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 too ill due to other commitments to properly attend to this yet, but see it as important to get a concept right.

but these points note the terms mightn't help with those who miss the issue of it being about a ‘ratchet’ illness where treating us badly and ignoring these things we flag all-together makes us deteriorate and 'reduces our envelope further' (stealing words of coroner's verdict simply because not up to coming up with something more specific right now).

and to the wrong ears who are behaviourist could be used (interpreted by ears that are listening with a certain mode) 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 (with no 'comeback' from the treatment immediately offered), 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 that getting such help is the START of a careful, long journey which will be made longer and us more ill (from a lower base point) the more that we are put through that deteriorates us, so avoiding anything that can be avoided like those exertion/sensory adjustments - because we don’t have some helpful treatment other than time in restful circumstances giving us a chance.

 

Yes, huge thanks once again to Jonathan and everyone's comments.

I'm late & once again apologies for not being able to read through the thread.

Managed to read the paper's first couple of paragraphs until the Snakes and Ladders comparison in the most recent version posted here.

I think that's still from an older version?

In the current version it's edited into:

"The ME/CFS acronym, rather than trying to find perfect words, reflects a desire for a pragmatic clinical term that both recognises and transcends various historical medical views, but also builds on the insights of people with ME/CFS who, importantly, have made major contributions to research and the level of scientific rigour."

So that's fine now I think.

Edit: This is still in the current version:

"‘Complex’ tends to tacitly imply unspecified psychological factors, which just obscures things (and was not intended).'"

Or something like:

Even if not intended, 'complex’ tends to tacitly imply unspecified psychological factors which just confuses things.



I still have a few comments content-wise. Hope to be able to post them by Thursday -- if that still makes sense then?

 

Isn't it "disorders of gut-brain interaction"?

Trivial typographic things:
line beginning "Carruthers, B.M., Jain,A.K., ..." - missing spaces ; line beginning "Carruthers, B..M, van de Sande, M.I., De Meirleir, K.L., Klimas, N.G., Broderick,G" - extraneous dots, missing spaces

 

Fwiw I often use the phrase ‘unpleasant symptoms’ and prefer it to just ‘symptoms’.
I think I get what is meant by ‘organising’ thoughts and it’s probably close enough but maybe there’s a better word… although I can’t find it at the moment!

 

It's definitely axis some of the time, but why should I care?
Maybe getting it wrong adds to the niminisation* (sic)?

*Referring to a critic's comment about Byron's Francesca of Rimini.

 

Thanks to all for the comments.
I think the last version deals with some at least.

 

I know what you mean!

I can't help thinking what fun it must be to work with , I think someone has used the term MEEP language but it's a whole new world sometimes of 'wait for it .. I'll get there one day..I can feel I'll put my finger on it, nope I'm done for now' vs the specificity we feel we need due to the circumstances/target audience etc when talking about 'illness phenomena' that is like being stuck in some sort of permanent irony.

 

It doesn't carry that connotation in medicine. Eg in ICU patients might be "slowly weaned" or "on slow wean" from invasive mechanical ventilation.

 

I’ve listened to the latest version. Thank you again @Jonathan Edwards

This is good, very honest and clear on what we don’t know. It covers a lot, but is also stripped back to focus on a few important areas. Let’s hope it is seen by the right people and has the desired effect.

Not necessarily the intended audience but I will be sharing it with friends/family and likely my MP as part of an ongoing attempt to educate him into action.

 

OK guys, Qeios have reminded me that I need an abstract.
So I have added one. I have also re-checked the full stops in the references!
Final comments on the abstract welcome.
Hopefully it can be uploaded by Friday.

 

@Jonathan Edwards - looks very good to me, just one grammatical nit-pick: 'The concept of ME/CFS (notionally standing for myalgic encephalomyelitis/chronic fatigue syndrome), has evolved...' shouldn't have a comma after the bracket.