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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.

New blog post from Nina Steinkopf, the initiator of this petition. She is asking patients and carers to tell their stories about what the consequences are from having a Competence Service with a biopsychosocial approach to ME. What are the experiences among patients on meetings with doctors...

The Norwegian ME Association with official, good and important inputs for the state budget 2019. 1. Continue the support to the research team at Haukeland university hospital 2. Establish ambulant services for housebound ME patients 3. Earmark allocations for research into clinical treatments...

National Standards for Public Involvement in Research: missing the forest for the trees Abstract Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there...

Good thing screen shots were taken. She's deleted some of her tweets, as the one James Coyne is answering to.

#MEAction's response to the statement from Aarhus University Hospital Join the fight against stigma and pseudoscience in New York When people sent letters of protest, they were issued a boilerplate response that stated that ME was not the focus of Fink’s talks, and that no presentation was...

5 000 signatures :party::emoji_boom::woot: and keep them coming!

Statement from Aarhus University Hospital Danish research on functional disorders causes a stir in the USA The Danish consultant and professor, Per Fink, PhD, DMSc, has been invited to Columbia University in New York to share his knowledge on functional disorders at the conference "Healing...

Extrastiftelsen is a big foundation for volunteer work. On Oct. 24th 09.00 - 12.15 they invite to a seminar about user involvement in priority within research. As many of you remember, the Research Council of Norway invited among others ME patients to have their say in how an allocation on 30...