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I've tried to summarize the information in this thread in a blog post: https://mecfsskeptic.wordpress.com/2019/10/01/turning-a-blind-eye-to-blinding/ I'll repost it here, as that makes it easier to quote and comment. Turning a blind eye to blinding Blinding, sometimes called masking, is the...

Thanks for the suggestion. The sentence has become quite complicated though. What about : "The XMRV-saga and the more recent enthusiasm about Rituximab are but two examples of how easily things can go wrong when the uncertainty of preliminary findings is overlooked." Yes that, but there's...

I still have some trouble with this sentence. What about: .... "when promising but preliminary findings are misinterpreted?" I think I will leave out this sentence, as it might be a barrier for others to support the statement. I used it to explain things and make my arguments more concrete, but...

I would say well done by Nina E. Steinkopf, although I do not know all the details of this. I admit that I haven't read up with everything on the Lightning process, for the simple reason that I thought this was so self-evidently absurd, it would not be taken seriously. The fact that Per...

Thanks for the suggestions @Ravn. I don't know how @Medfeb sees it, but I suspect our views on this matter might simply be too different. So I rather not try to reconcile them by making major changes to the text. The view that the opinion of a group of ME experts is good evidence, can be...

I don't use the term scientific as a synonym for good, valid or reliable. I use it to refer to the scientific method involving experimenting, testing and replication. So expert opinion is not scientific evidence in my view. The idea behind the scientific method was to no longer believe what...

There's a study by Jason which uses patient samples from Newcastle and Norway and online patients, where approximately a quarter (23, 8%) was housebound. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ But I don't think that's where the IOM report got the 25% figure from. I suspect it's a...

I've inserted this version ("..assumed to be correct") in the text. Thanks for your help.

Thanks for the suggestion. This does give the impression that it's desperate patients that form the problem, while the issue that I want to raise is more about a lack of caution or skepticism towards biomedical research findings in the ME/CFS community. What about: "The XMRV-saga and the...

Ok. But the things I propose do not forbid sharing or giving information about expert advise, as long as the evidence behind it is not overstated and properly framed. So it should be presented as something that ME/CFS experts do, based on their intuition and experience, not something that is...

Apparently, the term compassionate care refers to medical and emotional care for patients with terminal diseases. So that may not be the right term either. Back to effective care

Wow! Thanks to everyone who made this possible! Advocacy seems to be growing in Germany. I hope the situation will improve there.

:thumbup: I've inserted it in the text.

I agree it's not specific enough to describe a treatment in a scientific paper, where the term should probably not be used in a general sense without specifying on which domains the treatment is effective. But I think it's different here because we're describing a goal, not a study or evidence...

To clarify: this text presented above is not a proposal to form an official S4ME response (it would be weird for one organization to say what principles and values another organisation should have). It's something I would like to be sent to ME Action staff and their board to consider now that...

Thanks for the suggestions Ravn! I'll go with effective care, let me know if you prefer another term. I'll indicate changes in the text in red. I do prefer skeptical over critical though, as it focuses more on questioning and doubting things rather than criticizing them. 'First do no harm'...

Thanks for your response. Could you give an example of something ME Action might want to do that would be in conflict with the principles I propose? Suppose that an updated version of the IACFS/ME primer for clinicians comes out that contains the expert treatment advise you described. I think...

Although I think you make valuable points, I would prefer separating them. Changing MEpedia's editorial policy and determining what directors cannot say in their personal capacity are more concrete points; they are less about defining core values or principles and more about applying them in a...

It seems that I got the word 'factfulness' from the late Hans Rosling, who defined it as "The stress-reducing habit of only carrying opinions for which you have strong supporting facts." Hope that it works. It's difficult to come up with a term that describes a commitment to sticking to facts...

I've worked out a proposal. Be mindful that this is just a first draft, it might need some changes. The idea is to work on this with others here on this thread and when we think we have a final version, we could make a new thread for it and ask other ME advocates if they would like to support...