About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

No surprise here: Institutional Corruption and the Pharmaceutical Industry

The systematic corruption of medical knowledge, ranging from clinical trials and new diagnostic categories through practice guidelines to physician prescribing practices, is highlighted in a special fall issue of the Journal of Law, Medicine & Ethics (JLME, 41:3). 

Okay, this was published last fall so you may call me a little slow. But the content, as much as I read (because there was so much more), clearly shows the issues. I recommend you start here and then read as much as you can (stomach).

I read that, I downloaded some articles and read them. I did not read them all. But I got the gist of it.

The systemic corruption, there term not mine, that leads to all sorts of on going problems and unethical practices. Look at this one sentence:

"....how pharmaceutical marketing also distorts medical practice, and how drug firms are even funding social network websites for doctors in order to quietly track their opinions on issues that affect their bottom lines."

And you thought NSA was bad about spying on US citizens.

This next bit was taken from one of the articles by Dr. Marc Rodwin:

We will see that the pharmaceutical industry’s own purposes are often undermined. In addition, pharmaceutical industry funding of election campaigns and lobbying skews the legislative process that sets pharmaceutical policy. Moreover, certain practices have corrupted medical research, the production of medical knowledge, the practice of medicine, drug safety, and the Food and Drug Administration’s oversight of pharmaceutical marketing.

Pharmaceutical firms have found ways to influence — and often corrupt — medical research and publications, and key firms and organizations that affect physicians’ clinical choices. These include: professional medical associations, continuing medical education programs, online professional networking groups, hospital administrators, insurers, organizations that create practice guidelines and diagnostic treatment categories, and patient advocacy organizations. These institutions in turn influence physicians in general and particularly influential physicians known as key opinion leaders.

So you wonder about the over priced medications that are promised to be miracles and then are pulled from the market because of previously unknown side effects. Perhaps the causes might lie in the truths uncovered here.

About all that research

We hear about new research again and again and again. We hear it is progress. We hear people hail it as the latest and greatest. But what does it all really mean? Sometimes I get frustrated by all the so called progress that never seems to help me... And then how often do the researchers stop and ask the people with the ailment what they think of the progress? I am not sure. The pharma companies always say its progress because it helps fatten their bottom line and they can feel good about helping more people. But what about us? I do know that the DOD has a program where their cancer research programs include consumers - meaning those who have had the ailment - as part of their proposal review program. But do others? I never know. I wish it was part of the information provided when results are revealed - that others who had the ailment can see the potential benefit by the progress as opposed to someone looking at a bottom line. I think I have been disappointed too many times by clinical trials for which I am not eligible and then research that doesn't help me. I do mean I get advice on what to eat, drink, do (or to avoid) but I am still waiting for that magic pill that improves my quality of life. I would like more research to ask those who benefit from it what they really want.

Things with a cure

The CDC recently warned of these new germs that are resistant to treatment - the superbugs as they are called. They are out there and killing more and more of us as they resist most treatments. While the pictures of them are pretty cool, the germs themselves are not.

There are other ailments with out a cure. I have a few:

Fibromyalgia
Rheumatoid
Degenerating disks

There are lots of others that I don't have for which I am grateful.

They have treatments to ease the symptoms but not cures. Medical research is needed for these nasty germs and the incurable ailments.

Perhaps I am feeling a little down this morning because when I got out of bed everything hurt. So I am going with plan B - stay in bed until the pain meds kick in. The cat is hanging out with me and the TV is on in the background so I am as comfy as I can get.

But if you don't have these you don't understand. Today I feel like crap. I have plans and will do my best to get through them. But the problem is I know that every day can be like this for the rest of my life. Its pretty damn depressing.

I may sneer at medical studies (because we always need more research) but we really do need the research. There are lots of ailments that do not have cures. And we have these new treatment resistant germs that pop up and kill people. Never mind the bird flus and all the other new ailments.

I think I need a vacation. Oh that's right I am on vacation.... Off to have fun and not be depressing....

Don't believe everything you read or hear

The majority of that 'research' online and in the news is wrong. Or biased or incomplete. In other words, not credible.

This is what happens. Journals which are peer reviewed, meaning a medical journal where all articles are reviewed and approved by a board of doctors before being published, are full of credible information. That is good information.

But then there are many other magazines and journals where researchers send their results to get published. If you get published as a researcher it adds to your credibility and CV so you can build pages of publications so it gets to be nice a long which is a positive think the research world.

Journals are always trying to find ways to fill pages. Some journals are ad free which are published by associations who pay for their publication through member dues and other funding. Magazines which have ads are stuck between a rock and a hard place. They want the ads to pay for their publication but are required by law to have a maximum percentage of pages of ads vs. pages of articles. So the more articles they have the more ads they can have and therefore increase their revenue.

They will publish anything that looks credible.

Then articles get picked up by the media and blown out of proportion and we all get scared and hyped up to avoid BPA or food additives or Vitamin C or red wine (next week white wine).

I am sure I have blogged about this in the past. The advantage of chemo brain, fibro fog, tamoxifen fog, and whatever else I have is that I can't remember squat. But this time I have an article which explains how the whole BPA thing was based on poor data and sampling but hen got picked up by  the media and all the manufacturers got right by getting us to buy new water bottles without BPA.

So don't believe what you read no matter how much it is splashed all over the media. Wait for additional verification. And use your common sense.

Breathing causes cancer

I knew it would come to this. Everything has been researched to the nth degree, millions of researchers have been employed, everything has been dissected, ressected and digested. We have been told that no salt, no wine, no chocolate, lots of vegetables, lots of fruit, get exercise, no we were wrong red wine only, dark chocolate only - and only in moderation (whatever that means), not those fruits but blueberries and other things you have never heard of. We have tried to decipher diets, pyramids, and scams.

But now they tell us. Breathing causes cancer. Actually its not the actually breathing that causes caner but what we breath - air pollution - which causes cancer.

So while this is the active theory, we all need to move out to the wilderness and set up individual homes with solar power (because coal and wood smoke cause air pollution), grow our own fruits and vegetables (but only the right kinds). And grow them organically.

In the meantime, practice holding your breath so you breathe as little as possible to reduce your risk of getting cancer from air pollution. Once you turn blue, more research will be done to figure out how you can avoid inhaling more air pollution.