Cyberchondriacs Trust Online Forums More Than Medical Professionals
In a recent comment on the blog, a reader brought up a term I wasn’t familiar with — cyberchondria — which is when a person will escalate their concerns about symptoms based on what they’ve read online. It seems like half the questions this blog gets are from cyberchondriacs, or rather, people who tend to play armchair doctor or fantasy biochemist when it comes to medicine and disease.
Have you noticed an increase in know-it-alls coming into your practice in recent years? It’s always good to educate yourself, but are we starting to get to a point where a doctor is just someone we need to see in order to get a prescription for something that we’ve already diagnosed ourselves with?
That is a good point. “Cyberchondria” is not only limited to BaldingBlog. With the rise of the Internet, doctors battle with patients that diagnose themselves on a day to day basis. Of course it is good to educate yourself, but I would think hypochondriacs and/or cyberchondriacs make for a formidable nightmare for a lot of doctors.
As a physician (of over 30 years), a fan of the blog, and an advocate of patient education/responsibility, the observation that everyone is an expert in medicine is nothing new. Sometimes people get confused between the virtue of educating themselves and being experts on areas that they are not experts in. One of the great lectures I have heard is the 1974 commencement address at Cal Tech by Richard Feynman, the Nobel Prize winning physicists (and character!).
https://calteches.library.caltech.edu/3043/1/CargoCult.pdf
Dr Feynman talks about “cargo cult scienceâ€, which is the tendency for individuals to select information that supports their position rather than consider all the information available. One should not be too dogmatic about ideas as science does evolve and new info becomes available. But the “Propecia side effect crowd†seems especially averse to data (even the desire for scientific study), and rely primarily on selected, bias, retrospective observations on blogs, even when detailed scientific data is freely and publicly available in the regulatory and medical literature. Of course, from their view, this latter data is ‘biased†and a result of vast “conspiracies†between the pharmaceutical companies, regulators, and medical community. In other words, the creation of mental frameworks that allow only information to be assimilated that fit ones cognitive framework. In some cases, this Propecia fanaticism is also exacerbated by a lack of knowledge about how one collects information (the scientific method), and this is the challenge of physician scientists. A recent great post on this site arguing for a prospective evaluation (study) of those beginning Propecia (say 200 patients) to better understand who might be at risk for possible long-term side effects was met with a comment (the first) about why one would expose such men to the horrible side effects of Propecia, the unethical nature of such a study, etc. As my daughter would say “lolâ€. Tens of thousands of men begin Propecia every day. This proposed study would just voluntarily enroll men already beginning Propecia. But, part of cargo cult science is also not understanding how the scientific method works and confusing “proof†with “opinionâ€, “observation,†and “belief†– and confusing causality with correlation (because two thing occur at the same time doesn’t mean they are causally related). As another commenter wrote (paraphrasing), why should this phenomenon be studied. He read articles on it in blogs so it must be true! So, my argument is that more scientific study of the possibility of permanent long-term side effects of Propecia should occur, but it is the “Propecia side effect crowd†who ironically are the most adamant against this inquiry. Part is because they believe that they are experts in science, medicine, and clinical investigative inquiry . And, of course, how many more commentators will talk about how they know that masturbation causes baldness because A = B= C.
This pretty much sums up propeciahelp to a T.
When I started taking propecia I found their website and read all the horror stories… and wouldn’t you know it? Within a day I had trouble getting an erection, couldn’t orgasm, my mind felt foggy, etc.
A couple weeks later I started to see more and more signs of hypochondriacs over there than actual scientific literature… and most of their studies had selection bias or used anecdotal experience. I stopped reading and caring about that website.
A day later, my “side effects” disappeared and I’ve been on the drug for years now (with great success I might add).
For the record, I’m not saying side effects aren’t real… at the end of the day it’s up to the patient to judge whether a medication is worth taking or not. However, I think the power of suggestion is a powerful force, and sites like propeciahelp may do more harm than good.
Dr. L’s post seems disingenous and also interested in trying to discredit and harm those that have become victims of Propecia. Contrary to what Dr. L claims, PFS patients have been adamantly working to organizing scientific research so that the medical community may better understand what has happened to them in hopes of one day discovering a cure, or even just a working treatment which does not currently exist.
One innocent scientist that has already undertaken a study regarding post-finasteride patients petitioned Merck for funding to study their blockbuster drug and they unsurprisingly rejected the request.
Following a group of 200 Propecia users is extremely unlikely to yield any interesting results, especially since the persistence of Propecia side effects is not very common. A much larger body is needed to conduct a useful study, and in fact this has been done in the past and has been ignored by the ‘doctors’ that post on this blog.
It is a shame that hypochondriacs may fall into the pattern where they believe they have PFS, but in reality this coincidence does not prove that all PFS sufferers are ‘hypochondriacs’. In fact it is far from the truth and the majority have problems that have been objective diagnosed, but not understood, by medical practitioners. Detractors will try to label PFS victims as hypochondraics but this tactic is destined to fail as there are very simple ways an individual can disprove this misconception.
