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I feel left out. It's just like when I was always one of the last to be picked for a side in netball lessons :( But for the fact I'm not a tweeter.

Somebody should ask Sharpe whether he is aware that his press articles increase the stigma me/cfs patients face.

'And with one bound.. he was free!' If there's anything useful in this paper it won't be this sentence.

I've read it. It's contentious and offensive because that's exactly what he's paid for. The ME section is followed by his thoughts on Brexit and concludes with a short section on millenial snowflake 'awful people' who don't know how to work. This is the phrase that pulls all the themes...

Perhaps it would be a good idea to encourage jounalists/editors to watch Voices from the Shadows.

My family member (not a pwME) records her NHS appointments and has found it very useful. She also asks for test results and scans etc to be emailed to her. I'm not aware of her having had any problems (in fact it was because she had her own x-ray copies that she was able to push past...

Perhaps, but most probably not. I don't think it helps to suggest abusive people can't on occasion have an ME/CFS diagnosis. We are made up of all kinds of people. It's up to the judgement of people on twitter, but surely they can challenge or report the behaviour. edit changed one word for...

S4ME.info - this thread- is currently 4th on that search result

Another approach would be to respond to tweets taking the article at face value, straightforwardly pointing out that there are legitimate issues with the quality of the science and linking to perhaps Hilda Bastiens blog, the JHP Pace edition, Tuller's work... edit grammar

I misread the title every time.

I agree about requesting corrections, but I also know that any corrections made will be tucked away where no one much will see them except those who are looking hard.

:) I think your English is very good @inox , and I admire you because I also feel insecure posting with my foggy brain and English is my first language :laugh:. I appreciate all the contributions in this thread, yours and those of others. They not only help me understand a little of what is...

The life-changing magic of sharing your data... or @JohnTheJack will see you at the tribunal ;)

I've just read the decision (only skimmed through the discussion) - well done! :balloons::balloons: The idea that a 'motivated intruder' could publicly identify children who participated in the trial from the data wasn't accepted by the judge. I think that's helpful for other FOI requests for...

Thank you for your work on this @Trish.

The Cochrane review is such a stumbling block. The delay and the begrudging half-hearted measures taken by Cochrane are a disgrace and enable people like Fink. I find it hard to believe that he doesn't know he is being disingenuous.

No no you didn't sound insensitive at all, I'm sorry if I gave you that impression from my comment it was unintentional :hug:. My thought was also that we just don't know, and that it takes time for the authorities to fully investigate and reach a conclusion.

Perhaps that's under investigation still. This is all very sad.

For some reason I'm not surprised that the CFQ is:rolleyes: This looks interesting, will read later, thanks for posting.

Maya Dusenbery's list of questions is on point. (Deleted some questions, need to re read when rested)