I think the dataset isn’t particularly cool, but rather useful for the following reasons:
- Many new sufferers are told that the condition is untreatable.
- They are told that any attempt at treatment bears a very substantial risk.
- They are told to wait, hope to improve in time, and fill our the survey and post their heartbreaking story to the internet for all to see. They are told to sit tight and wait for research to progress, something they have no agency over, aside from adding themselves to less than half a percent of data gathered by the survey.
The very nature of the realisation of of 1 and 2 is enough to draw even the most sane of people to despair. Number 3 may give them a sense of purpose and perhaps direction, but it would be hard for anybody but the most optimistic person to really feel their contribution will ‘push things over the edge’ to make ground. The plodding first response to a new user’s heartfelt pleas for hope and help is the plodding, ‘Do the survey and wait.’ They cry out for help in their own individual ways but the response is the same as all those who have come before them - ‘do the survey and wait’.
This dataset shows a few things which aren’t made clear to sufferers new and old.
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Wellbutrin/Bupropion seems to only have a negative impact on a little more than 10% of users. So there’s a 80-90% chance that you won’t feel worse after having taken it. And amongst those that DO feel worse, only very few of that percentage have lasting impairment to their baseline after cessation.
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More than 60% have reported mild to substantial improvements to their condition by taking it. Sometimes the effects are indeed short-lived, but many times they seem to be ongoing. But even if the effects only last for a few months, a few weeks or even a few days, it in of itself can give people confidence that there are biochemical ways of relieving this nightmarishly complex condition, albeit temporarily. It shows that they aren’t completely doomed.
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It shows that the rest of the people either experience no positive or negative effect, or some sides improve whilst others don’t (usually the sexual ones are the most stubborn, but crippling depression can often be relieved to some extent).
I’d like to see your analysis. I find this data rather encouraging. An efficacy of 60%, 50% or even 30% is something encouraging in the stubborn world of PFS.
Naturally we don’t know with many of the users. Often they just disappeared. I tried my best tracing their posts to see if they’d later remark that they discontinued treatment or that they got worse. I don’t know if I captured every user’s accounts accurately but I tried to.
Perhaps it’s worth spending some time re-evaluating your prior assessment. It seems to be that many of the users continued to take the drug and disappeared, or never mentioned that the stopped taking it. The fact that users report even mild benefits is something heartening and shouldn’t be dismissed in my opinion. I wouldn’t be surprised if efficacy rates even match those of the general population treating MDD, but I don’t have figures to back that claim up.
If you consider libido to be the defining attribute of PFS, then sure. But many on here are struggling to cope. Many are drawn to taking their own lives. I don’t see how a reported ‘improvement in ability to cope’ should be discounted as being a positive, as you claim.
What would really increase the power of this dataset, and I’ve brought it up in the past, is to correlate the survey responses with their responses to treatments such as the one discussed here. Thereby we could look for correlates between symptoms and treatment efficacy. When I’ve mentioned this prior, I was initially told that it cannot be done because it’s ‘too complicated’, and then I was told a little later ‘it infringes on user privacy’. I’m not pretending that there aren’t obstacles to this form of analysis, but I hope that the community can see its potential worth.
In all, I think this dataset, although not perfect, (and your criticisms I largely agree with) shows that there may well be treatments worth recommending to sufferers rather than adopting the ‘it’s entirely untreatable at the moment and if you try you’ll probably make yourself worse’ response.
What the community needs to do is perform a statistically-sound risk-analysis on treatments such as Wellbutrin, TRT, in an as objective a manner as possible. It won’t be perfect, but I feel it’s our obligation to do so.
I understand the hesitancy to accept that PFS is treatable, in some instances at least, and the implications it has with regards to community cohesion, research initiatives and general outside opinion of sufferers.
Given what the Baylor Study has shown us, with sufferers having thousands of dysregulated genes, it’s a near miracle that anything works for anybody, and we should be sussing out all of the connections we possibly can.
But as far as I see, if it could save even one life it would be worth all the effort and risk.