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With the criteria it is important that papers are clear in what they are studying (and which groups the research applies to). At times this information needs to be dug out from a paper rather than being obvious. It would also be good to have justifications for choosing different criteria in the...

If I understand correctly they have sent it for comment to those who attended the round table and i believe (but not sure) that they have been getting input from some of the charities in terms of the implementation statement.

I wasn't even thinking about a biomarker but something that could help test if there is evidence that something could be wrong in this area.

I'm not sure I understand what tubulin is doing but if something is going wrong in production (or log jam in tubulin servicing) as you put it then would there be any signals that could be measured. For example, are there particular proteins produced during the process that would change. Or...

There is something I don't get here. The effort is to raise 25 or 35k (not sure which) but this is to cover part time salary and an RA (or help cover) so has funding from another source been found for the rest of the money?

It is about how you sell your work and the importance of it. I remember one of the jokes about papers when I was doing my PhD was most were only ever read by the author and reviews. So its not about saying papers are not important but rather talking about the impact that a paper (or other...

I guess there is a question here about how you see yourself as a researcher and how you can be effective. An alternative view point (and I'm just putting this as something to think about and it is not a suggestion) would be to build expertise and reputation in the overall area of your work and...

So talk about what you think is valuable in terms of directions. What is are these types of research and how do they bring value in terms of knowedge that helps patients. I think we should see far more research than Decode. Personally I would like to see more omics research (and it has been...

Papers are all very good for an academic. But you are asking patients to fund your research I would suggest that rather than talking about the difficulty in publishing you could talk about the outcomes that the research shows and what the outcomes will publishing the papers will give patients...

I think it was Rachel and Richard who presented at the last CMRC conference about the new review (as it was then). That was 2 years ago. I think they got very strong pushback particularly for keeping the flawed review up.

I'm not surprised they are digging their heels in. There failures here highlight serious issues with the way the overall organization works, flaws in their processes and a lack of editorial control. It is easier for them to dig their heals in and pretend things are working than to admit to...

Its always good to give a date to a committee (with a goal). It may slip but that then becomes a concious decision and reasons and new proposed times need to be given. I also wonder if they could have done a quick evidence review before trying to define a protocol. If they did they may simply...

Cochrane had choices if Hilda was not able to progress this as she was doing other things that she considered a higher priority then they could have looked for someone else to take on the task of somebody to support Hilda doing it. If they wanted to delay they could have issued a schedule and...

They have been talking about doing a new review for over 2 years (I heard them talk at the CMRC conference just over 2 years ago) and they still have not come up with a protocol let alone a review. It does lead to questions as to why things are so slow and what the delay is. If Cochrane were...

I think it would be interesting if there were legal liabilities associated knowingly with publishing poor medical advice. It would probably lead to significant changes in the way Cochrane do things and Journals would need to take corrections seriously

I think it is realy important to say that there is a huge difference between describing a disease and picking out those features that discriminate the disease from other diseases. Simply documenting and listing all the possible symtoms can just lead to confusion (I suspect especially with ME as...

Should we assume that Cochrane have just given up with this review? They were promoting it at the last CMRC conference which is almost 2 years ago yet there seems to be no measureable progress. It doesn't look good for Cochrane in how they don't take patient harm or evidence seriously.

I wonder what validated means. From what I remember the CFQ was validated in terms of detecting ill people vs healthy people (I remember a paper with a RoC curve). But I don't think I have ever seen any work to validate that it measures change well which is how it is being used in a trial - and...

It sounds very much like current corporate speak.

Did you go?