other diseases mainly cancer and diabetes. My sister is 54. I don't want another undiagnozed ALS to slip by. What I am trying to do is set up a blog. But in the meantime how can I send the Dr. this document or should I refer him to this website?

Hi Thumbs Up.
Just copy these two links into your email:

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

Analysis:
http://talkingstatins.com/page4/page33/page33.html

If this does not work for you, let me know and give me an address to e-mail the PDF files to.

jmc

[patricia1]

Because of the money the pharmacutical get. There will be no way to prove it. its all about greed. Pat

[jayemcee]

Because of the money the pharmacutical get. There will be no way to prove it. its all about greed. Pat

Yes, Pat, I can hear what you are saying. I have too many people depending on me to just give up and let businesses and the greedy medical practitioners have everything their own way. There will be a reckoning and whether it comes today or tomorrow or next year... it will come. People have been needlessly damaged because the systems that are supposed to protect their interests (I am looking at the FDA in the USA and the badly named NICE in the UK) are failing in their primary aim.

The rise of the internet has helped ordinary people to see that which was previously hidden from them. We can now communicate with each other across continents in nanoseconds, while the obedient internet records our thoughts for all time. Governments can no longer can tell us what we will know, while enforcing their brand of censorship upon us, about and neither can they prevent us from learning more.

Merck new about the depletion of CoQ10 (ubiquinone) for example, when Mevacor was first marketed. They did not include the essential CoQ10 with their medication, despite knowing how essential it was to the body. Their patent application had included a preparation combined with CoQ10. It was a cynical exercise to corner the market and soon they will probably market the combination, hearing how many research workers have recently identified the depletion of CoQ10 and attributed it to statins. These facts are no longer hidden from the public gaze and the sort of viral campaign, that I am trying to assist so that people can be educated about their own health, is now beginning to bear a little fruit.

I write to 25 sites (out of a quarter of million sites that Google throws up) each day and request links. When I change my website this weekend coming, the ALSforums link from this site will be included. Every little effort will help. Having been refused access to the minister for public health, in the UK, many times... today the new minister has received a letter from me.

My current philosophy is that the words that were credited to the Irish statesman, Edmund Burke (1729 ~ 1797) "The only thing necessary for the triumph of evil, is for good men to do nothing" were good for all time. He may not have uttered them but I believe in the sentiment which lies behind the words.

I am fortunate in that I have not been given a Dx of ALS. Our paths have only crossed by dint of an unhappy coincidence and I am just as willing to advocate for any group of patients who are unheard. Many of the people who write to me, have had their lives destroyed by statin drugs. Whether the huge increase in the cases of ALS (that have far exceeded the expected number) that appears, on its face, to be statin related was just a chance finding or not, it requires a thorough investigation by scientists who are committed to finding out rather than eating the swill from the trough with many of their colleagues.

I have been unable to read any of the accounts written by the people on this site, without being deeply distressed. It is difficult to remain calm in the knowledge that drug companies have only money on their corporate minds and individual lives are nothing when compared to the pursuit of profits. My background is that of a health worker for the last 3 decades and, ethically, I cannot see what I do see without taking some form of action.

jmc

[Thumbs Up]

Your post brings back to my mind the frustation when my sister Roberta was fighting ALS. She was in a drug study, when it was stopped they indicated anyone who wanted to continue the drug could contact the drug company and apply for use of the drug on compasionate grounds. I applied to the Canadian Drug board, I cant remember what they are called, but the ones that approve the use of an unmarketed drug. They said ok but when I called the drug company, they said sorry we cant. We are not in the business of saving peoples lives, the drug needs to be marketed first so we can make money. Norma

[Al]

Now that does sound typical.
AL.

[jayemcee]

Your post brings back to my mind the frustation when my sister Roberta was fighting ALS. "We are not in the business of saving peoples lives, the drug needs to be marketed first so we can make money." Norma

Sadly, Norma, this conduct is typical of pharmaceutical companies. What shows them up for what they really are is the amount of money that they will expend on wooing the doctors. Every year the fine pen and the leather bound desk diary are a standard 'gift'/expectation. I have heard doctors being asked if the want to attend a night out at the drug company's expense. A 'yes' will find them flying 300 miles by helicopter to some choice location for an evening of free entertainment. Thousands of pounds already put behind the bar so that 'free' drink can be given to all.

It is insidious and ruinous and it starts when doctors first qualify. This ensures that they remain ensnared for the whole of their professional career. As they grow in clinical experience and reputation, they get more research grants and consultancies than they know what to do with and this is very big bucks. You wont find an easy way to divorce clinicians from pharmaceutical companies until drug manufacturing companies are prohibited from entering the clinical life of doctors and patients.

jmc

[Saubier]

