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Thank you Ravn, also for your help in drafting the letter. Will add you to the list.

Still, haven't been able to read the full study, but I suspect that this will be one of the main points that should be raised. I've tried to mention it here: https://www.s4me.info/threads/david-tuller-trial-by-error-cochranes-report-on-courtneys-complaint.8555/#post-150341 Most of the data come...

Thanks, Strategist. I'll add it to the pdf-version if that's ok with you. [EDIT: It's not exactly clear but I think those words were from Dolors Montserrat, chair of the Committee on Petitions, who was being translated instantaneously from Spanish.]

The members of parliament asked the keep the petition open and I think this was accepted. So that probably means that people can still sign the petition.

I'm adding a pdf-version of the transcript here: (somehow a Word-document was too large to post here) [EDIT: this version had been updated to include the final comments which I forgot but Strategist has kindly transcribed - see posts below]

I was so impressed by the testimony of Evelien, that I immediately started working on a transcript. I've added some screenshots, to get an impression of the hearing. Her speech was very powerful - it had a calm and eloquent determination that I think should set the standard in our advocacy...

Ok thanks, Wilhelmina.

Haven't read the new review yet, but I'm rather optimistic by this statement from the new editor in Chief: This might be more important than what's in the updated review. It seems like they have decided to start all over again with this review. It's not made explicit but I suspect that this...

No problem, hope it's ok now and that I haven't misunderstood.

Probably. Thus far, I've only seen the abstract but it looks that there are still a lot of issues that will need to be analyzed and discussed.

Just a reminder: if some want to sign with their full name but prefer to keep that identity private or separated from their usual ME/CFS alias, they can contact me in PM and I'll add it to the list, so without you having to come forward with you full name on the forum or social media.

I've posted the final proposal in this thread, where others can sign and support it: https://www.s4me.info/threads/a-proposal-for-me-action-a-commitment-to-evidence-based-medicine.11561/

I forgot to mention that in this thread there's more information and discussion about the proposal and the text: https://www.s4me.info/threads/meaction-join-our-values-and-policy-initiative-september-2019.11449/page-3#post-205238 I've got a lot of help drafting the text from other S4ME forum...

That's a problem of misinterpretation of the evidence, not an argument against a commitment to high-quality evidence. I suspect you yourself would challenge these past mistakes by pointing out the quality wasn't as strong as the researchers presented it. You might argue that the authors didn't...

The term evidence-based medicine suggests that medical decisions should be based on evidence, not on trusting experts or prestigious journals. In the old days, medical guidelines could be written by experts in the field who used their experience and expertise to tell others what they should do...

A proposal for ME Action: a commitment to evidence-based medicine ME Action, a global movement fighting for appropriate care and effective treatment for patients with myalgic encephalomyelitis (ME), has initiated an initiative to specify its core values and principles. We are in admiration of...

I would like to send the following proposal to ME Action, as it is currently in the process of specifying its core values and principles. I’m inviting other ME/CFS advocates and members of ME/CFS community to co-sign the statement if they agree with the proposal. I prefer to make the statement...

Thank you.

Thanks @Annamaria , very helpful! Yeah, I think others have already made this point. One frequently used study is the one that used a sham asthma inhaler, published in the New England (Weshler et al., 2011) When I read up on the issue of blinding I was intrigued by the story about the royal...

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