The Concept of ME/CFS

Made a PDF with added spacing for folk who struggle with dense text.

Content is the same, but the text is left-justified in a san-serif typeface, and the heads and subheads are bolded.

 

Not quite, I am now turning my attention to the references section!

 

Yes anything that infers a ‘feeling’ rather than what it is which is that deterioration

the big issue we battle with is that we can only ‘prove’ someone wrong by yielding to what they force on us and it deteriorating us. Eventually it affects your ability to speak or move out the way to keep yourself safe even in emergency moments and it becomes a terrifying trap.

because by then you realise it doesn’t matter how much iller it makes you and how much it takes from you this ‘belief’ people are allowed to have that ‘we only think we feel and if we moved it would be better’ actually just gets worse the iller and more disabled we get. I don’t know whether it’s a human instinct in too many of how they emotionally react to and treat ‘the vulnerable’ and suspect that plays into it (as I see people’s contempt then I have to be on the receiving end of people justifying that contempt to me as also being ‘get fed up with doddery old blokes too’ and the like) - so that is very real snd something we are also having to deal with here, and easily given fodder.

 

@Jonathan Edwards - Done my best with the editing of the references in the absence of any style rules that I could find on Qeios's website - I've just gone for internal consistency, and when in doubt, I've checked the article webpages themselves for how some of the unusual refs should be cited.

Hope this is helpful!

 

I sent it off after going over it again and making a few more tweaks. I did look at the references but may have missed a few gaps. Fortunately the software usually handles that.

It can always be edited online.

 

Exciting! Let's hope it gets a lot of attention. Huge thanks again for all the work and insight that you've put into this.

 

I think in particular your first few points are really important

I’ve been to ill due to other commitments to properly attend to this

but these points miss the issue of it being about a ‘ratchet’ illness where treating us badly and ignoring these things we flag makes us deteriorate and reduces our envelope further.

and to the wrong ears who are behaviourist would be used like we just need a strong hand to force us to through a bit of unpleasantness we are being ninnies about and after all think of how many horrid things eg cancer patients have to endure whilst being cured/treated with hope of it helping.

The balance with me/cfs is different because yes we deserve support to survive but it needs to be aware that deterioration caused by it is deterioration so cherry-picking and doing things without adjustments etc isn’t them ‘just’ short-cutting then wondering why we are still bad and ‘won’t get better’. but is the START of a careful, long journey which will be made longer and us more ill the more that we are out through that deteriorates us - because we don’t have some helpful treatment other than time in restful circumstances giving us a chance.