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What bothers me is that Hilda was searching online for candidates and then appointing them rather than running an open (and perferably transparant) process. If we compare this to say how the PSP recruited people by setting up an initial small committee (including the CMRC PAG representatives and...

But to be clear that is a priority choice to prioritize pandemic response things. [edit] Cochrane is also an organization with many involved so I assume additional resources could have been found to help.

A blind review of trials could be interesting where the intervention is unknown to those looking at the results. But it doesn't work as the intervention sets expectations (like telling people if they ignore symptoms they will get better) and in turn this biases results

So what I don't understand is if there is such a role in a review process. They are not designing trials but reviewing what was done and aggregating results.

Not all some don't manage to teach participants to answer questions better!

Shouldn't an early stage of any review be to look at the reliability of the evidence in each study found. Looking at the strength of controls and how they may interact with the measurement system (i.e. looking for things like do the different trial arms control for the right things; would...

Given it is gas I suspect doing so would be illegal in the UK. Unlike handling devices with gas those doing reviews and giving medical advice don't need to demonstrate competence.

My belief is there wasn't a formal process just Hilda talking with a few people thinking they might help or I don't like them. But this is why being really transparent about approach and process is so important. And yes if the skills required and process for recruitment was published prior to...

They have not just failed people with ME they have demonstrated a lack of competance in backing a review that was not up to any standard and demonstrated they don't care about accuracy by leaving that review on the books for years dispite knowing the problems. Its a systemic issue with Cochrane...

So perhaps you can describe the recruitment process a bit more? Prior to interviewing what did the skills and marking matrix look like? Who else was on the interview panel, what additional checks were done (for example prior to interviewing people I always try to read some papers or other...

But you got to choose the organizations and that organizations would nominate people and why it was a good idea. There seems to be no systematic process behind choices or if there is nothing is being communicated. So by saying its the Hilda club I mean things like these choices which as far as I...

So basically this process is about the Hilda club - people Hilda has met and worked with over a logner time. Its not about patient participation and partnership with patients.

That is a good point but the 'process' seems to be to appoint someone to appoint a group. Where is the analysis of the skills needed for the different roles and a strong process for recruitment to reduce the biases of one given individual that should be part of such a programme.

If people don't listen and act on valid criticism then things need repeating. Lets face it Cochrane ignored the issues with the current review for many years and patients had to keep campaigning. Lets face it when a bunch of people such as those involved in Cochrane have ingrained attitudes and...

With healthcare I find the notion of consumer advocacy quite strange. The very work consumer hints at a expected role of patients to take what they are given and as people who need help in getting it. It doesn't feel like empowering and educating patients who can then express optinions and be...

In general what I observe is Cochrane has very weak processes to avoid bias (or ensure competance) in its reviews. With the current review they failed to respond is issues raised by patients and then issues raised by the editor. So instead they start an entirely new process saying they will take...

You would also need to ensure the sham education wasn't harmful which could mean it ends up not saying much and setting very different expectations but I've not dug into the material. But it doesn't suggest that he has a huge experience with well run trials.

I was looking for trials he may have been involved in and here is a stats plan that he was involved in https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5537460/pdf/main.pdf They seem to be using a pain intensity scale as a primary outcome (along with an overly complex stats model). The intervention...

You are missing the point. The way things were phrased suggests a particular view point comming from groups of medics who attack ME patients. Simply changing the language later doesn't change this. But ultimately the question that needs to be answered is why have this split? What is the...

I think we need to be clear that there are those in the medical and scientific community who have purposely tires do stigmatize patients to avoid criticism. That is, to my mind, where a lot of the stigma within the academic community comes from. And its not just odd comments it is press...