From the current Atlantic Magazine:

"Though the results of drug studies often make newspaper headlines, you have to wonder whether they prove anything at all. Indeed, given the breadth of the potential problems raised at the meeting, can any medical-research studies be trusted?

That question has been central to Ioannidis’s career. He’s what’s known as a meta-researcher, and he’s become one of the world’s foremost experts on the credibility of medical research. He and his team have shown, again and again, and in many different ways, that much of what biomedical researchers conclude in published studies—conclusions that doctors keep in mind when they prescribe antibiotics or blood-pressure medication, or when they advise us to consume more fiber or less meat, or when they recommend surgery for heart disease or back pain—is misleading, exaggerated, and often flat-out wrong. He charges that as much as 90 percent of the published medical information that doctors rely on is flawed. His work has been widely accepted by the medical community; it has been published in the field’s top journals, where it is heavily cited; and he is a big draw at conferences. Given this exposure, and the fact that his work broadly targets everyone else’s work in medicine, as well as everything that physicians do and all the health advice we get, Ioannidis may be one of the most influential scientists alive. Yet for all his influence, he worries that the field of medical research is so pervasively flawed, and so riddled with conflicts of interest, that it might be chronically resistant to change—or even to publicly admitting that there’s a problem. "

So who or what do we believe?

I was at a conference on the lumbar spine some years ago, and the main speaker, a doctor renowned for his research on the spine, said that we should throw out nearly all the research that had been done to date. Most of it was, in his opinion, useless or wrong.

Evidence Based Practise: That's the main buzzword in medicine of any kind these days, and yet there's very little evidence to support most of what is done. The good research just simply hasn't been done.

For good reasons - 1. it's very expensive to have enough subjects, have enough trained researchers for it to be double blinded, have it properly randomised, etc. 2. it's really difficult to control all the variables - most studies end up saying "this may show that .......... and further study is required. 3. To really prove something, the study has to be repeatable by other researchers. But everyone wants to do original research and all the funding sources also want to be in on the original stuff, so it's hard to get money to be the second one. So there's lots of tantalizing information out there that has never been repeated, so you don't know.

And the money that's wasted on stupid research topics makes me crazy. I would like to shake PD researchers and tell them that their work is incredibly important, they can't waste a single day or dollar, get to the good stuff. I know the basic science is necessary, but come on......!

Oreilly, who is not a far right fanatic as labeled, but actually quite fair except he does interrupt, introduces vocabulary words at the end of his show. Last night's word was tendentious. I will not tell you but tempt you to look it up or learn it from context. I thought of it after reading rick and marcia. It does not describe them, but rather our national attitude. Unfortunately, it's become acceptable and in many cases used to be unacceptable - like in the days when reporting was not known to be "tendentious".

Everyone has an agenda. People love to call each other "fanatics". When the real fanatics emerge, you'll know it . We saw it on 9/11 and blame it on ourselves. I do think we had fault in it but not the act itself. Our greed and 'moral character" made people hate us badly enough to kill us.
I admit to thinking - we have finally met our punishment for being so greedy and immoral.

So when we read about potential "treatments" and encourage people to participate in trials, if we do it blindly or with little disgression, a life can be ruined because the researchers often have an agenda quite different from curing, and companies do not understand patients or illnesses. We call for results and transparency and there is some improvement. I think the orgs are seeing our value but much of it is for clinical trial recruitment.
They could have us in the palm of their hands if they were genuinely compassionate and acknowledged our own work.

To rick's post I say, "thus the pdpipeline project" ten years ago. thus the book - Peripatetic Pursuit of Parkinson's, about the last ten years of patient emergence into the medical communities. And all the other patient efforts and there are many. I can't name them because i will leave some out. Ten years ago, we began what many are now doing. We didn't focus on recruitiing, we focused on collecting and providing information.

Personally, Marcia j, I don't think anyone without a history with you or for you and/or other patients can be trusted not to be "tendentious."

Competition is productive in companies but not in patient relationships. I was reviewing the article about Spain and how they agressively fought the shortage, together. Your priorities need to be visible, not verbally relayed. The patients are hip to the "sell yourself" version that emerged somewhere as i became older. people who are "selling' anything are coming from an agenda that can be "tendentious".

I believe the man in rick's article because of our experience with GDNF. Looking back, it was one of the defining moments of my life that culminated in opening my eyes to the lengths that industry will go to to keep us and data repressed. The trial I went to in kentucky was like a grisham novel....about 9 attorneys for Amgen and 1 for the patients. The judge greeted one of the Amgen attorneys - they were old buddies. The south?

ok it's a ramble now so i'll quit. i wish i could trust people. i trust those whose priorities are visible and genuine. Those who are honest and are givers, not takers. Few and far between. Many in the pd community tho.

if we all worked on being worthy of each others trust, we'd see a difference. you have to look within.

This is truly frightening. Some time ago my husband & I started reading up on cholesterol and statins. When you read about the damage they may do to the liver, and consider just how few people the statins actually help - it sure seems like an endorsement for the researcher in Rick's cited article.

