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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...

@adambeyoncelowe @Keela Too @saranbonser I'm assuming things like the necessity of home visits will be covered in the new NICE guidelines (I think they are mentioned in the current set).

I think that is an important question not just in these terms but more generally. The survey done by members here found that 2/3rd of patients surveyed said the DSQ questions on PEM didn't represent their experience. So it seems to be one of the things that could do with much more definition as...

Yes I think that is of interest. One of the additional things that would be interesting is further definition/description of symptoms along with information about severity and frequency (which is an issue with the ME diagnostic criteria). The one thing I notice is that PEM which we so often...

A lot do know what they are doing. They are optimizing publications and citation indexes as that is how they are measured.

I think adults need protection as well. Desperation for treatment can be a powerful force and we should worry about adults being too easily persuaded as well as parents of children.

Is he actually running a clinical trial? With a protocol and approval from an ethics committee. If not he is just planning to publish some case studies.

Just to make a further point questions that rule out PEM can also be very important.

I think its also important to understand good language to use to describe it. I worry that PEM may not be a meaningful term to many patients who don't spend time looking at ME information. The descriptions in the guidelines sound quite technical and I suspect are aimed at doctors rather than...