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Another weird paragraph from the discussion and following stuff from NICE - NICE do not ban treatments the make recommendations of things that have efficacy at a reasonable cost. So they are really trying to overstate things with their friends. Clearly this is more of a lobbying paper than a...

This feels like a strange claim to me - it is a long time since I read to lancet article but I don't remember them making any measurements of PEM that would allow them to make any such claims. I suspect it is some weird interpretation of the outcome data with people who fitted their version of...

Skimming the paper assessment times were anything from 12 weeks to 18 months! Doesn't than make a comparison dodgy? ALso very different treatments they talk about a couple of trials with higher intensity exercise and say something about differences in the result here: Is this saying if you...

My first question to them would be if they are looking for deteriation then why choose a scale that they use as a secondary outcome in studies rather than the ones that were used as primary outcomes - given their record is this careful outcome selection. Also (and perhaps this is as I've only...

And its worth pointing out that the step test secondary outcome from PACE has not been published

I think you did that is how I read it. Are they or is this an infinitely long process! The issues with the review have been obvious for many years and Cochrane have really dragged this process out and failed to correct flaws that are on the current review (that people are quoting and using)...

I'm sure you have noticed that one of the ways those pushing GET (and CBT or other psyhological treatments) have a narative that it is only a group of activist patients who oppose them and not the vast majority and then go on to dismiss activist patients (saying they don't want to be seen to...

Maybe that is why @Hilda Bastian hasn't prioritized this process and even quite a simple thing has taken well over a year whilst a dangerous review stays up.

I find this comment really offensive. You are blaiming a group of patients who are basically pointing out bad science for pointing out bad science and saying that is why no one wants to help. Yet there is a narative that has been created and permuated through the medical community started by...

Won't that disqualify her from being on the writing team as then she becomes an activist. I would have thought an open and transparent review of the protocol collecting comments from everyone would be a good approach - NICE can do that although it is a lot of work. They gave a non-response...

https://community.cochrane.org/organizational-info/people/central-executive-team/editorial-methods/projects/stakeholder-engagement-high-profile-reviews-pilot Looking at this I was shocked. In the role of the IAG it seems to be slipped in that the idea of the review is to revise the current...

We could take another example and if someone were to do a report on racism and said that they wanted one person who had campaigned against racism and one who hadn't - that wouldn't under normal circumstances be considered very dodgy.

It feels like it really is about politics rather than Cochrane doing the right thing or even taking patients seriously. Their dismissal of patient critics of bad science as 'activists' is a key point in demonstrating they don't want to take patients seriously. I would have thought it was a an...

Isn't the real issue here that Cochrane are one of those groups who have pushed 'evidence' which is of an insufficient standard. But its not just the inappropriate behaviour it is also those groups that are in a position of power and influence.

I think that brief already shows a high degree of tone policing from Cochrane - the use of the word activist is implicitly trying to devalue and that is what has happened over many years. Why for example, not use the phrase expert patients. As soon as someone gets involved in a patient...

I'm wondering what an excellent job would be. However good experts are you can't take studies that are simply not up to any sort of standard and make conclusions from them. Hence I assume an excellent job would be to have a protocol that no studies would meet? As I've said before I think any...

I hadn't realised that was you. It would be good to update the link to your blog as currently it doesn't point to the content.

It seems a shame that your blog on the CFQ isn't listed in the set of documents reviewed (maybe I missed it). But it would be very very bad if a protocol used the CFQ in any form of review!

Why does it matter what peoples views on a given intervention are. Surely the issue is the quality (or lack of quality) of the evidence base. What is needed is people who will ask deeper questions of the methodology and go past the basic apply this method to this thing questions. For example...

I have thought that questions about unexplained health issues prior to getting worse or taking more time off from work/school than normal may work to see if there is a gradual or initial mild onset.