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Old 01-August-2007, 05:24 PM
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Question Seeking advice on a Scientific approach.

I was severely damaged by a faulty medication when I was a youngster .

I also disagree with the way medications, especially psychiatric medications are used to treat mental illness.

I "know" there is a huge problem that needs dealing with, but of course I live in the real world where we have to prove, using the right methods, that there is a problem.

I know this is not a Health forum, but I respect many of the members here and the critical thinking methods used.

Basically I think I need to do a statistical research study in the Health profession records. I suspect that this kind of study would show that many of these medications simply don't work.

So I am seeking advice here. How should I proceed ? Enlist the help of a trained statistician / researcher ? Take a course my self ? Write to researchers in the Health profession and get them to do it ?

I want to take the right approach. Just to be absolutely clear here, I believe that mistakes have simply been made. I DO NOT support the "they are malevolent" angle.

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Old 01-August-2007, 07:06 PM
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I'm not sure I have a lot of advice. One question I had, what records are you going to do statistics on? And what are "Health profession records"? Are you studying health care professionals or are you studying the effects of the medications? I somewhat doubt that such records are available.
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Old 01-August-2007, 08:08 PM
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Convince a law firm that there's big money in a lawsuit against a drug company. They'll do the necessary research.
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Old 02-August-2007, 10:24 AM
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I can say at least that if you really look at psychiatric drugs, you will likely find yourself facing some very difficult questions that make it hard to be objective.

One is the fact that unlike with some diseases, it is in many cases impossible to measure psychiatric illness with objective measures. In many cases it is a clinical judgment.

The other problem is that the placebo effect is very strong in illnesses like depression and anxiety. I've heard that when they tested SSRIs, it was very difficult to show any superiority over placebo, because in fact, the cases improved in something like 30% of people given placebo.

So just to warn you; don't expect to find easy answers one way or the other.
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Old 02-August-2007, 11:50 AM
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Thanks Jens,

Yes, I'd come to that conclusion myself. This subject is a minefield of misunderstandings, politics, fear of mental illness, you name it, it's probably there.

But this is why I've come back to Science that is equipped to put these human frailties aside and come to some kind of Scientific conclusion.

I don't expect to get anywhere soon. It may take years.

But, yes, that Placebo effect you mention. Where are the records of those trials ? I was rooting around in the NHS statistics system here in the UK, but I couldn't find the right data. I need to mail someone.

I suppose I'm looking for the right path to take. How would someone who is unqualified put together this kind of study so that it will have some kind of credibility and be seriously considered ?

Do I just put together a paper and send it to Nature ? I wonder if it would even touch the desk !?

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Old 02-August-2007, 02:00 PM
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Unless you get a job working at an established research entity yourself (which takes more than a class in statistics; you'd need at least a whole bachelor's degree in a related subject and mostly likely something even higher), and are free to pick your own research subjects to do on the job, you will need a professional statistician or medical researcher to do this for you, or at least to assign it to one of his/her students or assistants. On your own, even if you somehow had the knowledge of how to do this kind of stuff, you'd have no credibility and wouldn't get taken seriously, and probably wouldn't even be allowed access to the data to get started.

So the question then is how to get an established medical researcher or statistician interested in it. And I don't know how; folks in the scientific professions are used to avoiding dealing with ideas from the general public on their subjects because most of what they get in their own fields from the outside is utter quackery. They get letters in the mail all the time which usually make no sense and get junked without any real consideration, so you shouldn't mail anything in. Email would probably be subject to the same treatment even if you did find an address, which probably wouldn't be published so you wouldn't find them anyway... although the possible exception there is the generic email address on many organizations' "ask us" or "contact us" web pages. That leaves phone calls and actual personal visits at research hospitals or university math/medicine department offices. The high-level professionals like you need to talk to usually manage to avoid and insulate themselves from those because they have no interest in taking on work topic suggestions from the public or being interrupted in whatever they're already up to at work. (If they do take suggestsions/requests, their receptionists will know about it and be able to tell you what to do to submit one.)

However, if you do manage to get anyone's attention long enough to present your idea, don't pitch it as something you "know" and just need to conjure up support for; pitch it as a question to find the answer to... and be ready to be told a different answer from what you presume.