Grant, if Merck responded to the petitions to help fund a study to determine the cause of these side effects, would they not be admitting their medication is to blame? The very same group of people petitioning for funding are also suing them because of side effects! If Merck agreed to help, they would not only be admitting guilt, but funding the very studies that would hypothetically sink them in the court room. You seem to insinuate they did this because they are a heartless corporation, but no company in the world would agree to an arrangement like that and shoot themselves in both feet.
You and I are well aware of how many studies have been conducted on finasteride. Many of them are large in scale, placebo controlled and produce some extremely significant results, but no PFS. You said that these have been done in the past and “ignored”. What exactly do you mean by that?
Hypochondra is a certainly a potential explanation, but there are also many conditions rooted by anxiety that can produce hundreds of symptoms. This is extremely hard to disprove even by a psychiatrist, because the person suffering doesn’t even know what the root cause of the symptoms is. Finally, the simple act of telling yourself something over and over enough times is sufficient to convince your mind that the symptoms are real. The human brain is more than capable of making these symptoms manifest, and depending on the extent of these beliefs, they can persist indefinitely.
Being as impartial as I can be, if I look at this situation, I see there is no conclusive or strong evidence showing that finasteride causes these symptoms. Quite to the contrary, it has been shown to be safe and well tolerated. My first natural thought is that something else is causing the symptoms. The examples explained in my previous paragraph can account for almost every symptom described by people with PFS. It’s not only the most likely conclusion, it’s pretty much the only conclusion one could reasonably make.
You can’t blame people like myself, Dr. L and Greg for reaching these conclusions because they are simply the most logical and obvious answers.
Absolutely not! They would be indicating an interest that they care about the safety of the people to whom they sell their product.
In a world in which a company knows its product is causing damage and harm to its customers, the noble and ehthical thing to do is rectify the situation and not fight tooth and nail, slander, and belittle those who legitimately oppose it. In the past, Merck has known about risks in Vioxx and vehemently battled its victims to the very ened and then subsequently elevated its general counsel to CEO.
The largest placebo controlled study with finasteride and 5,000 patients did show that 2% of men had irreversible erectile dysfunction. There are a lot of studies that did not find these side effects which is believable. The side effects are rare and the studies are not designed to check for these very intimate biological functions. It is logical that clinical studies could overlook such a sensitive problem, especially when the company is conducting the study and has every reason to demonstrate a full safety profile.
You are completely wrong about hypochondriasis and it is easily disproven by a psychiatrist and other objective tests (which it has been). This argument is purely a red herring and will not be addressed further by me.
Dr. L has previously stated that he believes in the existence of post-finasteride-syndrome and requests more directed research. The PFS community would approve of additional research.
Also to add, one would think that if Merck believed the side effects did not truly exist they would easily be able to disprove the public concerns with the drug by sponsoring this study. If the side effects were not as a result of Propecia, the results of the study would show this. However they did not want to fund the study and hopefully the results will be published in the next year.
Merck (as a whole) doesn’t care about the wellness of their customers. Every other pharmaceutical company also shares this same viewpoint. It wouldn’t benefit Merck in any way to fund a study like this, and it could easily be used against them in court. In business, being ethical and noble can cost billions of dollars. It’s all about fighting tooth and nail to reduce lost profits and keep shareholders happy. It would certainly be fantastic if Merck decided to help fund these studies, but if they can’t make money (and will almost certainly lose it) there is no reason to for them to do so.
Merck doesn’t know that their product is doing harm. The FDA can’t even draw the conclusion that the drug causes these side effects. The best they could do is say it’s possible there is an association based solely on the cases reported to them, but they still think it’s a completely safe treatment.
Hypochondria is one of many possible explanations, but I don’t believe it is most likely. There are several conditions that present symptoms very similar to PFS that are strongly linked to anxiety and depression as a cause. Simple generalized anxiety disorder can produce almost every symptom that PFS is associated with. This won’t explain every single case, but it certainly is a potential explanation that warrants some sort of consideration.
I believe I know which study you were referring to, and it involved just over 3000 men. It’s been a while since I looked at the full text, but when you look at the figures closely you will see there isn’t much a statistical significance at all. For starters, it was done on men in their 60’s and half already had a history of sexual dysfunction. The study discussed the reversal percentages between the two groups and concluded that it was consistent with the sexual history of the men.
These findings also conflict with even the circumstantial information we have. Propeciahelp consists almost entirely of men who had symptoms from Propecia. I was hard pressed to find a single man that ended up with PFS while taking finasteride for BPH, even though more men are taking it for this condition, and it has been on the market for longer.
Nearly everything you said in the last post is patently false. Merck is losing a lot of revenue from people who are hesitant to take the drug because they feel it is certainly not worth risking their sexual health. If they were able to prove the drug was safe by funding a few studies, it would certainly be worth the cost.
Additionally, anxiety and depressive disorders cannot explain many of the symptoms of PFS. However, 5-ar is responsible for the creation of neurosteroids which cause depression and anxiety when inhibited. Anxiety and depression do explain symptoms like watery, clear semen, gynecomastia, latent nerve conductivity, or depressed hormone levels.
I know of many men who took finasteride for BPH and developed irreversible sexual dysfunction. They are a little harder to find on the internet because comprise an older demographic and don’t post on online forums and blogs.