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I think it's ridiculous that your tweet was being presented as a key example of abusive harassment, but at the same time, I do think it's a reminder that tweets like that are unlikely to be useful, and can be used to distract from the real problems with research like PACE. I've had comments of...

Thanks John. It is annoying that this view of the debate seems to so readily be accepted by so many in the UK. It's really unfair when we're being presented as engaging in a different debate to the one that we're actually working on. Amazing you managed to win despite this!

The 'biological/psychological' thing is largely just a distraction that descends into word games imo. Whether they class ME/CFS as 'biological' or 'psychological' doesn't affect the quality of research like PACE.

I get the impression people are talking at cross-purposes a bit. A lot of people here will ask 'is there any good evidence for that' with any claim being made by an authoritative source, regardless of the impact of the claim. A lot of the probing of research is more about intellectual curiosity...

There are some odd little misprepresentations in this piece, eg - describing Tuller as a former journalist, presenting Afflicated as "a docu-series about CFS/ME patients", claiming Racaniello was a "Berkeley colleague", etc. They all serve the interest of Kelland's narrative, but it's difficult...

What a relief that this is so weak. They really just have nothing of substance. It does again show how personalised criticism of researchers on social media is used to distract attention from substantive issues, but I don't see any way of us controlling every persons stray tweet. It would be...

She didn't say Parker, but "the Bath practitioner who is good". I didn't think that was Parker, who is based in London. It's still true that this claim about a "good" LP practitioner rather undermines her attempt to present herself as a rigorous sceptic surprised by her own results.

To me, it looks like Cochrane is trying to avoid embarrassing Larun and acknowledging that they got things wrong and that their processes failed. Courtney's complaint was so solid that they can't pretend he was wrong, but they certainly don't seem overly concerned that Larun was wrong in the...

Amazing. Great work. This process looks so nerve-racking to go through, and so much work too. So pleased it turned out well. I don't think I've even read the older the ICO judgement related to this. "School attendance in the previous week, collected as a percentage (10, 20, 40, 60, 80 and...

I thought Kennedy's response to this was a bit unhelpful, and unlikely to encourage the authors to look into PACE/CFS issues: https://journals.sagepub.com/doi/10.1177/0261018316673924?icid=int.sj-related-articles.citing-articles.8

Thanks for all your work Suzy. Very odd that they didn't even do a better job of providing brush off responses to the rejected proposals. They could have easily made it less obvious that they were failing to engage with the points made!

'How much can we let Larun get away with without them completely embarrassing us?!'

I wonder if something before then might be helpful for applying pressure to make sure that the problems with what has happened are properly acknowledged? I don't know, and I realise there are millions of things to respond to (the HRA letter, PACE 'FAQ's, etc), but reckon there's some value in a...

I think it's worth being cautious about suggesting the claims from White/Crawley, etc are BS, but the White way has presented this participant's decision to request her data was removed as if it were related to concern about FOI requests, or anything like that. That's spin. Tuller spoke to this...

The dates Robert Courtney submitted his comments: 1. Query re use of post-hoc unpublished outcome data: Scoring system for the Chalder fatigue scale, Wearden 2010. Robert Courtney 16th April 2016...

Yes. "I'm afraid the rules we've written for ourselves stop us doing the decent thing" is a rubbish excuse.

Sounds like they're continuing to try to allow this group of authors to assert power over us, despite quite clearly showing that they're not fit to do so. Terrible.

Probably, but as the criteria for them are different it's possible you'd happen to fit one more than the other just due to your particular symptom profile. It's worth looking at the criteria themselves and thinking about how you might fit different ones. It can be really confusing and difficult...

From what I remember the Vink paper looked at quite different issues to the ones raised by Courtney in his Cochrane comments. It could be valuable to have a collection of all the strongest criticism summarised in one place.

Sorry to hear about all your problems Hip. I'm no expert, but I think that National Insurance Contributions are paid if you are on Employment and Support Allowance, which is the benefit for those who are unable to work due to health problems. PIP is more designed to help provide support with...