Last edited by Delvo; 02-August-2007 at 03:38 PM.
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Old 02-August-2007, 03:32 PM
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By the way ... this is me joking just in case you get the wrong idea:

So I can either spend years doing it the amateur way and be ignored and die a bitter old man. Or I can do it the professional way but will still have great difficulty prising people away from their projects and by the time I do I'll be almost dead and die as a bitter old man .

No, seriously. That's great Delvo. So I could put together what I can and present that to someone in the right way (ie. NOT suggesting I know what I'm talking about at all), and then expect to learn a few things that I hadn't expected at all. Huh, isn't it always the way ? Yes. This is very interesting. I just have to take the time to scope the right approaches and not get cocky.. and well, we'll see

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Old 03-August-2007, 02:10 AM
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The problem will only get worse as they probe into the individual genetic responses. Most of the drugs out there now (no matter the specific field) work on the vast majority of people. The drugs being explored now are those that are specific to the odd genetic mutations that make the older drugs useless or to conditiions that adapt to the older drugs.

Many of these drugs do not work any better than existing drugs--unless you are the minority who carry a genotype that neutralizes the common drug.
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Old 03-August-2007, 09:54 AM
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Are you saying the problem of adverse drug reactions will get worse ? Or the effort required to investigate newer drugs will ? I'm not sure I understand what you're saying there.

Well, OK. I'm not a trained Scientist as has been pointed out. But from my perspective the sentence "Most of the drugs out there now (no matter the specific field) work on the vast majority of people" seems misguided to me.

My understanding of how drugs like Prozac work comes from a Dr Tracy, a fully qualified physician who has revealed problems with these drugs in her book "Prozac: Panacea or Pandora". She is, thankfully, free of the "C word" cloak and dagger angles of some of the voices in the Health industry. The closest you get to that is the currently running El Lilly court case where they are accused of knowing of serious Prozac side-effects but not informing the FDA.

The SSRI's "Selective Serotonin Reuptake Inhibitor" drugs ... do exactly that, stop the re uptake of Serotonin. The "Chemical Imbalance Theory".

Now, as I said I'm no Scientist, but Dr Tracys book is no work of New Age fuzziness either. It is based on the Scientific literature. Of course it's her research and is open to interpretation, but it's the only model that makes sense to me and has helped me recover from the use of these drugs.

I would like to see a back to basics approach.

Look at LSD. The original and first, Pharmaceutically synthesised drug. It raises Serotonin levels, just like any drug. Cocaine does this, Amphetamines, Cannabis.

As I said at the beginning of this message I cannot agree with the sentence that these drugs "help most people". I regard it as an illusion. Although I am often frustrated trying to explain it to trained people as I do not have all the Scientific studies to hand and am still held back by effects that I still suffer from the usage of those drugs (a sort of huge Catch 22). But should I stay silent ? I think not.

Nevertheless, I know it is well known that LSD increases Serotonin, as do other drugs. Surely that should ring a few alarm bells ? Why are we giving "anti depressants" to already fragile people. A drug that RAISES serotonin. Surely we should be LOWERING Serotonin ?

For example take this Wikipedia page (which has no citation but this is the common antidepressant theory)...

"Some theories link depression to a lack of stimulation of the recipient neuron at a synapse[citation needed]. To stimulate the recipient cell, SSRIs inhibit the reuptake of serotonin. As a result, the serotonin stays in the synaptic gap longer than it normally would, and may be recognized again (and again) by the receptors of the recipient cell, stimulating it."

Now maybe that's true in depression (maybe!). But I know that these very same drugs are given to people with Mania and all sorts of conditions. A state where they are clearly OVER stimulated. Where's the Science here ?

Again, I am not a trained Scientist, but I am a human being who has to endure the effects of these drugs. I have also seen the effects of these drugs on other people. I think anyone who denies that there is a problem with these drugs is not fully informed.

I also do not agree with the way Psychiatric patients are treated. We have hundreds of years of Freudian and Jungian Psychology under our belts, and yet there seems to be this trend to resort to chemical "quick fixes". Is anaesthetising someone with a mental health problem really solving the problem ? Or is it taking away their right to fully recover ? Maybe because that is easier for everyone else ?

