Bipolar Disorder Community
How to Spot Misinformation?
About This Community:

Bipolar Disorder is also known as "Manic Depressive Disorder". This forum is for questions and support for people with, or for loved ones of people with Bipolar Disorder. The forum covers topics ranging from Aggressive Behavior, Affect on friends and Family, Alcohol and Drug Abuse, Appetite Changes, Chronic Pain, Denial, Depression, Difficulty Concentrating, Euphoria, Guilt, Manic Depression, Medications, Mood Swings, Poor Judgment, and Sleep Disorders

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

How to Spot Misinformation?

Its important because sometimes people come here citing studies or treatments that are blatant misinformation. People may act on it. Obviously, people should clear all information with their psychiatrist first but some as its highly new information (such as the antipsychotic agent I am in study for) may be new information for them as well (providers have a working base of knowledge that expands, it doesn't include all current research). Most anti-psychiatry sites are easily proved wrong because they have no valid information. Its easy to take the statement "mental illness doesn't exist" by itself and prove it wrong. But others site studies but come to wrong conclusions. And the studies themselves may not be valid. One site warned against use of anti-psychotics "because they caused tardive psychosis (an extremely rare criteria in itself in study) in rats". I looked back at the original study and first of all the agent they studied was an anti-nausea medication and secondly since rats don't have thoughts like people they can't experience psychosis. Yet a site like this would cause someone to want to stop medication but appears to have "proof".
  Another site much more of concern listed natural remedies that were mood stabilizers. This one concerns me more because before recovery I acted on it and Tyrosine and Taurine had dangerous results. Yet it was supposedly from a group of practioners. My psychopharmocologist said the information on it was not valid. He has the time to comb through studies for accuracy. Your average provider is time limited and may not. Obviously even some clinically valid studies on one person are tentative. They need far more research to conclude anything. The point is some sites are blatant misinformation (that the use of Lithium Orotate is safe, actually its highly dangerous). People come here cite these links and not only are using them to come to their own conclusions. They are trying to convince other people that they are accurate and it could result in people wanting to stop medication or obtain easily available natural remedies that shouldn't be available in the first place. How can we prove them wrong?
Related Discussions
9 Comments Post a Comment
Blank
Avatar_f_tn
Hun, please don't take this the wrong way, but you seem to be stuck on studies and affects of medications. Do you think you may be having some obsession over this? I only mean the best for you, but I'm a bit concerned about what you're doing. Know that I only have the best intentions in mind. You are a valuable member here, and you have educated me and giving me food for thought.
Jane
Blank
585414_tn?1288944902
I am concerned for other people's intentions. I was talking about blatant misinformation that has appeared here. Lithium Orotate as I mentioned is highly dangerous. People have posted information on obtaining that. The website which I will not name encouraged me to try Tyrosine and Taurine. It appears to be a reputable site about alternative mood stabilizers. Its information is dangerous.
  As for glycine, it worked in me as a primary antipsychotic. That doesn't mean it will for other people and at that this point its still a compound in Phase II FDA study. That's why I don't provide information on how to obtain it. Ever. In fact I signed up to sites where people were self medicating with it and told them not to. As for the idea that glycine as an adjunct is being used in a Phase II FDA study that's a fact. And that the glutamate antagonists are overall are a more effacacious agent. That's a fact as well. People will have to wait. But the link to either study is factual. Tardive psychosis is a criteria that's been identified in me. I am not cautioning other people or tried to find symptoms of it in them. Its my disability and its incredible rare and I was able to get it treated. If I am doing advocacy its to get treated in other people may have it. And for there to be a working glutamate antagonist on the market. I can't post the multiple provider agencies who have confirmed both of this in me in a thread but I can pm them to anyone.
   The information I generally provide people ended up on the resource information here. Such as "Depression Central". The only ones that didn't are the list of independent living centers. They help people with benefits advocacy and housing advocacy. They don't make medical reccomendations. And if someone had signs of a movement disorder as they described I had a medically valid site about tardive dyskinesia (which itself says "some of these medications may be neccessary" and I encouraged them to speak to their psychiatrist about it and furthermore to post in the neurology forum. I am on glycine because I couldn't tolerate any other antipsychotics including Clozaril. I don't guarantee people will recover as I did. I would encourage someone to start on a standard antipsychotic. And the medications that I found helpful for tardive dyskinesia, many of which are not often used but all clinically valid and in standard clinical studies were suggested to other people with that disability who had it diagnosed. I've met some of the researchers in fact. They work under FDA guidelines.
  Now back to what I was saying, I'm not going to call up specific threads and some have been deleted. We may not have believed the reccomendations but other people may have. What would you say to someone who is convinced they will be helped by Lithium Oratate? Or due to some misinformation that "mental illness does not exist"? How do you address that? I want them to go back to standard treatment as much as you do. What would you say to them?
Blank
607502_tn?1288251140
Taurine as an MS

Holy batboat batman thats just stupid, did they add in Creatine and Caffeine... Sigh.  Ive seen that as a mood stabiliser as well.

