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.