For some reason, I can't read it on the MSN website - I just get thrown to the site's front page instead of the article (could be because I have so many script-blockers and suchlike), but the article seems to have been taken from the New York Observer, in case anyone else has problems seeing it...
That's pretty much what my husband said when I showed him the video - he said she came across as weird/disturbed and that she appeared delusional.
I've just noticed that YouTube have now removed all the comments and disabled any further comments. Great echo chamber.
So very hard to choose; in the end I went with Jennifer Brea for the reasons given by others above - she is the most likely to appeal to the mainstream public. The closest runners-up for me were Alem Matthees and David Tuller. But everyone on that list is a hero in their own way.
Yes, the link in this older post is still live: https://www.s4me.info/index.php?threads/esther-crawley-talk-at-tedxbristol-thurs-2nd-bristol-disrupting-your-view-of-me.286/page-6#post-11328 (And I, too, just happen to have a downloaded copy of it, because it wouldn't play in my browser back...
Thanks for this info! Have just ordered the test kit. It is free after you put in the code, plus $19.99 shipping if you're in the UK which converted to about £15 when I ordered. Having had ongoing sinus infection throughout my illness, am looking forward to seeing if anything interesting...
Excellent letter, really highlights the issues that needed to be raised re Crawley's lack of credibility such as her poor understanding of science and her misleading claims of 'harassment'. Hope you get a reasoned reply.
I went and tweeted my 2 cents worth too, FWIW. I think promoting the game will only annoy sufferers rather than evoke a good reception from them, and will perpetuate more wrong information to non-sufferers about how ME/CFS just = 'tired'.
Sigh. As usual, it's all about 'tiredness'. I wish that folks who feel the urge to write about, talk about, or make games about this condition would take the time to educate themselves on what the symptoms really are, and not spread misinformation.
And, that screen in the game that says...
And interestingly, it's been re-titled "New Recognition for Chronic Fatigue Syndrome" rather than the original title "New Recognition for Chronic Fatigue". Looks like criticisms of the original title have been taken on board, which is nice to see! The graphic used at the top of a person with...
Yes, that was basically my take on it too. I agree with the sentiment that everyone should feel valued whatever their disability. But the statement that some disabled people don't want to be cured was really jarring, and I suspect that will be extrapolated in healthy/non-disabled readers'...
Strange article - makes some good points but, for me at least, impossible to relate to the sentiment that some disabled people don't want to get better. Such as:
Statements like that are unfortunately fuel for the BPS crowd's belief that for those of us who don't get better, it's because we...
And if forcing ever-increasing exercise onto patients who have exertion intolerance as their main defining symptom isn't regulated (which I'm guessing isn't regulated at all, never mind heavily), it jolly well should be!
Terrible article, as regards ME. Sympathetic to the lady, but extremely unrealistic view of ME. She clearly doesn't have ME.
ETA: Added 'as regards ME' to 'Terrible article', which I should have done in the first place, oops, sorry.
Why are they called Sense About Science? Nonsense About Non-Science would be more apropos.
Why is all this rubbish just reiterated uncritically and without any sort of reality check? Does it never, ever occur to these people that if there are so many complaints about fraud and misconduct...
Wow, amazing that one man can be responsible for so much idiocy over such a long period of time. Thank you for all your hard work on putting together this compilation, it really is compulsive trainwreck reading matter. It would be funny if it wasn't so harmful.
Super-ironic considering that...
So, Bristol U admits that a cease and desist letter was never sent, thereby exposing Crawley in a lie - but, they contacted Tuller's employers at senior level about him behind his back?? Charming.
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