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I wonder if there will be a problem that there will be a number of people who don't have an ME/CFS diagnosis but all the symptoms (perhaps in a mild form) and hence don't identify with the disease. There will be a number who are told they have depression who don't have an ME diagnosis etc So...

I think there has been mention of access to medical records which is another potential way to find patients. I don't know how medical records are organized (whether they are structured data or just text fields) but these days even if there are just free text there are some very good toolkits to...

I wonder if there is also an issue if there are too many people in the same families (i.e. if a high proportion of those included also have a member of the family with ME who is included how will that squew any genetic results). I think 20000 will be difficult but should be possible.

I think Jason has done a number of studies looking at different criteria and comparing them in terms of the numbers of patients covered as compared to cohorts from doctors with ME experience. I think he has also looked at the overall effectiveness of his depauls questionnaire which may be where...

Its probably important to look at the primary and secondary outcomes to get an idea if the trial is going to give any meaningful information, A form for the patient specific functionalscale us here http://www.tac.vic.gov.au/__data/assets/pdf_file/0020/27317/Patient-specific.pdf It looks like...

I wonder if this in the abstract suggests that one site was doubtful

The control through this service is quite limited in that they don't provide the data but they provide access to an online stats service so you can compute stats on the data (assuming SAS does what you want). So the researchers never get the data. I don't know if they restrict what can be done...

This is perhaps an interesting comment within the amendment So they are recruiting more children with co-morbid mood disorders than expected. Which could follow though to their overall result.

I think there is a lot unreported which I suspect will stay that way. I don't think they have reported the step test in actual figures but it did slip out in a graph (and that is a secondary outcome).

https://news.ki.se/detailed-map-of-immune-cells-in-human-blood This looks like a potentially interesting resource in that it provides an open source database on RNA expression profile in blood cells (I assume for comparison with other populations to help detect potential deviations from the...

Also the data release is very controlled in that if I understand correctly if you get the data you get access to it via an SAS cloud where you can do stats: I don't believe this is down to privacy of patients because if the data included any personal information then I would have thought they...

Whilst it is good to look at real world data about treatments which may not be as effective as in trials (or more) it is important that strong methodologies would apply. But it is concerning that they would suggest it as a replacement for trials. I would have thought this would mean releasing...

I'm not sure I understand your point. I assume you are suggesting that the blood samples could be used in an omics project to look at the areas of mechanism pointed to by the GWAS study? I think Stephen Holgate was being stronger than saying that it wouldn't close doors to other applications...

Having been to the meeting last week I think this is a really good opportunity to get some funding of a bio ME research project. I like the idea of the GWAS study which could give good indications as to mechanisms behind ME. To do that it need to be really well powered with large numbers of...

In the UK Sense About Science have backed PACE and the 'harassement' stories in a big way. But in the US they have done the opposite.

The correlation in that graph does look like it may be highly influenced by outliers. Although I was wondering given the number outside of the main cluster with low CRP which included both heathy and PwME could this be due to some other factor?

I think medical people should be encouraged to quote accuracy Precision and Recall scores (or F1) which give a better picture of what is happening in terms of false positives and true positives. https://towardsdatascience.com/accuracy-precision-recall-or-f1-331fb37c5cb9 There are also...

Some adults who are ill were ill as children as well.

It does in terms of replying to comments on observations and following them. The reported improvements may not be real but reports are still observable. People can report improvements for a variety of reasons. They can also attribute improvements to things that are happening as they improve...

Many patients report feeling better with the lightening process but should that be promoted in the same way? Observations are interesting but then a push to unproven diagnosis and potentially dangerous treatment shouldn't follow next. It should be investigation, gaining understanding and...