Baylor's not published. Research in Italy is coming to an end. What are your plans next?

In fact, I have one question.

Where are you going to move on?

Your ideas?

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As a teacher of the academy, I am preparing for the new semester in March. And I exercise hard everyday for my body and goal. Living with PFS is hard, but I firmly believe that if I try hard to live every day, I will have a good day someday.

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i wish you only the best. Hope one day we can forget this nightmare…

I will be continuing to support Awor and Axolotl, arguably the best connected authorities on PFS.

I wish more of the community would grasp hold of this concept. There are many reasons to be optimistic for the future if we band together.

To be clear, if you had to pick a team to be on, the one that is already connected to the scientific community, is publishing data and articles in scientific journals is the one to be on. I implore everyone to get onboard here. We’re looking for help and enthusiasm, all are welcome.

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Can you tell how you know it will not be published later?

I guarantee you 100%. The study will not be published.

If only those who do not seem to grasp this concept had a way of explaining why without their posts being deleted. Then perhaps you would be able to convince them.

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True! So many years are gone now, and every year you will see stuff like, oh the Baylor study gets released this year, and nothing happens, also there are no updated on what is really going on, complete silence. Why? Because something smells wrong here, thats why…

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Ok, but how do you know for sure? Are you in close contact with Dr. Kera, the foundation or the medical journal?

100% guarantee.

So, tell me and all others how do you know for 100%.

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Can anybody who is involved in the study or Foundation confirm this? @axolotl?

It’s very simple, the forum is provided under certain conditions, those conditions are based on things like civility and furthering the cause of the forum. When people post in ways that are detrimental to those things interventions have to be made.

Nobody enjoys it.

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I support Awor and Axolotl as well as the centralized leadership of this forum that restricts freedom of speech until we get the ball rolling

no one likes the fact that the study is delayed and we are working with limited resources with options that take time for things to materialize.

either contribute and stop making posts like OP(or provide proof of what youre claiming, which has not been done)

or

figure out a way to fund what YOU think is the best route to solving PFS

im going with the first option

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If we are talking about the gene expression analysis - I think it will be published eventually. The real question is when and also what it will say. We’ve been through this before.

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These are not the only conditions. One over-riding condition is that one cannot question, disagree with or discuss admin decisions in the forum, which effectively means that any admin decision can be arbitrary and not based on any condition/rule.

P.S. Oh, I missed that part: “furthering the cause of the forum” is a wonderfully objective rule.

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That’s right,my team are starting to work on finding a solution. We hope for a good result.

It will help us all.

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Good luck, seriously

Guys, unfortunately you cannot and should not expect an update on Baylor or any other research study until it is published. The reason is that it compromises the research process. If the study were dead, the Foundation or researchers would update everybody as you would expect them to.

What is being suggested in this thread is just completely unsupported misinformation. It is also false that the Italian research is coming to an end.

The best thing to do, whether the study is going to be published or not, is to move on to other projects and efforts that will help. There’s no use in trying to worry about what is already far out of your hands.

I get that people are frustrated because this project has been delayed an absurd amount of time. But in the meantime, the community has made a lot of progress in other areas. Better to focus on the good.

Asking every two days when Baylor is going to be published is super annoying. It’s like being on a really long road trip and asking if we are there yet. We will get there when we get there. Make the most of your time while we’re still waiting.

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More transparency would calm the waters. Some, me included at times feel more could be shared about what is going on and what we can expect. Innocent people are losing their lives so its, understandiable that desperation brings out emotional responses. After all its one of the many symptoms of pfs. A live post board with strategies / projects and milestones would help mitigate sone of this

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