Again, I am nor fully informed on this subject, but who ever is ? But I cannot deny what I see. I don't necessarily propose the banning of ALL drugs (not that I like any of them). Some drugs DO save people's life's. In an emergency room situation for example. But they are not long term solutions in my opinion.

Fine, I won't be able to produce a credible report on this subject on my own. I might even have difficulty bending someone's ear, but isn't ignoring this problem, especially when there is evidence of undue suffering, just bad Science ?

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Old 03-August-2007, 05:16 PM
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Okay, I always enjoy the challenege of coming up with ways to run valid tests. That's my favorite part of anything in the scientific realm. But first you need to determine exactly what you will be testing. "Effectiveness of Psyciatrich Drugs" is too broad. Narrow it down to at least different classes of drugs, if not each individual one utilized. Also don't forget the control--you cannot just look at people who are on medication, but also people who are part of alternative treatments, and most importantly people who are on no treatment whatsoever.

Now there's two major roadblocks you'll have to overcome; one--you have to define effectiveness. You can't just say "does it make them normal" (there's no such thing as normal anyway).

Secondly, you have to figure out how to find the information. Medical records, particularly in the last 10 years, are pretty much off limits. Unless you can get a large enough sampling of volunteers, you might not get the information you need. You can't use drug-company reports or doctor interviews because both are biased. Ideally, you will do all that research yourself--but if you lake the medical background, and access to patients, it might be logistically impossible for you to do on your own.

One option might be to check with various medical groups at a local Uni.

Only adivse is remember: A) you MUST have a control group. and B) something of this nature is highly individualized. You'd have to study a person's entire history, i.e. the before and after.

Side note: one simple report you could do to look at one aspect is investigate the ammount of money psyciatrich drugs as a solution to mental illness compaired to how much other meathods cost. Or the ammount of people who recieve one treatment, the other, (AND NO TREATMENT AT ALL! did I mention a control group is important?) and how many of them still end up institutionalized, in dependant living, or are able to funtion independantly.

Oh, last advice is to focus on one particular mental illness, not them as a whole.
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Old 03-August-2007, 05:38 PM
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Thanks Fazor

I suppose I'm trying to rise above this highly emotive subject and formulate an approach. It seems like a huge job, but a large journey is started with a single step.

So you're stating the highly focusses approach ? Specific ? One drug type, one condition type, control group. Ideally a clear study that won't fall into any pitfalls.

I think the "subjective" elements are maybe more concrete than we imagine. Normal ? True there is no such thing, but I think there are very clearly defined modes of human behaviour. People tend to do things and have interests. If someone is isolated in their room all day for years then that would probably stand up for evidence for some one not having found their potential. I don't think potential should be forgotten, which is why I'm doing this. I don't think that because someone isn't screaming and shouting means they are "cured". I think we can do better.

Anyone willing to stump up the money for the study ? (Joking).

But I guess the right sum of money would employ qualified scientists to carry out this study. Hmmmm.

Got some thinking to do

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Old 03-August-2007, 05:49 PM
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Well I guess the best statistics for what you're looking for would be are they A) Totally Dependant, B) Partially Dependant (assisted living) or C) Independent

Are they Employed?

Do they have a family?

Those are things that society defines as "normal". I don't mean you should only study one mental illness, but don't compare shizophrenia to ocd. you can study both, but they're two seperate things.

Best bet might be to contact some support groups for different types of illnesses, and visit some facilites. Again, you'll most likely have to overcome the whole privacy act obsticle at every turn--particularly if you don't have a university or a medical group backing your research.

