NO_ONE IS LISTENING

[bibbz]

Hi everyone, I am a 55yo lady from Liverpool uk and a very recent member of your wonderfull forum. I have spent many hours browsing your postings and felt at one with all of you. Like you I too am living or should i say exsisting with the awfull effects from taking simvastatin for many years, but, here in the uk....either my sister and I are the only 2 suffering statin side effects or the rest are like me not knowing where to turn.....untill now!! and thanks to DOC I have been able to e-mail a journalist at the London Daily Mail who is writing an article on statins, and, asked her from whose point of view this article is based. I have given her a brief rundown of the side effects I personally suffer and suggested that all sides be heard because the most important person at the end of any medication is the patient.
I also discovered another web site for the UK called THE NATIONAL INSTITUTE FOR HEALTH AND CLINICAL EXCELLENCE

NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.

They have recommended Statin use for people in high risk CVD to the health professionals.....so I filled in an online form to suggest a topic for them to investigate Re STATIN SIDE EFFECTS. I dont believe that my one suggestion is going to be of any use so may I ask anyone if they have any contact with friends or family in the uk who suffer also, please ask them to visit this site and fill in an on-line form because NO_ONE HERE IN THE UK IS LISTENING. Every uk website i can find are all promoting the use of statins. Unfortunately the uk is about 5 years behind the rest of the world.
I would also lke to thank Fran for her help and support, cheers Fran.
Sorry this is a bit long winded hope you haven`t fallen asleep

Thanks

Lavinia

[sos_group_owner]

Thank you for the kind words Lavinia. Excellent that you contacted London Daily Mail and NICE. Bringing awareness and spreading the word!

Fran

[bibbz]

Hi Fran

I have also written an e-mail to your friend in the uk, I just hope I haven`t bitten off more than I can chew. Everybody on the forum seems so clued up and I hardly know the HDL fom LDL tri`s etc, and any knowledge I have has been kindly provided by you. I am trying to read and absorb as much info as I can but it isnt registering at the moment, its only now I am realising how bad my short term memory is.
So please all you lovely people out there be patient with me if sometimes I come across as someone who doesnt know what they are rambling on a bout, you would probably be right, but the symtoms I have are something I know a lot about. its very comforting to know that you are all here to listen and share your experiences, and that in the not too distant future I can get off these statins and start living my life again with your help and guidance

Fran your a DIAMOND

Lavinia

[Ray Holder]

Hi Lavinia, from Bournemouth

I hope you get more response than I have had over the last 3 1/2 years, I have written to the PM, two Health Secretaries, NICE, MHRA, three MEPs, the dep't deciding to sell statins over the counter, and various consultants. I have had 7 Rapid Responses, or letters to the editor of the BMJ on-line version, published, with no response.

I am working on a different tack at the moment, looking at the financial overtones of statin supply on the NHS, £600,000,000 a year, should there not be more independent audit of the veracity of the studies, trials, etc on which NICE made their recommendations, and even on the independence of NICE itself.

I think I have exhausted the possibilities of influencing the medical hierachy, and feel I have to go to a higher authority, the politicians are unlikely to help, both the PM and the Health Secretary have tried to make political capital from "The thousands of lives saved by their actions on heart health."

I am trying to make good use of the years given back to me after nearly succumbing to cholesterol lowering, the USA website into which I put my figures gave me a 20% chance of having a heart attack in the next 10 years. At 85, I would have put the figure nearer 100%!!!, but will keep pressing on.

Good luck with your efforts

Ray

[adec]

I'm ashamed. Liverpool has given us the Beatles, and we reciprocate by delivering deadly cholesterol lowering medications. I have gained so much benefit from the Beatles; their music has greatly enriched my life; but statin drugs have made life a living hell for my loved ones.

And yes, there indeed are people listening. The problem was: you were simply talking to the wrong people. We have a nice on-line community developing here. Although, there needs to be more of us spreading the word... if we truly want the world to listen. We cannot allow the continued sale of these harmful drugs, in their current form. Especially when I read about teens, and young adults, being prescribed and popping these pills as if they're candy, it consumes me with such indignance.

We need to wipe those dollar signs away from our doctors and major pharma's eyes, and show them the great harm they're causing. There are so many living examples, walking the streets like zombies. In the very least, we need them to wake up from their long slumber and realize that statins, in their current prescribed dosages, in the absence of CoQ10, are slowly killing people. And yet, unbelievably, there are still doctors in this world -- with years of medical school under their belts -- prescribing these statins in daily 40 mg mega-doses! That's more than 10 times greater than even the most reasonable dosage! I'm not sure if it's mere ignorance, or plain negligence and a simple case of malpractice. But we need to get to the bottom of this situation, and soon!

[CatMom]

The makers of this stuff have put a ton a $$$$ into convincing the world these drugs the greatest thing ever made. I find in just talking to people about my experience, some of them get downright hostile as if I were attacking them personally. People who have not experienced the realization of what it is doing to THEIR own bodies think we are crazy.

I just don't believe that we are but a few odd ones that had a reaction to something that was suppose to help us.