100% complete nonsense. It’s interesting that Shippen, Goldstein or Jacobs cannot come up with a single verified recovery yet suddenly people on the forum pop up with knowledge of several, unconfirmed forum members no less. Time and time again when asked for labs to further investigate “recoveries” for all our benefit those people leave due to other member’s “cynicism”. Thankfully treatments are based on science, not internet anchedotes. The “recoveries” section was full of those who declared 100% recoverd only to come back a week later and say their ED was only 80% better or w/e. That is exactly why the “recoveries” section was shut down, and wisely so. As we search for answers to what happened to us it’s mind blowing that we have people here who are so mislead. Only weeks after a milestone research paper is published verifying what we all know, that we have a permanent condition, other supposed sufferers come to post that it isn’t true. Makes you wonder what their motives might be…
Along those lines… I’d ask you to name this person who is recovered so we may learn valuable information from his story.
It’s not worth naming the recovered member in question since you already posted a dismissive comment in the recovery post they originally submitted. So what do i do? Name them again for you to dismiss them again? We just end up going round in circles.
In respect to the milestone research paper I have read the terms ‘possibility of permanent effects’ and ‘persistent side effects’ but not the part where it categorically states the effects are permanent. Please don’t read this as a challenge - I just haven’t read the entire report and would like to know if the paper does indeed state this as a fact.
While I agree the prospect of recovery does appear bleak you must concede that Shippen, Goldstein and Jacob have only had access to some but not all sufferers. Yes they are the closest we have to an authority on this subject but not all PFS sufferers are based in the US so if for example someone from the UK should recover how are they to know about it? However I would certainly agree that the lack of recoveries is alarming.
As for motives, what are yours? Why be such an active member of this forum if you truly believe you have a permanent condition? Please don’t get me wrong I am by nature a cynical person (well others say I’m cynical, I say i’m a realist) and with the current evidence available to us it is extremely difficult to remain positive but I believe that deep down, like myself, you must still hold hope otherwise why bother participating in this forum?
On another note, regarding the recoveries section what is the official word from the forum administrators? Are we to dismiss all the recoveries featured or is it for the individual to assess their reliability? This is a genuine question. I assume the administrators must vet the recovery claims as much as possible.
Of course you won’t name the person as they have undoubtly put forth some ridiculous idea as they have recovered via aroma therapy or other such idiocy. Because their story falls completely apart with the least bit of scientific or medical scurtiny. Believeing anything you read without a moments consideration of where it is coming from or how much sense it makes scientifically is more the realm of a 9/11 conspiracy theorist than someone who is seriously engaged in trying to find answers for PFS. In doing so you make the entire community of sufferers look like fools by association.
The entire medical community believed that all side effects went away after discontinued use of the drug because that was the company line. We all heard that from multiple doctors before we landed here. Actual research by someone of the caliber of Irwig showing that side effects absolutely do continue after cessation legitimizes PFS. Yes, that is a huge and necessary “milestone” for this community. That does not mean myself or anyone else believes there is no hope for us. We needed this research to expand into a further microbiological investigations of PFS. That fact seems to escape you and far too many others on this board. As BP and others have stated, we all know this is going to take some sort of intervention to fix.
The administrators of this board give miles and miles of leeway for all sorts of nonsense that is put forth. If you need an example just go check out the the 80 odd page prostatitis thread which led to many members getting worse and wasting tens of thousands of dollars. Of course they didn’t have the time to “vet” the recoveries section. How could you think that’s even possible? But, when numerous stories were flat out completely false, had people who never had PFS to begin with, stories which fell apart under any scrutiny whatsover, people who “recovered” to come back in a month saying they were back to full sides, etc. Obviously this was very confusing for us as sufferers and for those who are attempting to find answers for us. It’s truely unbelieveable we have people here who won’t, for whatever motive, comprehend this.
On the money Luckfax. There’s a disconnect between the guys that are still trying to get their life back managing one or two problems and the guys that are suffering with more of the persistent symptoms.
Hey, @jinstewart, we have issued email invites to our survey which informs of symptomatic changes over time. This is by far the most useful way members past and present can inform us of what they experienced and how that has changed over time. We do already know from members and primary published research that some people improve to varying degrees over time, while others do not.
