Guys, read the email sent to me by Anne Ganzer, this is a survey on the mental side effects of Finasteride, hence why the questions are tailored as such. The previous paper published by Dr. Jacobs helped advance our cause, I see no reason to believe why this 2nd paper wouldn’t achieve similar objectives if there’s enough participation.
If you have concerns about the study questions/structure etc, email Anne directly at the original link for the survey.
Thanks Mew.
Allow me to clarify my position in more detail.
The problem lies in Jacobs use of ‘off-the-shelf’ questionnaires such as Beck’s Depression and Anxiety Inventories, the Ten-Item Personality Inventory, and the Hope Scale, among others. These questionnaires are geared towards, otherwise, healthy individuals, and are not at all suitable for assessing the persistent cognitive, and physical symptoms induced by Finasteride. Hence the question on page 1, “In general I am in good health?”. Well, no, none of us are, we have PFS. Are we expected to exclude our PFS symptoms when answering that question?
The second problematic question is regarding “numbness or tingling”. This is misleading when administered in this particular context. How so? Well, genital numbness is a prevalent symptom, therefore most people will respond by stating they are “severely” bothered by numbness. However, as previously stated, the questions are geared towards otherwise healthy individuals who do not have drug-induced genital anaesthesia, or any other form of induced anaesthesia for that matter. Further to this, the Beck Inventory defines numbness and tingling as “a common symptom of anxiety”. Therefore, if members of this forum answer “severely” to that particular question - with reference to their genital numbness - they are unwittingly identifying with a common symptom of anxiety.
Additionally, the question regarding “loss of interest in sex”, taken from the Depression Inventory, is also misleading as it too is intended for healthy individuals with normal sexual function. PFS induced loss of libido, for many, is a complete silencing of visceral sexual signals - no longer can we feel the instant chemical reactions associated with arousal - they have been abruptly switched off. This is not a “loss of interest”, or a lack of erotic mood, as the survey would suggest.
I genuinely cannot answer the questions appropriately, as there is no option to contextualise my responses.
The use of the Ten-Item Personality Inventory is laughable at this stage for so many reasons. There are many personality questionnaires, most of them widely regarded as useless. Jacobs has selected one of the worst. Just 10 questions to clinically identify a given personality type. He may as well ask for our zodiac signs.
Whether he wholeheartedly “believes” or not, is not the issue. His approach to investigating the cognitive symptoms of PFS is faulty. Given the fact that he has seen so many patients, he must have an idea of the type of symptoms they report to him. He has made no effort to adapt the questions in order to accurately reflect our experiences.
If he really wants to help, then he should try consulting a Neuropsychiatrist who is experienced in devising bespoke questionnaires for patients with neurological disorders.
Better still, why not move on to empirical investigations, perhaps the use of more tangible methods.
Thanks for clarifying your positions clampdown and Mew. Given what you’ve posted, I think I’ll do the questionnaire.
You’re welcome.
Mark-uk- well stated, I felt the same, anyway I answered the questions would be completely misleading and would provide inaccurate information. The questions had such a sense that the person who constructed them never met a patient with PFS, not one who has
treated hundreds in the last decade
I have also seen Jacobs a few times. He believes PFS is real. I don’t think he believes it is -caused- by anxiety, but certainly he believes that treating the anxiety and sleep problems are a key component in restoring the body’s balance. Now, I don’t think he is as well equipped as Baylor or Brigham’s to do a real study. And from the few lab courses I took in college, the survey seems a bit informal…He’s kind of a maverick, trying to figure this out on his own- with debatable success. But as others have said though anyone attempting to validate PFS is a positive thing. From my own experiences with Jacobs, he doesn’t believe this is “all in our heads,” but rather that the shitty hormonal profile is causing the mental states and creating a vicious cycle.
In the UK if you have a testosterone level of 8nmol/L or less then the NHS will diagnose you with Low Testosterone and provide Hormone Replacement Therapy. If your testosterone level is above 8nmol/L then you are diagnosed with depression. If your T level is above 8nmol/L and you take testosterone and it makes you feel 100% better, then a Dr can say you have had a placebo response to the treatment and you are still depressed. This is Dr thinking and it happens all the time. This results in men having to go private for testosterone treatment because the NHS does not want to pay out for treatments and hides behind out dated hormone guidelines.
From experience, I‘ve learned that Dr’s who want to blame testosterone issues on the mind i.e. depression, often use lots of questions relating to mental health in their initial consultation. Dr’s will hide their thinking and use questions to lead you down their path, so they can build up a bank of answers to support their theory. They will take the happiest memories in your life and say these caused emotional stress resulting in your alleged depression.
