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Sorry I missed this last month - it's a great suggestion and I will follow it up through an org. Thank you!

Griff has proven to be an ally, asking questions last year in the Senate about the WHO reclassification issues.

Bit of a catch 22 if biobank funding leads to a reduction in the already tiny funding for ME research in Australia. Those hoping to use a potential biobank would need to build the cost recovery of biobank use into their grant applications. But there wouldn't be much grant money for them to apply...

I came across this today. It's Australian but refers to international issues around research misconduct: https://www.natureindex.com/news-blog/disagreement-over-the-legal-definition-of-misconduct

I haven't read all the responses, sorry. Currently only a week past an exhausting experience, so ironically I am still too deep in PEM for much reading. My contribution: I think it is essential that any measure stands up in terms of specificity. Many health conditions include fatigue that is...

I can recognise the difference in the two points, but perhaps they could be combined? So that transparency is described as applying to both the process and the choices made?

They're FOI "requests", not complaints, and they aren't fucking harassment. Sense About Science is looking more like another anti-patient group and less like clueless bystanders when they repeat this nonsense. Sense about Science has never been a clueless bystander.

It is the lack of responsiveness to patient concerns that is driving us nuts with Cochrane. For a speaker who would be of interest to patients or carers, I suggest that one speaker who would be relevant to us, but fully mainstream, not ME, would be Dr Louise Wiles from South Australia. Louise is...