We are going to get one million signatures on this petition, and present it to all governments, and change the relationship patients and their doctors have with medical research. Permanently.

First, watch Dr. Ben Goldacre here:
http://www.ted.com/talks/ben_goldacr....html?c=540521

Then read the petition and sign it here:
http://www.alltrials.net/

Then tell everyone you know.

There will be counter-attacks, so for those of you who want to go beyond signing the petition, this thread will provide more information and comment (from any member and any point-of-view, approval or disapproval, as always at Neurotalk), so that you have information if you need it, or simply want to be conversant with the controversy, which is going to shake the medical world. (The Inuit say, “It is not in hearing of a thing just one time, that you can know it. You must hear of it many times to see it.”)

This debate is HOT right now, especially in the U.K., and take note that Parkinson’s U.K. is right in the thick of it, as American PwP organizations should also be.

Pegleg launched the following discussion: (and she signed the petition) http://neurotalk.psychcentral.com/thread186565.html

Conductor 71 launched this discussion: (an on-going example of the broken relationship between patients and the medical industry): http://neurotalk.psychcentral.com/thread185520.html

The 4 links above are the central information; you don’t need more than that. But more is available, such as:

Dr. Ben Goldacre said this:
Medicine is broken. And I genuinely believe that if patients and the public ever fully understand what has been done to them – what doctors, academics and regulators have permitted – they will be angry. On this, only you can judge.

We like to imagine that medicine is based on evidence, and the results of fair tests. In reality, those tests are often profoundly flawed. We like to imagine that doctors are familiar with the research literature, when in reality much of it is hidden from them by drug companies. We like to imagine that doctors are well-educated, when in reality much of their education is funded by industry. We like to imagine that regulators only let effective drugs onto the market, when in reality they approve hopeless drugs, with data on side effects casually withheld from doctors and patients.

…the whole edifice of medicine is broken, because the evidence we use to make decisions is hopelessly and systematically distorted; and this is no small thing. Because in medicine, we doctors and patients use abstract data to make decisions in the very real world of flesh and blood. If those decisions are misguided, they can result in death, and suffering, and pain.

This isn’t a simple story of cartoonish evil, and there will be no conspiracy theories. Drug companies are not withholding the secret to curing cancer, nor are they killing us all with vaccines. Those kinds of stories have, at best, a poetic truth: we all know, intuitively, from the fragments we’ve picked up, that something is wrong in medicine. But most of us, doctors included, don’t know exactly what.

…The people you should have been able to trust to fix these problems have failed you…

Drugs are tested by the people who manufacture them, in poorly designed trials, on hopelessly small numbers of weird, unrepresentative patients, and analysed using techniques which are flawed by design, in such a way that they exaggerate the benefits of treatments. Unsurprisingly, these trials tend to produce results that favour the manufacturer. When trials throw up results that companies don’t like, they can hide them from doctors and patients, so we only ever see a distorted picture of any drug’s true effects. Regulators see most of the trial data, but only from early on in its life, and even then they don’t give this data to doctors or patients, or even to other parts of government. This distorted evidence is then communicated and applied in a distorted fashion. In their forty years of practice after leaving medical school, doctors hear about what works through ad hoc oral traditions, from sales reps, colleagues or journals. But those colleagues can be in the pay of drug companies – often undisclosed – and the journals are too. And so are the patient groups. And finally, academic papers, which everyone thinks of as objective, are often covertly planned and written by people who work directly for the companies, without disclosure. Sometimes whole academic journals are even owned outright by one drug company.

Aside from all this, for several of the most important and enduring problems in medicine, we have no idea what the best treatment is, because it’s not in anyone’s financial interest to conduct any trials at all. These are ongoing problems, and although people have claimed to fix many of them, for the most part, they have failed; so all these problems persist, but worse than ever, because now people can pretend that everything is fine after all.

….it’s possible for good people, in perversely designed systems, to casually perpetrate acts of great harm on strangers, sometimes without ever realising it. The current regulations – for companies, doctors and researchers – create perverse incentives; and we’ll have better luck fixing those broken systems than we will ever have trying to rid the world of avarice.

…Today, when an academic or doctor tells you that they are working for the pharmaceutical industry, they often do so with a look of quiet embarrassment. I want to work towards a world where doctors and academics can feel actively optimistic about collaborating with industry, to make better treatments and better patients. This will require big changes, and some of them have been a very long time coming.

…The true scale of this murderous disaster only fully reveals itself when the details are untangled. Good science has been perverted on an industrial scale, but this has happened slowly, and evolved naturally, over time. This has all been perpetrated by ordinary people, but many of them may not even know what they’ve done.

I want you to find them, and tell them.