Statins prolong life? Check out these articles:
H Iso, DR Jacobs, D Wentworth, JD Neaton, and JD Cohen, “Serum cholesterol levels and six-year mortality from stroke in 350,977 men screened for the multiple risk factor intervention trial.” NEJM, Volume 320:904-910 April 6, 1989 Number 14.
Muldoon MF, Manuck SB, Matthews KA, “Lowering cholesterol concentrations and mortality: a quantitative review of primary prevention trials,” BMJ (British Medical Journal), 1990 Aug 11;301(6747):309-14.
K. M. Anderson, W. P. Castelli and D. Levy, “Cholesterol and mortality. 30 years of follow-up from the Framingham study.” JAMA, Vol. 257 No. 16, April 24, 1987.
J. D. Neaton, H. Blackburn, D. Jacobs, L. Kuller, D. J. Lee, R. Sherwin, J. Shih, J. Stamler and D. Wentworth, “Serum cholesterol level and mortality findings for men screened in the multiple risk factor intervention trial. multiple risk factor intervention trial research group,” JAMA, Vol. 152 No. 7, July 1, 1992.
Forette B, Tortrat D, Wolmark Y., “Cholesterol as risk factor for mortality in elderly women.” Lancet. 1989 Apr 22;1(8643):868-70.
Ulmer H, Kelleher C, Diem G, Concin H., “Why Eve is not Adam: prospective follow-up in 149,650 women and men of cholesterol and other risk factors related to cardiovascular and all-cause mortality.” J Womens Health (Larchmt). 2004 Jan-Feb;13(1):41-53.
Alan M. Garber, MD, PhD; Warren S. Browner, MD, MPH; and Stephen B. Hulley, MD, MPH, “Clinical guideline, part 2: Cholesterol screening in asymptomatic adults, revisited.” Annals of Internal Medicine, 1 March 1996, Volume 124, Issue 5, Pages 518-531.
Peter Cummings and Bruce M. Psaty. “The association between cholesterol and death from injury.” Annals of Internal Medicine, 15 May 1994, Volume 120 Issue 10. Pages 848-855.
S. Bandyopadhyay, A.J. Bayer and M.S. O'Mahony. “Age and gender bias in statin trials. Q J Med, 2001; 94: 127-132.
Yadon Arad, MD, Louise A. Spadaro, MD, Marguerite Roth, RN, David Newstein, DrPh and Alan D. Guerci, MD. “Treatment of asymptomatic adults with elevated coronary calcium scores with Atorvastatin, vitamin C, and vitamin E.” J Am Coll Cardiol, 2005; 46:166-172.
Krumholz HM, Seeman TE, Merrill SS, et al. “Lack of association between cholesterol and coronary heart disease mortality and morbidity and all-cause mortality in persons older than 70 years.” JAMA 1994;272:1335-1340.
Anderson KM, Castelli WP, Levy D. Cholesterol and mortality. 30 years of follow-up from the Framingham study. JAMA 1987;257:2176-2180.
Foody, JM; Yun Wang; Kiefe, CI; Ellerbeck, EF; Gold, J; Radford, MJ; Krumholz, HM. “Long-term prognostic importance of total cholesterol in elderly survivors of an acute myocardial infarction: The cooperative cardiovascular pilot project.” Journal of the American Geriatrics Society, Volume 51 Page 930 - July 2003.
Michael H. Davidson, MD, Sara B. Kurlandsky, PhD, Ruth M. Kleinpell, PhD, RN, Kevin C. Maki, PhD. “Lipid management and the elderly.” Prev Cardiol 6(3):128-133, 2003.
Brescianini, S; Maggi, S; Farchi, G; Mariotti, S; Di Carlo, A; Baldereschi, M; Inzitari, D. “Low total cholesterol and increased risk of dying: are low levels clinical warning signs in the elderly? results from the Italian longitudinal study on aging.” Journal of the American Geriatrics Society, Volume 51 Page 991 - July 2003.
Andrew R. Lockman, M.D., Andrea D. Tribastone, M.D., Karen V. Knight, M.S.L.S., and John P. Franko, M.D., University of Virginia School of Medicine, Charlottesville, Virginia. “Treatment of cholesterol abnormalities.” American Family Physician, Vol. 71 No. 6, 15 Mar 2005.
Krumholz HM, Seeman TE, Merrill SS, et al. “Lack of association between cholesterol and coronary heart disease mortality and morbidity and all-cause mortality in persons older than 70 years.” JAMA 1994;272:1335-1340.

I don't think so.

[arlie]

good morning-has anyone tried any eastern medical treatments or natural treaments that has slowed the progression of the disease

[clotzman@adelphia.net]

The WHO is already investigating - see Wall Street Journal July 3, 2007 edition. Also, the FDA is also investigating. Go to peoplespharmacy.com and search "Statin Drugs and ALS-Like Symtoms". Add your comments and the FDA may contact you - they contacted my husband this week and he had added his comments last August.

[CindyM]

Hello clotzman. This is a little off- topic but you might want to change your user name. Posting your email on the internet for all the world to see is a little like leaving your personal phone number scrawled on a wall at a busy inter-state rest stop. Lots of folks come here, not just our members. And the web-crawlers can pick up an email address real easy. Not like our PM system, which is protected. Just a hint...Cindy

[jayemcee]

Statins prolong life? Check out these articles:
<list snipped...>
I don't think so.

Hi Saubier, thank you for posting what has effectively become a standard list in the litany of evidence against the ruinous cholesterol/heart hypothesis.

I would have suggested that including the relevant hyperlinks would have assisted the readability for people who are unfamiliar with searching for medical literature. It is a particular bête noire of mine that the medical profession chooses to keep research findings out of the public domain. I guess that just serves to confirm that most research is initiated by pharmaceutical companies and commercial considerations (secrecy) override the duty to the public weal.

I have been an ardent proponent and supporter of the notion that all medical research is indexed in a public repository after being published. It should also be summarised in lay language and it should be freely available to any member of the public who so wishes to establish the science behind any form of treatment which they are offered.

For now, pointing people to medical papers that are well publicised around the internet, is a very good start.

also Jeff