7 posts were split to a new topic: Drs William Rassman and Jae Pak discuss Reddit comment about PFS
The PFS Foundation petition to remove finasteride from the market is 120 pages long. It is extremely detailed and filled with page after page of scientific data showing that PFS is real. You said the more people who fill out the survey the easier it is to prove the existence of our problem. Do you not believe the petition from the PFS foundation proves the existence of our problem already? How will me filling out a survey add anything to what they have already compiled in their petition?
Simply put, the more evidence we have of the disease, the better argument we have for its existence. Did Darwin go check out some Finches to theorize evolution and then all of science stopped studying it? No. Evidence still kept coming about evolution to reinforce it as a theory. This is what we’re doing with the survey: further reinforcing evidence of our condition.
The surveys include validated (in other words, used by doctors to prove the patient is suffering from a condition) questions that give us further evidence of our disease. We aren’t doing the survey just to fill the purpose of the petition. We’re getting more evidence.
I can assure you that @awor and axolotl didn’t pour hundreds of hours into creating It so that we could just give you a pointless activity. It helps us and it takes minimal effort which is why encourage users to take it.
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It generates data that has never been generated before.
Scientists will pay attention.
Petitions mean little in comparison.
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This definitely does generate data that has not been generated before and is valuable for this reason. It may give them some ideas to pursue their own research in the future. Doctors who are at least slightly open to PFS will look at such a survey more favorably as practitioners of science rather than medicine.
The Citizen Petition has merits for different reasons and has very different uses as such.
I haven’t done the survey yet for personal reasons, but will as soon as I can.
The overriding point is we shouldn’t be battling about what approach is the best or even better. We should be pursuing many approaches which improves our chances of making progress. The only reasons I see to constructively criticize other approaches is to reset expectations to reasonable levels or if you think it will actually reverse our progress (which is a real possibility in some cases).
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Apples and oranges. The 2017 petition is a literature review giving a history of the development of the drug, some key findings thus far in PFS patients, and reporting deleterious effects of the drug in animal research (which is not PFS). Along with case reports of individuals, it is a compelling case as to why this drug is deeply questionable with regards to both its safety and approval. It is largely a collation of literature reviewed in other publications, and is not primary research. The survey is primary research (“purposive non random sampling”).
The survey generates important clinical data that is for the first time illustrating many things that have never been able to be illustrated before, including symptoms across time frames and the outcomes of a number of important validated measures. As well as validated measures of symptomatic areas including sexual dysfunction and depression and anxiety, the survey includes respected measures of clinical satisfaction (how patients feel about their quality of care) as well as quality of life assessments. It is now by far the biggest and most comprehensive data set ever produced on the condition and reflects the symptomatic reports across the history of this forum, which before now could never be represented in standardised data. This is something in demand from scientists interested in the condition, and we have discussed with several the importance of this project as pilot data.
This year, a group of dermatologists have published in medical literature - based upon a single case they did not have psychologically assessed and without a history of mental illness - that PFS represents a delusional disorder. So no, the problem is not remotely “proven”, and yes, the data from the survey is necessary. The full clinical profile is not even appropriately appreciated, which is a key objective of the data. Looking in the survey results subforum will show you that, already, pervasive myths can be challenged with this significant volume of data.
Please help us by contributing when you have the time. It promises to generate important opportunities for us all.
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Do you prescribe #finasteride for hair loss or enlarged #prostate? Please use caution. There are consequences to playing with certain hormones. Too many patients are suffering. #Medtwitter @somedocs #alopecia #hairloss #erectiledysfunction #pfs
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This needs to be retweeted!!
I saw Dr. S. Cohen some years ago. I found him to be skeptical – suggesting it’s psychologically driven, related to depression – which surprised me. It seems he started distancing himself from PFS, and he was later removed from the PFS Foundation doctor list.
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I heard from the Foundation that FDA has not responded since its “We need more time” letter in March 2018. That was almost two years ago.
Maybe there’s a middle-ground solution where they make the risks much more explicit, as they’ve forced cigarette companies to make cigarette packs generic-looking and put huge, scary warnings on them?
Here’s what my urologist said:
I have many, many men who take [finasteride] for hair loss and I discuss the risks and they just don’t care because more hair and a more youthful appearance is much more important than any possible risks.
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Australia is not kidding around:
Looks like UK, France and Ireland intended to follow this example.
Do we have any graphic designers? Maybe you could design packaging for finasteride like this, with the right health warnings. And then we could mail them to Merck and FDA officials.
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Finasteride should come with a Tombstone graphic…
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There are also [citizen’s] petitions for changing the labels on SSRI/SNRI meds and Accutane that have been in limbo for over a year now.
The FDA is nonchalant. It’s not them or their spouses or children. If they are pressed on the issue, they will cry that they are underfunded and understaffed.
It’s funny how they won’t even follow step with the MHRA or EMA now. So, what kind of blackmail material do you guys have in Europe to get your regulators to regulate?? j/k
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I think there is more social capital in Europe - i.e. people care more about their compatriots and have a stronger sense of belonging. In North America you mostly care about your own family.
I feel the petition was submitted at least 5 years to early. The FDA are interested in patient numbers. The petition has around a dozen accounts of PFS suicides from family members. This is nowhere near enough to force a ban. Did the Foundation seek out legal advice on petitioning the FDA for a drug ban?
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Agree, no chance to get it banned or adjusted at the current level of scientific understanding. This was wishful thinking and a waste of resources.
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That’s dumb. The petition provides evidence from a Merck exec who, under penalty of perjury, admitted to withholding critical data from the warning label. If that won’t get them to at least change the label to make it simply ACCURATE, the FDA wouldn’t have done it for any other reason.
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Not only that but the Foundation shown its hand to Merck and revealed its true intentions way to early. Merck would be forced to retaliate and we become collateral damage in the fallout. If you’re gonna take on a huge corporation you need to come with everything you have rather than jump in impatiently and get swatted away in the early rounds. This is high stakes poker played in the murky shadows and not some gentlemens game based on rules of honesty and decency. I’m upset that our lives weren’t even considered or the damage it could potentially do to our studies by petitioning so early.
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