I agree on the way things are presented - the Lithium Orotate pushes cannot get over themselves in the rush to sell it as a safe alternative to Lithium Carbonate most of the time screaming that its safer and needs less titration and is theraputic at a lower dose and you do not get toxic.

All of those are by the way for anyone reading wrong.  In some cases dead wrong.  Then look at St Johns Wort which can be dangerous in so many ways.

This is what bothers me when someone comes on and starts talking about their natural therapy or treatment plan.  I always find it hard to understand how some people can ignore the advice of their doctors, most of it gained at the blood price medicine so often pays, who may have 10 or more years education for the advice of a guy or gal at the local health food shop / naturopath / faith healer / web forum.

I have used a naturopath in the past, had a good one, i love a good ayuverdic massage but I avoid vitamins for the most part as my doctors prefer a balanced diet to pills where possible.  Nothing can replace a doctor, yes you should follow the rule and remember that not all docs are good and that they work for you and be an educated consumer but tell me this - who is best qualified to make sure that the pills he gives you wont hurt you -

Psychiatrist with 10 or more years school, experience and access to Prescriber Databases on drugs and experience with them

That nice guy down at the health food store who sells you the omega 3 and has this supplement he read about on the internet.  He says its safe.

I am amazed people can go for B but the do. Sigh.
Blank
Avatar_f_tn
As far as I'm concerned I won't put any medicine in my mouth, with the except of Omega 3's and my multivitamin, unless it's been approved by the canadian version of the FDA,. They are far stricter in Canada on what will be approved, and I truly appreciate that. There are too many quacks out there spouting miracle cures. I know there are a lot of studies being done which can improve our quality of life. I can't wait, but then jumping on the bandwagon isn't good either, Cymbalta is not a good drug for me amd it's caused hypomania in many people. I no longer read those ads for new drugs.  
Blank
607502_tn?1288251140
I have a thing on my iphone called epocrates - my next door neighbour put me on to it; hes a paramedic and they use it all the time for patients and drugs - its free and you plug in the name of the drug or generic and it gives you all the info, interactions, black box warnings and even pill pictures for thousands of drugs  its very usefull when talking to a doctor I find and available for Windows mobile and Palm Pilot as well.

Weapons in the armoury - be safe be educated.

Miracle cures, faith healers, quacks, charlatans, fraudsters - they pray on us as much as cancer patients sadly.
Blank
585414_tn?1288944902
  I wouldn't read drug ads regardless. The purpose on them is to get a person to take a specific medication. There were no ads for prescription medications until recently. There must have been a specific law to allow this in the U.S. and I believe it should be overturned. The difficulty with face with mood stabilizers is that except for Lithium all other mood stabilizers were other medications first. And in the U.S., a doctor can prescribe any medication for any purpose. It took forever to get Lamictal approved as a first line mood stabilizer but it was in clinical practice way before then. I was on Lamictal for a good while starting in 1998. Its only Lithium, Depakoate and Lamictal that are first line mood stabilizers approved specifically for that usage but there's a large amount of medications beyond that that are used as mood stabilizers. Some of less effective. Some have more side effects. And some aren't known yet. But they all are approved medications regardless.
  I think its important that if a particular medication is working for us we explain why. Each person reacts differently to every medication. I know with bipolar, some mood stabilizers would be used for rapid cycling if that's part of a person's bipolar symptoms. But I can't be sure what is rapid cycling and assume the part of a clinician. But a good resource site like "Depression Central" will let a person know this. And they can bring that information to their psychiatrist as they may not be able to afford a mood disorders specialist but have some good updated information to bring them. I guess with me I was always looking for something that worked. I kept up with antipsychotics as they came out and everyone that's out there ever since I saw my psychopharmcologist since 1996, I was on it within a few weeks after it started. I don't reccomend this and he wasn't entirely happy about it himself. But he consulted with the people who had studied the medication and asked about it and then after using his clinical judgement started me on it. And for mood stabilizers, they were also already approved medications. And the few natural remedies were ones he went through multiple studies and found good results. He and all providers have access to websites only a physician can sign up for. And know how to interpret the results.
  I'd never second guess my psychopharmocologist. And before recovery the times I did I had severe results. The tyrosine sped up my blood pressure to the point where it was dangerous and if I hadn't been on Atenolol for controlling e.p.s. I could have died. The taurine made me psychotic (that's a fact I post everywhere because its the active ingredient in Red Bull Energy drink which they are trying to ban). I was really angry, not at my psychopharmocologist, of course but the site which was supposedly run by clinicians. But internet laws are weak and its free speech although its blatant misinformation. The worst thing was when I was convinced in 1993 by a bunch of anti-psychiatry quacks to go off medications and take Bach Flower remedies. They had a very effective placebo effect lol. On the other hand the hospital stay that followed going off medication wasn't funny. And that's what I want to prevent.
Blank
607502_tn?1288251140
Drug Advertising for prescription drug is banned in Australia in almost all ways - the name cannot be referred to for example.