Dr. Ben Goldacre: from the Intro to his book “Bad Pharma: How drug companies mislead doctors and harm patients”. (posted with permission)

This is scarry Bob. I do think the system is broken but I didn't know it was this bad. Can a non PD person sign the petition? ginnie

Oh, everybody can sign, Ginnie; and the research problem exists for all diseases and all people. I am pushing the People with Parkinson's because Parkinson's U.K. is active in it and I am not sure where the American Parkinson's groups stand, although I am encouraged that Peggy Willocks signed because she was among the first group of P.w.P. to start patient advocacy, during the AMGEN scandal.
Everybody can sign this petition.

I signed Bob, I have multipal auto immune problems. I was in a trial study for about 9 years or more. I would hate to think all that suffering through it was for nothing. I took a form of topical chemo, which beat my immune system to do the right thing, and stop attacking me as a foreign object. It was a very hard thing to go through. I did it because I was worried about my children. If this same problem came up in there lives, I wanted them to have some hope. Thanks for bringing this to my attention.
I hope you are OK. Listen to Puscifer "The Humbling River" nice and loud. The words are very very true. Take care and keep in touch with me. ginnie

for posting this. I wish I could sign more than once. madelyn

also signed

For Bob,

With my apologies to the late Gil Scot Heron:

You will not be able to sleep, brother.
You will not be able to plug in, turn on and stay on.
You will not be able to lower your skag and skip,
Skip or walk out of the room during commercials,
Because the revolution will not be televised.

The revolution will not be televised.
The revolution will not be brought to you by Abbvie
In three trials without further FDA interruptions.
There will be no pictures of Amgen cutting off
our brothers in the instant replay.
There will be no pictures of Amgen cutting off
our brothers in the instant replay.
The revolution will not be televised.

The revolution will not be brought to you by The Unity Walk.
The revolution will not be the best part about waking up.
The revolution will not make your teeth five times whiter.
The revolution will not go better with Coke.
because the revolution will not be televised, Brother.

The agonists will no longer antagonize and that
little yellow pill will no longer be so da**** relevant
because we will be crawling, out of the rabbit hole
looking for a brighter day.
The revolution will not be televised.

The revolution will not be televised, will not be televised,
will not be televised, will not be televised.
The revolution will be no re-run brothers;
The revolution will be live.

Thank you, Bob... I signed!

But I figure W-SPAZ News at Six could do a pay-per-view series about the revolution, on cable, and accept money from companies that don't want their name mentioned, as a reverse-sponsorship. "For $100,000, we will NOT put your logo on our Parkinson's t-shirts..." We gotta' think big here.

MEDICAL RESEARCH COUNCIL CENTENARY 1913-2013
Make all research results public
by Sir Iain Chalmers on April 4, 2013

… clinical trials… are impossible unless patients agree to participate in them… All participants in clinical trials believe that their involvement will help to increase knowledge about the effects of treatments. They expect that people with health problems like theirs – and perhaps they themselves – will be able to make better informed treatment decisions in future as a result of their contributions to knowledge.

How come, then, that the research community, including research funders and regulators, have acquiesced for decades in the non-publication of around 50 per cent of all clinical trials? Can this be characterised as anything other than a gross betrayal of the trust in researchers which motivated volunteers to participate in clinical trials in the first place? How many of them would have agreed to participate if researchers had told them “If the results of this trial don’t serve our academic or commercial interests we won’t make them public”?

After doing research on biased under-reporting of research 20 years ago, I raised these issues in an article published in the Journal of the American Medical Association entitled ‘Underreporting research is scientific misconduct’. The evidence that has accumulated over the subsequent two decades has made clear that the problem is widespread. It’s not only unethical and scientific misconduct; it is also simply a waste of precious research resources. As illustrated by numerous examples, under-reporting of research has led to harm to patients from exaggerated estimates of treatment benefits and safety, and built-in inefficiency in efforts to discover useful and safer treatments…

So what has happened to change the terms of the debate after a quarter of a century during which researchers, research funders, research regulators and politicians have failed to address the problem seriously? Two things. First, Dr Ben Goldacre published Bad Pharma — a book making clear to the public, using a mountain of evidence, why they should be concerned about the situation. In brief, his message is: ‘How can you or your doctor make an informed choice about which treatment to choose if half the relevant evidence has not been made public?’

Second, Sense about Science, an organisation campaigning to promote science to the public, has decided that non-publication of clinical trials is a stain on the public image of science, and that, after years of wavering and disingenuous excuses for inaction, it must be confronted and dealt with… Sense about Science’s new campaign — All trials registered, all trials reported — aims to achieve just what its title calls for…

This article was originally published in the Spring 2013 issue of Network.

http://www.insight.mrc.ac.uk/2013/04...lic/#more-1955