Not involved at all. They sent a letter to GP saying I was taking part in the trial. Then later on, when I dropped out of the trial, my GP only...
Thank you for saying so <3 :) Honestly though, although I am pointing the finger at them, and I can see objectively and always will see that what...
I think both of these scales should not be used at all. Even using those with the word “pain” instead of “symptoms” would cause immense harm....
I will have to think about what to do. Do you know when the trial results are due to be published? You are right that it was gaslighting and I...
Definitely. I did feel I have to give the “right” answers and I felt I had to please the therapist as well. And also I felt that was the way to...
Hi, as someone who, having read Jeff and jen’s story, made myself more ill by pursuing this avenue - at great personal distress, which I won’t go...
:D I agree, it would be really good to gather testimonials as there’s so many of us now.
I said my symptoms were better here. But they were actually worse. (And I dropped out of the trial a short time later). What was wrong with...
This is how I filled in a questionnaire at week 9. I think it’s ok to share this publicly as there is no identifying information...just so people...
There was a follow up of sorts, a few months after I dropped out. “I don't know if you remember me, but I'm the Research Worker on the PRINCE...
Quote from the booklet - “The best advice would be to try out this practical approach because nothing will be lost by trying but much may be...
I was trying to speak to someone who would submit my case report to someone at NICE. I think at some point someone asked me to send it to NICE...
I’m also really worried about how they recorded my data. I had to fill out a sheet every day and the main “record” was I had to focus on something...
Ok but how can you keep going when you literally cannot speak on the telephone anymore.
Just looked through my emails. I tried to drop out but instead they were telling me I should pause and get back to them in one months time when my...
Also one day I really, really want to sue the people who did this to me.
I was enrolled on this PRINCE secondary trial. I still have all my documents from that time. When I started the trial, I was in a wheelchair but...
My mum filled out that survey a week ago I think. We knew the point of contact for these surveys was someone related to PACE somehow. These were...
I just feel like we are going round in circles about this :) from my interactions and my own individual experience, neck pain is one of the...
Unfortunately, yes. I do think some people will latch onto it. Infact I remember a Twitter post from someone, saying something like “trying to...
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