Hope that helps
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Old 03-August-2007, 06:29 PM
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Yes it does. Thanks for this

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Old 03-August-2007, 09:45 PM
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DJ,
I'm not clear about what you want to research.
Effectiveness of drugs? The Randomised Double Blind Controlled Study is the gold standard. Look for that (experimental group, control or placebo group, subject and experimenter blinded as to the random allocation to each group)in any drug trial, though there are many other refinements that are necessary to achieve an unbiased result. And nowadays, a true placebo group that has no effective treatment is difficult to justify on ethics grounds. Read about the design of drug trials at: http://www.sahs.utmb.edu/Pellinore/i...h/clintrls.htm

If you are interested in mistakes in therapy - drug, surgical, radiation etc. - this is a field in which much work is being done. If you go to PubMed and search for "drug errors" you will get over 13000 hits! See:http://www.ncbi.nlm.nih.gov/sites/entrez

Medicine today places great emphasis on "Evidence based" healthcare, treatment that has been shown to be effective by the best standard of experimental trial. See: http://www.cochrane.org/docs/ebm.htm

Finally, no drug is without side effects, common, rare or unique. The chance that that you will suffer from one of them will depnd on mnay factors, including your genetic makeup, about which we still know little, enviromental factors and chance itself

Good luck and I hope that you can find a solution to your problems,
John
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Old 05-August-2007, 12:16 PM
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Thanks JohnD,

Those are exactly the links I'm looking for. I shall spend some time looking at these

"I'm not clear about what you want to research."

Well, I'll start at the beginning again.

Just like ADHD kids today, I was medicated at age 6 with a particularly strong
medication "Imipramine". I have heard that this used to be given to Vietnam vets, so you can imagine how strong it is.

Now I don't want to drag my personal problems onto a public site, but it has been many years since this happened and I am grown up now. I have decided that I should not stay silent about this.

After I was given this drug I had a huge reaction to it. Hallucinations, sleep walking, and most serious of all I started self harming. I was NOT self harming before I was given this drug. I am NOT self harming now, although that terrible malady was my bug bear for many years.

I can see how you could think I have some kind of gripe or even vengeful ideas about "getting back at the system" after this little episode.

Even that it's my own problem that I should not bring onto a public site.

But what if I'd been hit by an asteroid when I was six, and became a Planetary Scientist interested in studying asteroids and stopping the same thing happening to some other kid ? Would I be misguided ? Would I be a "driven man" ? I think not. Many a life has been moulded by such events. Instead of shrinking away from them we should face them and move on.

Mine is not an isolated incident. I have heard many stories, and there have been court cases where Dr Tracy has been called to stand as an expert witness. She has proved again and again that these most terrible acts were caused by the medication. Is that a "side effect" ?

Yes, "side effects".

Again, the space analogy. If our space probes suffered from the same number of "side effects" as these medications then the whole space race would be pulled back grinding to a standstill so that investigations could be made. Just like the O ring going on the Shuttle, just like any accident.

If people die in an air plane crash then, rightly so, the fleet is grounded until the cause is found.

But in certain areas of medicine I see a terrible neglect of these approaches. It's as if we're prepared to play with people's life's in a way that would never be accepted in any other field.

Should there not have been and shouldn't there be, a public enquiry about Prozac, about all these medications ? It is every few months that there is a new revelation. Like the diabetes drug doubling the risk heart failure ... these are not "side effects", these "effects" can cause death, they are fatal. That is no "effect" !

In my opinion there is so much reason, so much common sense, so much good Science that gets thrown out the window in this field. Take the following.

This Wikipedia article cites a reference for the "clinical proven" treatment of ADHD. A "cost effectiveness" study is cited with no references that I can find, at all, to any effectiveness study. This is not an isolated incident. I see this pattern repeated over and over.

The Wiki page does, at least, say that other treatments are available "It is increasingly recognized that omega-3 fatty acids, zinc, and magnesium have benefits with regards to ADHD symptoms."

But go to the Wiki page about actual ADHD treatments, and frankly I feel like I've entered the Twilight Zone, or the X Files. The page clearly states that all those drugs are based on Amphetamines. These are substances that are banned and illegal worldwide. They are clearly known to cause severe behavioural problems. So why on earth are they being given to children who have already been diagnosed with a behavioural problem ?

That is what I want to research. Does that answer your question?

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Old 05-August-2007, 10:25 PM
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DJ,
I'm sorry for your troubles.
And glad that you have surmounted many of them.
But people who take therapeutic drugs are subject to side effects, because drugs are not precision instruments, more like specially shaped hammers. They do the job, but only if weilded correctly.