Jean

In order to get reliable information from any source any more, I think the profit motive must be removed. Just think if all researchers, around the world, worked together in honest collaboration for the betterment of the human condition, what wonderful things they might achieve.

I know I'm sounding like a communist but for the sake of relieving human suffering, couldn't we try to encourage altrusim and just see if it isn't superior to the model we are currently using. As long as profit it the overriding motive for finding superior treatments and even a cure we will remain at the mercy of faulty research methods and bogus results.

Speaking of ranting!!!

What was fascinating to me about this article was the woman doctors comment on patients taking many medications, that often when you stopped all medicine the patients started to get better...... I know that for some of us that is completely out of the question, we are addressing shortages of vital chemicals in the brain, but exactly that attitude informed all my decisions on taking allopathic drugs prior to my PD diagnosis. I simply did not take any.

In the time since diagnosis my PD symptoms HAVE improved, but I also have had things happen to me that I am SURE relate to taking drug cocktails, and I have worked on simplifying things as a matte of surviving the treatment. Some of these things are breathlessness, very swollen legs and tendency to oedema, sensation of rapid heartbeat (something others have also reported), mental and cognitive affects, also loads of people have reported these, apathy which I find one of the worst things of all, and varying sensations of numbness.

So how does this relate to this article - well every drug that has been prescribed came with the 'current ideas' on particular aspects of PD, not all worked well, some worked appallingly badly, with dreadful side-effects, and did not address the problem, and I have had drugs prescribed to alleviate the side-effects of other drugs...... not uncommon in PD.

I'm relatively well informed - and I think about the people in care facilities where decisions are made for them, and the studies done based on their responses, and those of the many people isolated with their condition taking cocktails that are supposed to help them........ and I can count onto both hands the people I know who deteriorated badly on treatments led by current medical thinking. The latest of these is a warfarin-induced brain bleed in a young person prescribed this drug AS A LONG TERM TREATMENT with no parallel monitoring of blood viscosity.......

All of this thinking comes through influence from published and well promoted studies that 'prove' things.......... I am with Paula on this: it is not a good thing not to be able to trust easily, but on the other hand our times are not an era in which naivety is useful......

I took issue with the study on cycling as a diagnostic aid, heres why. Fifty percent of people already diagnosed with PD could be identified as 'atypical' OUT OF 4% of the study cohort. That equals 2%. But there is already a school of thought that says that up to a third of PD patients will be found post mortem to not have a damaged SN, and there is as yet NO proper analysis or conclusions on the very sticky subject of subtypes......... If we have a snowflake disease and there is no consensus on what those snowflakes look like, then how is a study like this useful........ Some of us can cut vegetables and some can't. Some can keep a tune and some can't. And exactly how far can these studies be taken into the realms of the fantastic.

And how about the individual who has doctors who do not question, and decide that their 'atypical PD' is not actually PD at all, denies them treatment for PD, and sends them off onto another journey to find a solution to the health problem they have, all as a result of this woolly kind of thinking. As nearly happened to me in 2005 when a study came out on the addictive nature of dopamine, and someone 'decided' that I might be just one of those people on the basis that my medication worked, and I anyhow did not have a tremor. This same person conveniently forgot to look at the fact that I was actually by that time on LESS sinemet than originally prescribed, having been educated by people on this forum on how to manage my medication properly!

People hardly mention the then fashionable and much discussed dopamine addicts. And other much more highly promoted things are also fading from view, one of these is COQ10, which was almost a required treatment at one time. In this case perhaps something has been lost that was valuable...... but how are we to evaluate everything we are bombarded with as patients.....

And the vast machine that exists to promote such studies..... and I am not saying that this particular study on ability to cycle is wrong, just that to be proven it needs more - more people, more time, and more people looking objectively at the conclusions it draws. A published study is not a proven truth, it is a hypothesis, a conjecture, like all scientific thinking, UNTIL proven right or wrong. Or until another theory knocks it of its perch.......... In every field of science that is how thinking works, from astro-physics to genetics.... why is medicine different.......

It is not by accident that these studies make it to the published journals, and on to the media. For that to happen it has to fit into the 'bias' that this article discusses. Press releases are all about promotion of some kind, whether it is personal promotion or corporate promotion. Sadly the bias is often informed by money, damned money......

Lindy

Lindy

I have become so jaded, I am loathe to post studies (obviously, does not stop me, though my postings could number much higher); I believe almost nothing emanating from that hallowed world of "medical science" any longer.
I was interested in the cycling post since the test requires little to no monetary outlay--just 1 bicycle in an office/activity room, to be used during diagnosis. The only thing accruing to the physician who authored this report is further funding money and possibly a name within neuro circles, with invitations to speak at conferences, a bigger budget and more employees.
I am buried in statistical data concerning a specific category of medications, and become more incredulous daily with the massaging of data presented and the lack of reporting of data the industry wishes to keep from public view.

for every action there is a reaction....seems to me natural consequences of a purely empirical oriented soulless based approach to understanding healing has brought us to this place just as is true for our soulless economy.

everything is relative.

IMHO. the community needs to produce it's own treatments - self contained. A big job but impossible if not shared work.