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This twitter thread started off with the Cochrane withdrawal, but turns into a discussion about PACE. And since several here are blocked by prof. Sharpe, thought it might be of interest. I had to split it up in three posts in order to show all the tweets:

The Swedish public service television company with a news segment about ME patient Sture. He was rejected social security, but after a long battle finally won. Not able to provide google translation, but it is a sympathetic article. SVT: Kroniskt trötte Sture får rätt i Förvaltningsrätten efter...

New blog post from initiator Nina E. Steinkopf. This time with an overview of surveys and research supporting patients' claims that exercise makes us worse. She asks whether it really is the patients' task to gather this research, shouldn't it be the Competence Service's job? Forskning som...

I only had a peek at that debate. Did some of them claim that Larun didn't even have a chance to reply to the criticism before the decision of a temporary withdrawal was made?

That's a good point. And it was stated clearly that it was the quality of the applications that counted in the end, not patient's opinions. I was trying to watch today's seminar from an objective point of view, and I think all in all this was a good seminar and left the impression that the...

Here's a chance to give Carol Monaghan a thumbs up and/or an appreciative comment.

I followed most of the streaming. To my surprise one of the user representatives for The Norwegian Research Council's project on ME research was an ME patient who claims to have recovered by graded exercise therapy and Lightning Process. She spoke at today's seminar and was the only (ex)patient...

Where's My Apology, BMJ Open? This morning I sent the following e-mail to Dr Fiona Godlee, the editor-in-chief of The BMJ and editorial director of BMJ. I cc’d Professor Vincent Racaniello, the host of Virology Blog, and Carol Monaghan MP, who sits on the House of Commons Health and Technology...

A letter to the editor in a Norwegian news site about medicine. It says that the withdrawal from Cochrane is good news for the patients, and it's strange it didn't happen earlier. Thousands of patients have suffered under the misconception that graded exercise and CBT had some effect on ME...

They're going for the Reuters' version and links to a previous article from 2015 about the Swedish patient organisation "trying to stop research" by criticising a planned trial on CBT as treatment for ME.

Response from Valerie Eliot Smith My response to a statement from Aarhus University Hospital (Denmark) regarding a demonstration in New York City and a patient at the Hospital

I don't think this has been shared in this thread? A statement from Per Fink himself from Oct. 17th published by Aarhus University Hospital The department, the research and the treatments we have developed since 1999 have proven very successful and are well accepted both by most patients and...

From the letter: 2. Fast track publication (page 6) - It is not for us to comment on the editorial practices of a highly respected international journal. Noticed this recent exchange on twitter, and thought I'd just add them to this thread.

Svenska Dagbladet, one of Sweden's biggest newspapers has an article (paywalled) about an ME-patient who had to move in with her grown up son because she is refused social security due to her diagnosis. There are quite a few comments and a debate about ME (neurological condition vs...

Could someone please let me in on what "Spiked" is all about? Have seen it popped up repeatedly in the Twitter debate about the Cochrane withdrawal.