There are also restrictions now on the gifts and incentives that can be given out to doctors as well.  

But then again our medical system is socialised and heavily regulated.  The US system is unregulated and even the FDA cannot be trusted not to make a mistake - look at Vioxx.
Blank
585414_tn?1288944902
Well I knew Vioxx and Celebrex were helpful to some consumers I worked with who had arthritis. Many. And when they had to go off them, the other options weren't as good. And the statins people take as anti-cholesterol medications have some potential hazards but some people even with a proper diet need them to keep their cholesterol down to prevent coronary arrests. Its difficult when there is a severe disability that needs to be treated. Agents used as chemotherapy for cancer and radiation are not too safe in themselves. But they are often life saving. The FDA has actually reformed certain laws and is now investigating older medications for safety and efficacy so that certain cold medications were pulled from the shelves. And the APA is trying to cut ties from the pharmaceutical industry but that's the first place they need to get their information from so they can't be entirely apart from them. I only get upset when something like Wellbutrin is reapproved as Zyban to extend the patent and prevent generics from being released.
   Its important that a person can have concerns and not be anti-medication. A relative had some long term effects of Chantix for smoking cessation and I told her to have her doctor report it to the FDA. It will go down as a stastistic and with medications like Vioxx if it comes up enough they will take action. On the other hand Thalidomide is now being used again safely as a medication. But pregnant women can't take it. And MAO inhibitors are available in patch form where I don't believe you have to worry about not eating foods or taking certain medications. So things can be modified. But sometimes a person takes these concerns and throws the whole idea out of taking medication even though there's no guarantee what they get from the health food store shelves in safer. In fact quite the opposite.
   The difficulty I've had was not just people who anti-medication or promoted unknown natural remedies but were what I called "drug salesmen". One person at this mood disorders support group kept telling everyone to go on Clozaril. Its not that Clozaril didn't help him. Or could help other people. And even though I and many other people couldn't tolerate it, for some people it treats treatment refractory schizophrenia or brings them out of a suicidal state. But its not a "miracle drug". I wouldn't call any medication that. The term just isn't scientific. On the other hand if someone is starting on medication and is concerned overall or wants to change things, some general ideas on exactly how medications will help them is good information so they under what they are initiating is part of the recovery process. Even as needed if a person has to go to the hospital. If they approach it with that attititude it doesn't seem frightening but positive and so will be the results.
   And regardless the end result of a discussion should be some positive, constructive ideas regardless. Occasionally someone could enter here who is a spam artist to promote something. But more of concern is when someone has been mislead by the anti-psychiatry crowd or a useless natural remedy and tells everyone they've "seen the light" when they really are closing people's minds instead of opening them.
Blank
Avatar_f_tn
I believe we've already had a spam artist or two in here already. What a shame.

I wish we had those regulations here in Canada, I think the consumer has the right to know the true workings of some of these medications.

What has been my saving grace has been to educate myself.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Bipolar Disorder Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
Top Mood Disorders Answerers
585414_tn?1288944902
Blank
ILADVOCATE
NY
1551327_tn?1408668686
Blank
Bubulous
Tompkinsville, KY
Avatar_f_tn
Blank
remar
st. louis, MO
Avatar_f_tn
Blank
Anneinside
MN
1985196_tn?1402193698
Blank
stormbear
Canberra , Australia
Avatar_m_tn
Blank
Kermit the Hermit
Lost My Mind & House, IL