Suggestion about the survey from a non-mod

Being guilty of not having completed the survey myself, I am just going to throw this out there.

I know how frustrating it is to be constantly reminded to do it in threads when the subject at hand is seemingly unrelated or taking the thread off-topic.

But I also know, after some very cordial exchanges with admins, how important the survey is to those who are dedicating their time to managing this site, as well as to our hopes of future research.

While I may have publicly doubted the link between survey numbers and research dollars, my own experience in the social sciences should have taught me that comprehensive survey data gets scientists’ juices flowing. And there is no such thing as too much data, only too little. Even if it isn’t enough to push a major institution into launching a study, a significant body of data could spur some maverick future Nobel prize winning researcher into digging into it and unearthing something critical.

I have certainly been guilty of choosing to dedicate my time to rereading threads I have read dozens of times before rather than doing it, so I am sure there must be more like me out there, too.

So maybe those of us who haven’t done it should just do it this weekend. Half on Saturday, half on Sunday. Or be an absolute warrior and tackle the beast in one go, I double doggy dare you. And by “this” weekend, I mean whenever the next weekend is at the moment you are reading this.

And then nobody needs to be frustrated any more, or at least not with each other, only with those cunts at M*rck.

Yes, cunts.

We will beat this, but we do so quicker by pulling together.




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@Greek I completed the survey already :wink:


I am part way through it now and going to push through to the end.

But I will say what I have said before. This survey fails to offer me the opportunity to give a full account of my experience because it focuses on “4 weeks before use”, “4 weeks before stopping use”, “3 months after stopping use” and “now”.

My major crash came 1 year after stopping use, which is 2 years ago, meaning there is nowhere for me to relay the very worst of this condition that I have experienced. Having mentioned this over a year ago I am sure, I am a bit disappointed to find that the survey has not been adapted and therefore will not be providing the fullest and most revealing results possible for researchers to try to understand this illness. My results will make me seem like a consistently mild case when I have actually lived through many catastrophic symptoms that I simply don’t have the opportunity to reflect.

Given how many other people who are here that took the drug years ago and may now be on some sort of upward trajectory like me, the survey prevents anyone in such a situation from being able to express their full experience, and there is no way at a later stage in a comments box that I am going to be able to remember all of the aspects of this illness that I have been questioned on.

Many thanks, edited you out of the list!

I take your point, but the questions aren’t set out that way accidentally, it’s written to provide data that can be used by and formatted for clinicians. The reservations that people have about the survey we are largely aware of, but short of asking many, many more questions this is a very, very good survey.

Well I have completed it, and tried to remember as much about the worst of my condition and include it in the text boxes where possible.

There should either be a question on “when have you experienced the worst symptoms” and then a column on all questions to be able to reflect them at that point in time, or there should be a “between three months after and the past for weeks” column.

I also feel there should be a free written section at the end to reflect anything else you want to say about the condition.

However, I have now done it and encourage everyone else who has not done so to do so.

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Thanks for completing it. I hope the others will follow your example and finally take the survey too which would help us a lot.

I would it is as much about getting funding as it is about inspiring scientists. In order to get funding, you need preliminary data. You need some objective evidence for people to invest their money in. Otherwise, you’re the same as any of the other 100x more people asking for money than there is money to give.

It is Friday, so if you haven’t done the survey and are reading this any time before Monday, do it right now, or tomorrow, or start it tomorrow and finish it the next day. Let’s all get it done and give the mods one less thing to chase us about and one less thing for some of us to get frustrated about.