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What I really meant was that even though they may not have seen the finally recorded dataset itself, there will surely have been many discussions amongst the researchers, and given the trial was fully unblinded, they will have had a strong sense during any such discussion of which way the wind...

Exactly @Lucibee. One of the first things I learnt in electronics (a good while ago), is that when using a voltmeter to measure a voltage, if you do not know what you are doing, the voltage you are measuring can be changed by the very action of connecting the voltmeter. Instead of the 10.2 volts...

"Tovey: Please see above. Many of the criticisms of the PACE study, including reported COI of the researchers, and changing outcome measures prior to analysis of the results, are not unique to this study." And the outcome changes may have been done prior to formal analysis, but if anyone...

Yes, for sure.

Will anyone get a chance to see the proposed survey questions before they go public? Because the design of the survey is crucial. The medical community really does not seem tuned in to what actually constitutes harms for PwME. Deterioriation is a vitally important form of harm, but I suspect has...

Although I see your point, they may also feel that the MEA and ME community are likely much better placed to gather reliable information. They also might feel, with some justification, the patient community would not trust something different. It does demonstrate a willingness to engage in...

Agreed. It actually comes across as rather out of touch and prejudiced - things that impede effective communication.

Surely it depends what the message is @Trish. I would have thought many of us joined S4ME in the hope of changing things. I do believe that it will come - we just have to keep chipping away. I think I'm right that you and I have been aware of the state of things for around the same time - since...

If the researchers are serious they should be able to factor this into their trial design, and have mitigation strategies.

I included in some of my comments that I felt a COI was not always cut and dried and would depend on individual circumstances. But that any decisions where a COI was considered non-blocking, then the information should be transparent and open. And that Cochrane themselves should take their own...

Whilst reading your post it occurred to me to say ... exactly what I then read further in your post :).

I think a lot of psychiatric conditions are about people having distorted self perceptions. So psychs live in a world where the way to cure their patients is to change their self perceptions. And the way they assess their patients' progress is to ask them questions which reveal their prevailing...

For anyone wanting additional options to select, I would think it essential to therefore also tick "Other" and follow it up with a brief survey-length answer as requested in the survey. If that is not done then the results will be skewed.

Or design cars, or aircraft, or power tools, or anything ... oh dammit, they seem to think they can design trials :wtf:

Encouraging. A key issue is to ensure psychiatrists have no overbearing influence or oversight.

I think we need to work on how to convince people of the how flawed it is to combine subjective outcomes with unblinded trials. There is clearly a good deal of convincing still to do. I seem to recall @Jonathan Edwards saying some time back on PR that quite a few people took a lot of convincing...

Keen to see the full article, which is open access I see,

I think I heard a good while back that much of 'journalism' now is not the real thing anyway. Financial constraints provoking a race to the bottom in terms of professionalism and quality, relying mostly on 3rd party sources without validating what they are regurgitating. Thankfully there are...

I don't entirely agree, because outside of ME advocacy groups most people are not primed, and will be able to see Stuart Murdoch's comments about being positive simply for what they are, and read nothing more into it. He makes it very clear there is no cure, and that symptom management and...

Agree entirely. Being positive has many shades, often for the same person in different situations. Sometimes its a bl**dy hard grind and sheer pig-headed obstinacy; often it doesn't feel like being positive, but to others looking on it clearly is.