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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 knew because I sent a letter to them documenting that I had become ill as a result of the trial, and the nurse who came to visit me documented that I...

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 they are doing is awful and they are in the wrong, what happened has affected me a lot too. I’ve developed a PTSD of sorts and have become more and...

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. Incidentally has anyone heard of the Curable app? Don’t download it! It’s an app based on “pain science” by “medical professionals” which aims to fix...

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 truly do not understand why it was allowed to happen and still is, under the headline of MUS and PPS. And even chronic pain/fibromyalgia (I went to a...

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 get better - to say it to myself as well.

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 into here as I’ve detailed it elsewhere, I wanted to say one other thing. Dr Bolognese, when you apply to be a patient, asks you to fill in a long...

: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 me?! I really would like to know what happened to the other participants in the trial.

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 can see what kind of brainwashing I was put through. I can’t believe i ticked / wrote those things. Yes I will share the documents.(have shared by...

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 trial - we spoke briefly at the start of the PRINCE trial. I hope all is well with you anyway. I'm just getting in touch with you now as I am inviting...

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 gained“. Nothing will be lost? I’m in a very bad mood now Another thing is this trial absolutely was graded exercise by the back door. It said CBT only...

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 with a covering letter but I was so unwell at the time I couldn’t do it myself. I contacted David Tuller about it on Facebook - he didn’t get back to me...

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 that I did that day that made me really happy - and rate how good/well that made me feel. And that was like a measure of how well I was doing or...

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 “flare” had got better. Unfortunately, my “flare” has lasted nearly 3 years and counting.

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 could walk for up to 5 minutes, was going to sewing classes during weekends and sitting up for 4-5 hours. At the end of the trial, I was no longer...

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 her answers -Do you think that adults and children with Chronic Fatigue Syndrome or ME (CFS/ME) should have access to specialist NHS services for...

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 prominent symptoms people were focusing on. Maybe because it’s the one that lots of people with M.E have? In any case I am glad that in my case I am now ok...

Unfortunately, yes. I do think some people will latch onto it. Infact I remember a Twitter post from someone, saying something like “trying to remember all the times I’ve had neck pain and thinking I could have CCI”, or something to that affect. And I remember a prominent member of our community...