Little by little... a small succcess

[xrn]

Hello all,
The internet is a wonderful tool. I am copying the dialogue I have recently had with the European Medicines Agency, a supra-national body that deals with pharmacovigilance (the safety of medicines) throughout Europe.

The dialogue shows that persistence, accuracy of target and concern expressed appropriately, will find an audience that can alter the methods by which we all live. My constant push to publicise my small dealings with these authorities is not so I can be patted on the head and told 'well done' but because once Google indexes the relevant pages, it is information which everyone has access to.

Seasonal greetings to all.
Jeff (aka xrn)

Dear Sir

I acknowledge receipt of your e-mail and the link to the published study. I will bring this information to the attention of the European Medicines Agency's Pharmacovigilance Working Party.

Best wishes

________________________________
From: Jeff Cable
Sent: 17 December 2009 11:31
Subject: Re: This report concerns the safety of statins (now published)

Please forgive me for writing to you again. I have no wish to be seen as vexatious, insane or a person who has a tendency to harass senior officials, who almost certainly must have many tasks to which they must attend.

As you will see from the link under my signature, The report (now renamed for publication) which I had sent to you a few weeks ago, has been published by the Journal of Independent Medical Research. My concern is to prevent needless harm to millions of people who are currently undergoing statin therapy. I am sure you are very busy but nevertheless, I would respectfully request an acknowledgement for this e-mail message so that I can be assured that it has found its way to the correct place.

I have not worked in a clinical setting for nine years and my former broad accesses, to various methods of raising a note of caution, are now closed to me. Potentially, the information which I have stumbled upon is of great significance for future policy regarding statin therapy and for keeping patients safe from iatrogenic harm. I am concerned to think that the report would not be evaluated by experts and it being left to languish.

Kind regards,
Jeff Cable

Cable J: Adverse Events of Statins - An Informal Internet-based Study. JOIMR 2009;7(1):1

*http://www.joimr.org/JOIMR_Vol7_No1_Dec2009.pdf


On 26 Nov 2009, at 10:48, Jeff Cable wrote:


This report concerns the apparent safety of statin medications. Attached are two files. One file is the patient's personal accounts, which provide the information presented in the report. The other file is the informal report.

My concern is that the the number of serious neurodegenerative diseases such as amyotrophic lateral sclerosis has an incidence rate of 1:200,000 and in 351 reports there have been 18 occurrences of ALS and a further 11 cases of Parkinson's and Alzheimer's diseases along with one of each case of progressive supra-nuclear palsy, multiple system atrophy and chronic inflammatory demyelinating neuropathy, which every patient has ascribed to statin therapy. One healthy patient had apparently developed ALS within 6 weeks of commencing statin therapy. Of course there are many other cases of neurological perturbation and this warrants a proper investigation by the competent authority.


Kind regards,
Jeff Cable

[eers]

Jeff,

Your posts are very encouraging and I applaud your efforts to make our collective experiences heard, whether they be on this board or not. Thank you and Happy Holidays,

eers

[bradford]

From time to time, I have read news articles favorable to statins. Many of the articles will permit you to add a comment at the end of the article. Why not add a warning about the dangers of statins? Here’s my standard post ---

Statins have damaged thousands upon thousands of people. Read their horror stories.

Lipitor horror stories -- *http://www.medications.com/drugs/lipitor & *http://www.askapatient.com/viewrating.asp?drug=20702&name=LIPITOR

Zocor horror stories -- *http://www.askapatient.com/viewrating.asp?drug=19766&name=ZOCOR & *http://www.medications.com/drugs/zocor

Crestor horror stories -- *http://www.askapatient.com/viewrating.asp?drug=21366&name=CRESTOR

Pravachol horror stories -- *http://www.askapatient.com/viewrating.asp?drug=19898&name=PRAVACHOL

Zetia horror stories-- *http://www.askapatient.com/viewrating.asp?drug=21445&name=ZETIA

Mevacor horror stories -- *http://www.askapatient.com/viewrating.asp?drug=19643&name=MEVACOR

P.S. Instead of trying to debate the medical issues of taking statins, I let the people who were damage by them do the talking. It’s very effective.