I’m paranoid about the results of the study too but let’s just see what it says first before speculating anymore.
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I spoke with Philip at the foundation today and he said realistically it could publish next month or within the next 3 months…So in other words by this summer…
Also it is in Two parts…nobody knows what they are exactly but is 2 and it is kept under tight wraps nobody knows what they found but as I said before it is rumored to be gene disturbances…
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gene disturbances are incurable ? Just curious…
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Nobody knows nothing about this…he has no clue…He said they were looking at sage maybe trying it out solo with a few doc’s help…
Nobody I knew even knew the study was in 2 parts so who knows when the second part would even publish…
He believes 200 thousand people have it and some famous people have it but won’t go public…So it’s hard to believe they cant raise the 300k for more studies yet…
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As usual, let’s wait for the study before predicting doom.
It just might be good news!
Why must we always focus on potentially negative outlooks?
I’m sure we’re all having a bad enough time without making ourselves feel worse.
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Spot on.
I wonder what the motivation for publishing the research in two parts is. Without attempting to be overly cynical, I certainly hope we don’t have to wait another 5+ years for the second part to be published, especially if it holds a critical aspect to the understanding of PFS.
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I sincerely look forward to this blowing the lid off of PFS denialism and the denial of post-drug illnesses in general. We need a good “fuck you” study to be published that we can show to our wonderful healthcare providers, who are all too willing to help us find psychological help for a physiological condition.
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Surely all the research and evidence uncovered to date should be sufficient to ‘blow the lid’?
We all wish that was so. The lid doesn’t appear to be blown, even after the Irwig, Melcagni, and Cauci studies.
I only say this because there are still PFS victims coming here stating that their doctors dismiss them.
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I’m not so sure that the Baylor Study will do anymore to change that…
When should I wait for baylor’s study? Does anyone know anything? I don’t think I can stand it anymore … I’m totally degenerating, I have two hormonal androgenic and estrogenic blocks. I practically have a disability that no longer allows me to do the things I want.
Ottima notizia!
Sounds to me like they still dont know what’s going on or what pfs is…
You spoken to them ?
He is aware - Awor was personally involved in designing the study. The findings of his research will be published after peer review and won’t be shared or discussed before that point. I’ll merge this post into the topic regarding this subject. I would suggest reading his recent literature review.
Hi @dj91,
The following is my opinion and I would not read anything more into what I say than is explicitly here. I do not know precise specifics and in that regard need to wait for the paper like everyone else, as what matters is what is published. That said, I do consider this the most important and promising PFS research undertaken. I expect, due to the science that underpins the reasoning for the study in the first place, the history of patient experiences and previous primary findings, that there is site specific persistent dysregulation of gene expression that varies between patients in terms of affected sites, number of genes and magnitude for reasons I’m working on contextually explaining. So I expect to see this in the site and cell lines they are looking at. Just as we see in the decade of this forum, there is a clear phenotypical variance in the symptoms and severity of the patients who have discussed their participation in the study. Having reviewed posts and subsequent letters from family, two patients in the study have since taken their own lives (that I’m aware of), while others were still quite able to get on with their lives and described a more functional impairment.
In terms of realistic expectation: I am personally cautiously optimistic of significant insight, with caveats. This is more complicated than many appreciate and a lot will depend on what they are able to conclude from the data in terms of mechanistic factors. It could be groundbreaking, it could be vague. It really depends how far they’ve gone. Sadly, I can’t pretend concerns are unreasonable regarding the potential for externally influential factors affecting the publication. More than one scientist has told me personally of a wider obstruction, and the fact of the matter is there’s money involved with this issue, as with many injustices. I will say that nothing I have heard points to a concern regarding that in this instance, however. I am pleased by a conclusive view in the literature review the chief researcher published.
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Cheers to the good guys!
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