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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...

We should remember that the AntiVax thing was certainly encouraged by a paper in the Lancet (Wakefields paper) which was defended by Horton who has also been key in publishing and defending the PACE trial.

It does under to FoI act.

We should remember that the Bristol Vice Chancellor has already been involved in putting pressure on Berkley to keep David Tuller quite. So they should be passing this issue to their senate as the governing body rather than someone who reports to the vice chancellor.

Often there may already be issues between the school and parents over attendance when a child is ill. We had real problems with a school who were not sympathetic. If a parent were to receive such a request with an undiagnosed child they may well feel forced to attend as the school could already...

The concern would be that the HRA have effectively authorized people to do dodgy trials as 'service evaluations' particularly for non pharma trials - but trials could be done with existing drugs this way!.

I've quickly skimmed the report and my thought is this is academics protecting academics and institutions but I suspect behind the scenes people know it is wrong and note of this gets taken. The British establishment can end up working this way and it is not a good way to operate.

Really they should be raising concerns about ethical permissions to the HRA at the highest level and getting them to clarify points such as is it acceptable to pilot service and do a service evaluation without ethical approval and what guidance would they give to ensure that this isn't a...

I wonder if there is an investigation via an FoI worth doing to see the times that the 'pilot clinical service' was running (i.e. was it only set up from the perceptive of a research project). To see who funded the pilot service (i.e. was it normal clinical funding or was it via a separate route...