Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

Another questionnaire...

 

This is consistent with testimonials from PACE participants, who said they felt they had to rate themselves as subjectively well even when they were deteriorating because the very premise of the treatment is that a positive attitude, even a fake one, is the path to recovery. Dropouts were unexplained and the reasons for dropping are still unpublished. Although I would only trust the participants' own words on this.

Looks like there's another round of FOI on the horizon! Might as well plan it in advance since Chalder is clearly using the same BS to get the results she wants as they did with PACE and SMILE. This school of thought will be studied for decades, as a case study of how research can completely derail and act in patients' worst interests.

You should probably withdraw consent, you have that right. Your data will likely be spun. If there are documents you can share and it's not a huge burden it would be great. This BS needs to be exposed.

 

The argument about being able to identify PACE participants is very telling. It's not about "outing" or harassing them, which is absurd, it's about getting their testimonials unfiltered. It would be very fruitful to be able to gather testimonials and input from participants in any of those trials. It would be especially great to have input from participants who dropped out, another can of worms that is kept under locks.

Something to consider. Given the huge number from any of PACE, SMILE, FINE, GETSET, this latest PRINCE turd or really any of the Orwellian acronyms, it shouldn't be too hard to get a decent number. In a way this churn of quantity with no quality could end up being their downfall. This project is clearly betting that repetition over a long period of time from numerous low-quality trials is good enough to make up for the complete lack of meaningful substance. Might as well turn that into a weakness.

(I can feel you sweating over this, quacks reading this)

 

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 private message).
@rvallee I can withdraw. But I thought it may be better to keep my data just on the off chance that they may actually put me down as someone who worsened on the trial. But as you say they might spin it. But how could they? I clearly said I was unwell.

 

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.

 

I agree, it would be really good to gather testimonials as there’s so many of us now.

 

Keeping records of how you answer the questionnaires is smart!

It is something I recommend all participants of clinical trials to do - also for your own perspective, to put any changes of your health in perspective, or to make sure you answer the same if your health hasn't changed.

 

It's Chalder. It's what she does, she has no honor. Unfortunately there are no rules to this, it's a weird gray zone with zero accountability. If you clearly state that you deteriorated, should be marked as such and this is the reason for you dropping out they can simply disagree and mark whatever they want, no one will fault them for it. The standard with these researchers has been well established already, it's how they always do things and they have been given the green light. Their nonsense theories don't allow for harm therefore they simply do not acknowledge any.

Really sorry you had to go through this. Gaslighting is psychological abuse and it should never have been allowed. Medicine is going through some weird growing pains lately and doing all sorts of unethical things like this.

 

OK this questionnaire is seriously weird and borderline cultist. The questions are extremely loaded. It has nothing whatsoever to do with science, even less with medicine.

Nothing's wrong with you (well, aside from the ruinous chronic disease thing obviously). This is psychological abuse by people in a position of authority.

 

It is the "Chronic Pain Acceptance Scale" with 'pain' altered to 'symptoms'. That might be why some of the questions don't make total sense, and why the questions are so loaded.

www dot psychologytools.com/assets/files/CPAQ.doc

The questions from the first post are from the Cognitive and Behavioural Responses Questionnaire, which attempts to measure 'fear avoidance', 'catastrophising', 'damage', 'embarrasment avoidance', 'symptom focusing', 'all or nothing behaviour', 'avoidance/resting behaviour'.

 

@lunarainbows - So sorry you're having to go through this. But I applaud your courage to go on public record with your experience. All too often it is the perpetrated-upon who feel embarrassed and ashamed - when it should be the perpetrators - and therefore keep quiet. Good on you for pointing the finger at 'them' and not at yourself. I hope you will be able to turn your bad experience into something positive, for others at least. For example if it can be used as evidence that serious harm can and does happen, that could help achieve that others in the future won't have to go through the same ordeal.

Generally speaking, re withdrawing consent: up to what point can this generally be done and what would be the consequences of doing so?

Say you withdrew during the study, presumably all data collected on you would have to be removed and any calculations already done would have to be redone without your data? How would you know your data has been completely removed?

Can you consent to participate on condition that you can read the study pre-publication, and withdraw if you feel you have been misrepresented? Not always easy to know of course but sometimes obvious, e.g. you reported harm but the study claims no harm occurred.

In the more likely scenario that you don't see the results until after publication, what are your options at that point? Would the journal print a correction, comment or letter from you?

 

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.

 

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 fibromyalgia clinic and they said similar to me as well). All across the country. Do other medical professionals not realise what’s happening? Are they ok with it? That’s what I keep asking myself.

Thank you for saying so. And you are right. Looking at the questions now, I can see just how terrible they are.

 

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 chronic pain using pain science.

essentially the curable app is along the same lines as that pain questionnaire. it’s like the placebo effect, focusing on “joy/positivity/gratitude”, but some very dodgy things in there too. One was a rubber band trick where they tell you to snap the rubber band across your wrist whenever you start catastrophising about your pain! People with chronic pain are treated very badly too (I was in tears after my fibromyalgia clinic appt at hospital 2).

 

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 more frightened. I also question myself constantly, if I feel ill I tell myself “stop catastrophising!” , and I constantly do tell myself “all you need to do is not focus on it.. not focus on it”, “stop being stupid, there’s nothing wrong with you”, things like that. I don’t know why I still do, but it’s like the things they said to me stayed with me.

And I heard it again when I went to the fibromyalgia clinic. And then I heard it again when I had to go into hospital A&E and was told to just do distraction techniques and go home. And then every article you see from Wesseley and Shape hammers it home.

I feel ashamed every single time I come into contact with anyone - whether it’s a friend, someone who knows me, a doctor. Like do they think I’m just focusing on symptoms? Like I don’t matter and I’m not worth existing? It affects me a lot and I do feel myself going downhill. But when I come onto these forums I realise again, it’s not just me, there’s lots of people in my boat and it does help. I feel so sad thinking that so many people have been hurt like this continually, the psychological abuse, the gaslighting.

 

So sorry to hear about how much you have suffered at the hands of those who should be helping!