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I'm not sure what progression you are referring to but historically, evidence based medicine was an attempt to overcome 'medicine by authority' with which it has met with some success. However there are some significant failings in EBM thinking and it was these that science based medicine was...

Respecting a point of view doesn't mean unconditionally agreeing with it. The best arguments are between people who hold diverging views but who respect both the other person and the fact that their view is sincerely held. Of course some views are toxic and those who hold them command no respect...

AfME has four PwME on a ten member Board of Trustees. It is very simple rule, if we want people to respect us, we have to respect them and if PwME want the various organisations that represent us to work together, then co-operation is only going to happen where there is mutual respect. That...

That makes the recent complaint even more dubious, and probably pointless, unless the intention was simply to get some bad press coverage for AfME. Perhaps a quick explainer might help non UKers understand some of the background - being a Registered Charity is the only legal condition for...

Absolutely this. There's much discussion here https://www.s4me.info/threads/blog-beyond-the-nice-guideline-mecomms©-and-the-case-for-a-public-inquiry.21332/ that is based around the need for UK organisations to co-operate; there is no chance of co-operation if organisations and the patients...

The Charity is a legal entity and the Trustees in place at any one time are legally the face of that entity and are responsible in Law for all current and past actions of the Charity, there are various ways that Trustees can be protected as individuals but they have to act according to their...

As a measure of how complex these questions are, it was long considered that far from being a support for the immune system, high levels of testosterone were an immuno-suppressive, if that were true, and if immune response did play a role in ME/CFS then one would expect male patients to see...

How do you make sense of a chaotic system ? How do you make sense when comparing separate chaotic systems ? 5 dimensional multi directional Jenga anyone ? Age and aging in ME/CFS is (yet another) unexplored area and it's certainly reasonable to postulate that maturing in the young, or...

I have very poor peripheral attention which means I'm always mashing up my hands, and in the garden that means infected cuts which then take ages to heal. I'm also forever taking off heavier gloves because there's some fiddly thing I can't manage with them on, and then of course I either forget...

Or whether any of these abnormalities are in anyway other than merely correlational with the causal pathology of ME/CFS ! Having a reading that is abnormal, i.e 'out of the range' that has previously been determined as 'normal' in a disease free population, is not in itself a measure of...

That really needs some qualification: "Humans have a variable capacity to apprehend the context sensitivity of words and apply such apprehension relative to cultural, social, political, financial and other interests, prejudices and advantages." Yes in most (all ?) human languages context...

I am not a lawyer :) .. but I think the legal position can be summed up fairly simply. In this case the Council got itself confused between treating the two disabled Councillors as a) members of a protected class (disabled people) and b) two people who as members of a protected class have...

I don't know the particular local politics but my guess is that this is a "road to hell/good intentions" kinda thing, where some legal advice has been issued and no one has had the sense to question how that advice relates to the real world. The horror is that anyone in a leadership role would...

Disabled councillors blocked from accessibility vote — because they are disabled This may seem obviously ridiculous, but this argument has been made about patients as study authors. It is pernicious and has to be challenged whenever it rears its septic head...

I was going to add this to the 'Beyond NICE Guidelines' thread but it likely has wider relevance: https://www.theguardian.com/society/2021/jul/14/proposed-reforms-to-nhs-institutionalise-cronyism-claims-labour This seems especially relevant: "Under the complex reforms, more than 200 clinical...

Your post. Yes ;) . One slight disagreement, re: costs. Legislation* provides for those contributing to an Inquiry to be re-imbursed including for legal representation, however costs are at the discretion of the Inquiry panel and you are quite right that there would almost certainly be ongoing...

Main article is paywalled but this abstract is worthy just for the phrase: "synthetic certainties" https://pubmed.ncbi.nlm.nih.gov/34240651/ Travis Proulx, Richard D. Morey First Published July 9, 2021; pp. 671–681 PMID: 34240651 DOI: 10.1177/17456916211017098 Abstract More than 40...

I think the start would be to state precisely what objectives are being sought. From that we get potentially different ways of doing things, but also how those ways may conflict. This is what VES wrote: "A new and robust strategy is required, aimed at addressing the historical damage caused...

The question I think has to be somewhat more complex because what is being asked for is a Public Relations effort and a Public Inquiry, so that the terms of one necessarily define the other and vice versa. We might begin by asking what is the expected outcome of these symbiotic efforts and from...

I agree pretty much with everything in your post excepting about Cochrane - we really need to wait until Hilda Bastian has completed her report - unsurprisingly delayed because of her extremely valuable running commentary on COVID vaccines...