Side effects may be better named "Adverse effects".

Imipramine is a good example. It is one of the tricyclic antidepressant drugs, of proven (Class 1 evidence) use in clinical depression, but it has many different types of adverse effect listed. And a special warning on its use in children.
See: http://www.fda.gov/medwatch/SAFETY/2...anil-PM_PI.pdf
You can look up any drug there - I assume you are US based.

So modern medicine does not '"neglect" such things, but seeks them out, to better understand the many ways that a drug can work. Sometimes rare or difficult to observe adverse effects remain unknown until the drug is released for general use. I don't know about US practice, but the UK has a special reporting system, that monitors all drugs, to try and pick these up.

A good example of this, though from a long time ago, is thalidomide. The unborn children of mothers given this drug to combat morning sickness of pregnancy suffered and suffer dreadful handicaps. As well as acting against sickness, it is a sedative, an anti-inflammatory and is presently being investigated for use against cancers. Which is the therapeutic effect and which the side effect? I except the phocomelia - that has to be adverse.

And amphetamines. They have not been banned worldwide, they are still part of the range of drugs available for use in certain conditions, for instance nacolepsy. And ADHD. Though they are and should be prescribed only by specialists. Although the field of AHDH is one I am not qualified in, it is clearly one in which the whole diagnosis, let alone treatment is contraversial.
For information on ADHD, I would trust a site like your National Institute for Mental Health: http://www.nimh.nih.gov/ rather than the Wikipedia.

I'm glad the previous links I posted are helpful, and I hope these do the same.

John
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Old 07-August-2007, 11:14 PM
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Quote:
Originally Posted by JohnD View Post
DJ,
I'm sorry for your troubles.
And glad that you have surmounted many of them.
Thanks JohnD,

Yes, I have recovered, but it has been a hard road. It has been a very close run thing a few times. I cannot over emphasise the hell that this drug put me through.

Quote:
But people who take therapeutic drugs are subject to side effects, because drugs are not precision instruments, more like specially shaped hammers. They do the job, but only if weilded correctly.
Very true. Are you saying it's "not an exact science" ? I'd certainly agree with that.

Quote:
Side effects may be better named "Adverse effects".
Yes.

Quote:
Imipramine is a good example. It is one of the tricyclic antidepressant drugs, of proven (Class 1 evidence) use in clinical depression, but it has many different types of adverse effect listed. And a special warning on its use in children.
See: http://www.fda.gov/medwatch/SAFETY/2...anil-PM_PI.pdf
You can look up any drug there - I assume you are US based.
Yes, I've seen a few warning leaflets like this before. This one seems to be particularly detailed. So thanks for that ! I have a paper by a Chinese researcher somewhere where he says "Be careful of giving a potentially lethal medicine, for a non lethal problem".

My "problem" was wetting the bed, as many 6 year old boys do. I'm still trying to piece together the logic (if any) of giving a very strong antidepressant to such a young person for a condition that is very normal and completely non-life threatening.

As I say, I want to start going back to basics and see if real Science has actually been followed in this area. Someone said "Science is a way to make sure we're not fooling our selves", so, well, as I've said I believe that some posts on the way to that grand "Science" has been missed on the road. Sentences like this raise my suspicions (this is quoted from the PDF)...

"Antidepressants increase suicidal thoughts and actions in some children and teenagers. But suicidal thoughts and actions can also be caused by depression, a serious medical condition that is commonly treated with antidepressants. Thinking about killing yourself or trying to kill yourself is called suicidality or being suicidal...

If someone is already suffering from a serious condition like depression, especially with suicidality, then why even go near a drug such as this with adverse reactions that include the very thing you're trying to cure ? More so, I was not diagnosed with a mental health condition when I was 6, so why even use a drug such as this ? As I say the logic seems all wrong.

Quote:
So modern medicine does not '"neglect" such things, but seeks them out, to better understand the many ways that a drug can work. Sometimes rare or difficult to observe adverse effects remain unknown until the drug is released for general use. I don't know about US practice, but the UK has a special reporting system, that monitors all drugs, to try and pick these up."
I am in the process of going through the report