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I sort-of love this sentence. (Because I regrettably have the same experience from another angle.) (I assume you meant "worse"?)

(Apologies that I'm sidetraking from the thread topic, but I found it important to address this.)

As the practise research project will be based on your priorities and values, then it makes sense that you would end up directing your team members to this place as well, as you value this place as a knowledge hub. E.g. if they have questions about particular matters that you think should be...

I'm glad I was helpful. :) (Extra because I struggle with language at the moment) I would find this scary too, at least at first; Things are changing, but ME patients are listened to so little that being involved in such a project as co-creator might feel like you're carrying the high stakes...

Yes, I find it encouraging that students are taught to do research with the people whose life/condition they are looking at as co-creators of legitimate knowledge in the way they describe. (Not cosmetic/box ticking, but actually about relevant needs and ethics etc.)

Dr. Grama is aware of what you bring to the table re. topics/knowledge (she trust your imput), asked you (she trusts your imput), gives great facilitation for you to be able to do it (low treshold, no-fail situation), and made the effort to lay it all out for you (which shows to me that after...

Continuing on this, I saw that Shortland et al actually mentioned Knudsen et al. They say: So it's not good that that same study is found at the basis of what they say about internet use by ME/CFS patients:

To be clear, I think the authors are well-meant as well (I edited a bit before your reply, I hope it's clearer now), it's just that that does not necessarily guarantee good research or a good publication, and it's the patients who will be harmed by it. That being said, I just read the...

I agree with your whole post, but I'm also finding it problematic that this is "the next phase" at all. When I read your post I thought: why did they not start with interviewing patients and getting a feel for the people and their situation, instead of treating ME patients like mute, alien...

The abstract reads like they are talking about wild ducks or something, creatures without a voice that you can only study from from what other people said about them. I had a question about the claim Apart from the obvious question -is it needed, and does the community think this is...

And keep going when you start to get even more money trouble than before you started buying the tickets - that's normal and actually a sign you are going to win the jackpot.

You think it might be found in a library? Doesn't the Wellcome Collection hold old coplies of the ME Association magazine? Edited to add: I know you have been looking for it before. I also seem to remember that RoyalFree1955 had access to old copies of the magazine at a library. Edited to...

Interesting to note as well: the ME Association says in their declaration to Companies House for the AoA-Nov'13: "NOTE - No alteration was made to the objects of the company" Unless I am mistaken that is odd, because they were amended? (And I reckoned that AoA-Nov'14 had corrected that...

Ah, I see, thanks! Well, that's one question less I guess....

As for the 2014 resolution and minutes, I'm not able to jump more into that (- so much ??). But there is a small difference between the resolution texts; the version in the new document, which has a date of 15 February 2016 for its redacted signage, is missing the last bit of text: "of the...

It should also be noted that the 2013 resolution text in the minutes does not match what was registered at Companies House before 25 November 2013. I don't know if this is common, but I reckon it's not, as you have to be really precise with this legal stuff to avoid messes and unclarity. That...

Regarding the 2013 minutes with the approval vote of AoA-Nov'13, it is noteworthy that they have an incomplete Article 28 mentioned to vote on. I suspect it might not really be a big deal, just something that happened in writing them up. The complete Article 28 was provided to the members to...

Indeed. Until now every piece of public documentation fit seamlessly and effortlessly; Now the ME Association posts these minutes, and, like their claims, they make things hella weird - particularly the 2014 minutes document. They raise a ton of additional questions apart from the obvious one...

I have to log off again, too sick. But re-stumbled upon: Companies Act 2006 and see also Acts 355, 356 and 358 together in post #1238 The Companies House holds a record of the written resolution.

O yes, all of this. (I meant that solely in response to the end date of the 10 year keeping requirement, which is counted from day of approved resolution.)