Nota- Did you get an appointment at Baylor? Those of us that can need to do our part. Can’t assume that others will do it for us.
i have applied and i have phoned them i will go in oktober… i cant understand why the foundation doesnt send an email to everyone… so simple and only a matter of half a day.
When in October? Maybe we can meet. My appointment is October 24th.
I spoke to the PFSF and there was no requirement for a mass email at this time. If they need assistance with recruitment they will let me know.
Any news about partipication?
bump
-participate in research guys!
Hey, does anyone have any further information about the progress of the studies/ recruitment progress…
Harvard is full but baylor still needs people.
It’s not a mystery to me why the Baylor study still needs people. The contacts there have been slacking off. I’m someone who has been suffering from pfs for years. I’ve been trying to set up an appointment to join the study at Baylor but have had problems. I emailed the contact given Satpathi, Shatabdi at(shatabdi.satpathi@bcm.edu) and got a response a week later. He told me to send my phone info and I would get a call from Dr Kurr’s office to set up an appointment. It’s been weeks since and I’ve received no call. I emailed Satpathi back to inquire and now his email as been disactivated and doesn’t exist anymore.
“Delivery has failed to these recipients or groups:
Satpathi, Shatabdi (shatabdi.satpathi@bcm.edu)
This user account is no longer available.”
This is terrible news. A lot of people have tried to participate and have been ignored. I really hope that the study is not discontinued. I have sent Mew a message. Please try again Westside if we figure out what’s going on.
I received this reply from Mew
Message:
The study is still going, they had a change in personel that is handling the inquiries so the email is no longer valid. The PFS Foundation could provide you with more updates, I don’t have all the details but I know they are still recruiting.
… i will email the pfs foundation and get back with an update.
The progression and handling of this study may be frustrating but we need to persist ourselves. We need these studies . It’s our best chance at recovery…
We need to start promoting again. A few months ago there was a concerted effort on this board by members like Jorbie, mcibofh, Len, THETIGERSHULL, pr123 and others. The Harvard study subsequently filled up. No doubt that the efforts of people on her contributed to that. Now we need another push to get the Baylor one filled.
The Harvard study did a much better job at coordination and response. They also did not charge, they paid participants. These factors made me and probably others the sense that they really cared about helping.
Awor says baylor study is more important though…
Am I right in assuming that my previous ssri usage before/during fin would make me ineligible for the studies? I’d love to participate but I realise these studies need to be water tight?
Also bump.
Best option would be to use the new study contact at Baylor. They will be able to advise.
Also… if Awor says that Baylor is the most important study… we really need to do everything in our power to get this study filled…
Bump.
Baylor Appointments 713-798-4001
If you have normal hormones, cant get any help from doctors, &/or have tried just about everything under the sun and haven’t been successful. You owe it to yourself and humanity to do the study. Even if it doesn’t save your skin it may eventually save someone else.