If Dr Jacobs is focusing heavily on depression and anxiety in his research then good or bad this surely has a place in his thinking with regards to PFS. It is not impossible to believe that a Dr won’t blame PFS on the mind, because they do it for other medical conditions. Dr’s have a long history of blaming medical conditions on the mind. Google Henry Cotton and you can read about a Dr who treated psychiatric conditions by removing patients organs and teeth, because he believed the organ contained an infection, which caused the mental health problem. This shows the extent that Dr’s have gone to in the past to link mental health issues to absurd theories. Let’s hope that Dr Jacobs isn’t planning on attributing PFS to a mental health problem because this will only cause more harm than good. Also, online questionnaires are a very good way of obtaining a large number of participants; mainstream Dr’s favour large scale studies or those with greater participants.
All, I received a followup email from Anne requesting I re-post about her and Dr. Jacobs’ anonymous study on psychological side effects. I am bumping this thread as such. See below for details and link to survey.
Dr. Alan Jacobs is conducting a followup study to the recently published paper: Persistent Sexual, Emotional, and Cognitive Impairment Post-Finasteride - A Survey of Men Reporting Symptoms ( ncbi.nlm.nih.gov/pubmed/24928450 )
If you took Finasteride, do not have any pre-existing conditions and are suffering from persistent cognitive/psychological side effects (anxiety, depression), complete the new followup survey:
[i]Dear Propecia Side Effects Forum Members,
We are looking for participants for an on-line research study investigating the psychological effects of Propecia on men. If you participated in our initial research study, thank you. The first study was published in the June 2014 issue of the American Journal of Men’s Health. It is our hope that through research we will learn better ways to treat this illness and raise awareness of Post-Finasteride Syndrome among health care providers.
We are embarking on part-II of our research. We are very interested in trying to find out why some men that take the medication Finasteride for male pattern baldness experience severe psychological side effects including anxiety and depression both while on the medication and even after they stop it for months, even years.
Over the past several years we have seen an alarming increase in the number of patients that experience significant cognitive and psychological symptoms. In an effort to understand why this happens we are collecting information pertaining to these specific problems with the hope that we may determine some associations.
This is an anonymous survey.
You are under no obligation to complete this survey or to answer any of the questions that you do not feel comfortable answering we just ask that you exit the survey and we will delete the incomplete file. Should you choose to complete the survey please complete the entire survey as skipped questions make it difficult to interpret the data.
If you would like to participate in this research survey please click the enclosed link and follow the prompts. If you choose not to participate in this research survey please delete this email.
[Size=4] surveymonkey.com/s/finasteridepsych
[/size]
Sincerely,
C. Anne Ganzer, PhD.
Hunter College
NY. NY.[/i]
I’ve seen Jacobs. Honestly I think he offers nothing beneficial to PFS at all, just profiting off of all this. He gets it, and he may care, maybe but he is years behind in treating PFS from what this forum has already proven. A shame people go to see him.
And honestly, Jacobs thinks much of the anxiety we experience is all in our heads. Other than acknowledging this problem exists, he has done little for PFS research.
His practices are specious. He promised the follow-up phone call after the initial in-person consultation ($600) would be completely free. When we had the follow-up he asked me how I was going to pay for it. I reminded him that he said it would be free, he had NO recollection of any such agreement and insisted that I pay. I refused and reminded him that we had a deal and so he relented and said he would “let it slide this time”. He didn’t even answer any of my emails after the initial consult. The only thing he had to offer was either TRT or clomid. That was obviously my last visit with him.
Yeah I emailed Jacobs initially and he wrote “first step in treating PFS is to find a dose serum
response.” Fucking crock of shit. Scammer. Like the whole system is a scam
Last thing lll say is Jacobs at least acknowledges we suffer from a biological abnormality nobody understands but that he is happy to try to treat it. What is wrong with these people?
Cool, done.
I have actually contemplated filing a class action law suit against his practice. There are various causes of action I can allege (don’t really want to say them here).
For me, beyond the initial despair of the situation, the overriding mental effect is apathy. Testosterone is the drive hormone, it’s what has propels men into extraordinary feats.
Jacobs is doing nothing wrong. Ethically perhaps but save your energy for Merck and perhaps your own doctor. I’m going after mine as we speak. Jacobs is just another piece of what is so fucked up with our medical care system. Guys like him need to get beat up, not sued.
If he has engaged in medical malpractice then he ought to get sued, and no he doesn’t deserve to get beat up, that’s awfully thuggish sounding. I think this study is just lip service. Maybe he wants more recognition for himself so he can get more patients, I don’t know for sure, but these survey studies don’t really add anything new or valuable to this problem. It’s a bunch of questions answered by a bunch of men which is really quite easy to arrange in order for him to publish that there may be some credence to this “post-finasteride syndrome”. Clap clap clap (applause). Give me a fuckin break. A more comprehensive and credible study was done by Irwig a year prior. When I suggested the removal of the drug off the market during an office visit he said ‘NO’ in a seemingly condescending way as if to suggest that that sort of action is totally unwarranted and ill-advised. If you ask me, I think he’s a slick talking snake-oil salesman in a white suit and stethoscope.
Well said bizbee. I think you summed up his intentions perfectly. A real fucking pioneer in identifying and quantifying our plight.