Hello, im an old member and i cant participate in the survey, any way to fix this?
Hi guys,
I see a lot of new people on here that have not filled out the survey.
Pls do.
Numbers are important, it’s not difficult and only takes a couple minutes.
It’s things like the survey that will put us on the map and eventually faster to a cure.
can I know the frequency of the various ssris and snris in the pssd questionnaires?
and can the pssd goal be raised to 150?
I have a question about the current results. When I click on the link (Current results can be found HERE ), I get an error.
“Oops! That page doesn’t exist or is private.”
How can I access the data? Thanks.
Hey @bigboss
Some survey results are live in the Survey Basics category. Let me know if you have any questions.
Thank you guys for your time and effort in making the survey actually happen…Can you plz tell us if and when you will be publishing the results?
Hey @silentpain89, thank you - it was a huge effort. We are definitely planning to publish reports on the data, and also hopefully use it to help us with patient selection for research participation, but we are extremely busy for the next months (hopefully) getting a lot of priority projects underway.
We also have technical issues we need to overcome before we can focus on transforming and analysing the data. We are updating our technical setup first - the servers all our systems run on - and this is turning out to be a longer process than we’d expected. Everything we do is self-funded and relies on volunteers giving their time around personal commitments and health problems (a few of us are very severely affected as you likely know).
I do apologise for the quiet on this that will probably last until later in the year regarding the results, but we’re working as hard as we can and have to prioritise where necessary.
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@axolotl, can this data be made freely available to allow other members of the community (or potentially other communities such as those with a penchant for data analysis) to analyse it themselves? May be cheaper than paying somebody and potentially faster than waiting for a single person who may be too unwell or preoccupied to fulfil the role.
hey @orthogs,
The raw data? No - If there’s a patient with SQL skills that could help to process the data, I would encourage them to message a staff member to discuss helping out, as we’ve requested before. There’s many reasons, but the main ones are: The data is not in a naturally workable form: ‘answer codes’ from matrices etc won’t make head or tail of sense without knowing the backend design of the survey, and results from validated surveys need to be processed segment by segment in line with their individual scoring instructions before analysis. Secondly, there’s no informed consent to open the data that way even if this was a technical possibility.
can I find out the statistics on serotonergic drugs (based on the number of reports of the various molecules)?
Once upon a time, it was strongly encouraged to take the post drug syndrome survey, but nowadays not much, if any, mention of it at all. Did the scientists say no more were needed? Did people get burned out on encouraging it? I actually did the survey before I started posting.
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We have more than enough data for what we need right now. The survey has proved very useful but it’s not necessary to keep gathering huge amounts of data.
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Hi @infinite, we haven’t released any of the findings publicly yet as we’ve been preoccupied with organising upcoming research and other projects. The survey data has been very useful for informing researchers of the complete clinical picture but at this stage we haven’t had a chance to put it in a digestible form for patients and the public.
@infinite, if it is the old charts and such that you are referring to, there is/was an apparent tech issue that lead to the graphics linked to the data becoming broken/unavailable last year. Since the site migration, it may take quite a bit of work to rebuild the infrastructure to the point of having this feature available again.
As @Sugarhouse has indicated, we haven’t really invested much into the survey recently now that it has been closed to participation and focus has shifted to the Kiel research
But if it was a survey taken my the public, why can’t they see what you gave researchers?
I agree it would be nice if the public could see anonymous aggregate data of the form that might have been provided to researchers in the past.
However, as axolotl already wrote, if reports of that kind are not readily available it would take someone with strong data analysis skills to create new ones. Such a person would also need to be trustworthy as I imagine the SQL database includes the respondents’ personal contact information.
Is everybody here donating monthly to pfs network ? Their research progressing. People should atelast donate 100-200 dollar a month. We have to gather more pfs victims and make donations. If we have 200 People donating 100 dollar a month we can fund new research every year
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Would you like to join our fundraising group on whats app?
I donate monthly between 200-500 dollars. Sometimes more. What we have to do is. Connect atleast 100 200 more pfs patients and make everyone donate 100 dollar a month atleast.
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