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@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...

I think there are local support groups and various facebook groups that could be approached. Equally there are carer support groups in a lot of areas that could also be approached. A link to a directory of carers support groups https://www.carersuk.org/help-and-advice/get-support/local-support

Is that true? I didn't think that the Ethics committee were asked about data from children and young people?

I think often government research funding is built on a model where they will improve the state of the art based on a reasonable body of knowledge. Its unfortunate that there isn't this knowledge for ME and that government funding agencies don't have the sense to realize this and look for ways...

I don't think this is the right question. Can you differentiate someone with MS but diagnosed with ME or differentiate people with depression vs ME with the questionnaire values. It would be interesting to do some plots based on features from various diseases (and healthy controls) based on...

I believe that in the calculations for the sample size there is some room for error in terms of recruitment as well as for subgroups.

I think the idea is that there is GWAS data for healthy controls that can be used as a reference to see what is different. I believe that because DNA doesn't change then things like age matching doesn't matter.

I think there are genetic studies such as a GWAS study that can help identify potential disease pathways. Also omics studies such as metabolomics studies or transcriptomics studies that take a detailed look at the metabolic processes or which celular processes are active or dormant at a given...

Postal votes can be delivered to the polling station on the day. I suspect that if you are late deciding and sending them in then you can ring up one of the major political parties and get them to collect and deliver your vote on the day. Also if you don't have a postal vote then the parties...

Its an example I have heard others giving. I've not gone into detail the point for me is around implicit biases in data sets where an algorithm extracts information that it uses to predict which demonstrates a bias which reflects a correlation in the data (perhaps due to bias) but one that...

Are there violations of data retention polices if they have failed to keep copies of data in an accessible place. I assume records should be kept for each individual patient as well? Don't doctors have a duty to keep adequate medical records? I guess one of the issues is that there is a doctor...

The issue from an algorithmic perspective (or really an machine learning one) is that if you train on data which include these everyday biases then the algorithm picks up on them. For example in algorithms that sift for good CVs if they are trained on data of what a good CV is based on previous...

The point is that this is often not coding but rather it is due to machine learning where the bias is a result of the choice of training samples and can often be implicit. With Bias in ML algorithms sometimes people pull out two concerns 1) The data set selected just doesn't have samples from...