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We have an electric bed that will sit you up or/and lift your feet up for that reason but it is quite good for sitting up in bed.

That seems to be pandering to the BPS people. I do think an occupational therapist can be useful in terms of providing adaptations and equipment to help make life easier.

I think it is up to her to be reasonably clear. Scientists should be somewhat pedantic about statements (which is why maths is used as a language for most science). I doubt if she actually stated a lie because she knew she was being recorded. But when accusing people extra care needs to be taken.

It looks very different from what I would expect but I can only see the summary

I think she is bright enough to know its not just patients but lots of academics. Also I think patients pushing back saying thats stigmatizing means she will know it is dodgy to label patients. Its like the racists who talk about 'those people'.

Having encountered Crawley as a doctor I wouldn't be surprised if she had threats. Its hard not to get very emotional when you feel your child is being badly treated and the authorities won't do anything.

If individuals could be identified then it would be PII and the FoI act wouldn't apply. In the PACE case they tried to argue that people could be identified but the tribunal didn't accept their argument. They are already identified as having ME - its obvious. These days fitbits are popular (ok...

Should I turn embedding of bbc links off?

To me a wrong result is where the research provides very little information where as a positive or negative result provides information. So I would say things like PACE and Smile are wrong results because the methodology is too poor to make conclusions. I was going to say its quite rare but I...

I'm just flicking through the pictures and one or two measures look interesting. @Jonathan Edwards I wonder if there is something interesting here for the biobank in that they are plotting fresh and frozen samples separately?

Any tips for people who can't swallow any type of tablet?

I think the epistemic injustice comments come from this paper from Charlotte Blease http://jme.bmj.com/content/early/2016/12/05/medethics-2016-103691

Unutmaz is on Twitter and seems worth following. He is making supportive comments around patient interaction.

e I don't think this has much interest for ME because they are talking about repairing Myelin. But I think it is a good example of drug re purposing. https://www.ucsf.edu/news/2017/10/408646/allergy-drug-improves-function-patients-chronic-injury-multiple-sclerosis

We're so glad to share that Unrest, Jennifer Brea's documentary film about ME, is coming to Watershed in Bristol! Sunday, OCTOBER 22, 15.10 Watershed 1 Canons Road Harbourside Bristol BS1 5TX https://www.watershed.co.uk/whatson/8541/unrest/ @Kina I couldn't find an events forum so posted...

The question I've always wondered about is does Nice give doctors cover for not talking about potential side effects of GET. If the guidelines are under review then perhaps that makes the approach of not talking about the potential to make people worse even less justifiable.

Although I think it would be good for Crawley to speak to an audience who really believe in open data. Although I'm not sure many scientist who claim to believe in open data really do.

I'm about to cancel the Guardian so I may tell them this is the final straw.

I will have a look for different addins over the weekend. I'm off work next week so can spend some time on set up things

I think we need to do our best to ensure that they get the right participation from patients rather than people who will rubber-stamp things.