The Concept of ME/CFS

[Kitty]

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.

 

[Sasha]

Thanks @Sasha.
Am I allowed to assume that you are the ultimate proof reader and I can post it online!!?

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

 

[bobbler]

It can be used as a slight against us as well.

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.

 

[Sasha]

@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!

 

[Jonathan Edwards]

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.

 

[Sasha]

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.

 

[Hutan]

Very nice, thank you Jonathan.
Some comments:

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

I still don't understand how the ME/CFS acronym transcends the insights of people with ME/CFS.

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

Second use of 'obscures', and I'm not sure that it is the best word to use here. You could just say ''Complex' tends to tacitly imply unspecified psychological factors, which was not intended'.

Firstly, people with ME/CFS have persistent unpleasant and disabling symptoms

Unpleasant symptoms in ME/CFS include nausea, orthostatic intolerance, pain, (hence ‘malaise’) and sensitivity to environmental stimuli such as light, sound, physical contact and odours. There is also difficulty organising thought processes, which for many is central to their disability.

I and others have found the 'unpleasant' a bit jarring, as the symptoms can be a good deal worse than unpleasant. Also, how many symptoms are not unpleasant? Not many I think. I think 'unpleasant' could just be deleted, without any loss of sense. I agree with others that malaise, the feeling of being unwell, is different to nausea, OI and pain, and is not the sum total of those. Just to confuse matters, I rarely feel nauseous.

I don't think that 'difficulty organising thought processes' is quite right. I don't have problems organising my thought processes, apart from when I have more global problems with my thought processes. Organising thought processes seems specific and almost implies a mechanism. I think it might be better to just say 'difficulty with cognition' or 'difficulty with cognitive processes'.

There is no mention of muscle weakness and fatiguability in this initial listing of symptoms. I think it is an important aspect of the illness and potentially an important clue. I think we saw it in the intramural study, people with ME/CFS could not sustain muscle use in the way that the healthy controls could. I think there was a hand grip study that found it too. It's not related to fitness, as some days the weakness and rapid fatiguability is there, and other days it is not. There is mention of fatiguability later in the report, but it does not make it clear that fatiguability is a characteristic of ME/CFS.

Others have had parenteral and enteral feeding support and been weaned off (Baxter et al., 2021).

I really don't like 'weaned off'. It makes it sound as though the person has needed help to give up something that they wanted, and implies something of moving the person towards an adult state. I know it wasn't meant that way, but it does have connotations. You could just say 'Others have had parenteral and enteral feeding support and later have been able to return to oral feeding.'

Claims of benefit from psychotherapy are hard to square with there being no evidence for any reduction in the prevalence of the illness and people are still dying of avoidable dehydration and starvation.

This would be better slightly reworded:
"... with there being no evidence for any reduction in the prevalence of the illness and with people still dying of avoidable dehydration and starvation."

The advantage of ME/CFS is that it is overtly a pragmatic compromise term that implies an illness with a reasonably well-established epidemiology that we understand nothing about and for precisely that reason need to turn our attention to.

I don't think there is a well-established epidemiology - we desperately need better data. Also, not knowing about the illness is not the only or even the best reason for people to turn their attention to it. It is also quite common, and life-disrupting. I'd write that sentence as
" ...that implies a reasonably well-delineated and relatively common debilitating illness that we understand very little about. For precisely that reason, we need to turn our attention to it."

The time course of deterioration following exertion is not explained by any currently understood type of mechanism.

I don't think you need 'type of'

Until then there is a need to get as clear as possible the clinical concept we are trying to explain, so that research studies have the very best chance of finding clues to what is going on.

I think that sentence reads better as
"Until then, there is a need to make the clinical concept as clear as possible so that research studies have the very best chance of finding clues to the underlying pathology."

Thanks again for your effort on this.

 

[bobbler]

Very nice, thank you Jonathan.
Some comments:


I still don't understand how the ME/CFS acronym transcends the insights of people with ME/CFS.



Second use of 'obscures', and I'm not sure that it is the best word to use here. You could just say ''Complex' tends to tacitly imply unspecified psychological factors, which was not intended'.




I and others have found the 'unpleasant' a bit jarring, as the symptoms can be a good deal worse than unpleasant. Also, how many symptoms are not unpleasant? Not many I think. I think 'unpleasant' could just be deleted, without any loss of sense. I agree with others that malaise, the feeling of being unwell, is different to nausea, OI and pain, and is not the sum total of those. Just to confuse matters, I rarely feel nauseous.

I don't think that 'difficulty organising thought processes' is quite right. I don't have problems organising my thought processes, apart from when I have more global problems with my thought processes. Organising thought processes seems specific and almost implies a mechanism. I think it might be better to just say 'difficulty with cognition' or 'difficulty with cognitive processes'.

There is no mention of muscle weakness and fatiguability in this initial listing of symptoms. I think it is an important aspect of the illness and potentially an important clue. I think we saw it in the intramural study, people with ME/CFS could not sustain muscle use in the way that the healthy controls could. I think there was a hand grip study that found it too. It's not related to fitness, as some days the weakness and rapid fatiguability is there, and other days it is not. There is mention of fatiguability later in the report, but it does not make it clear that fatiguability is a characteristic of ME/CFS.



I really don't like 'weaned off'. It makes it sound as though the person has needed help to give up something that they wanted, and implies something of moving the person towards an adult state. I know it wasn't meant that way, but it does have connotations. You could just say 'Others have had parenteral and enteral feeding support and later have been able to return to oral feeding.'



This would be better slightly reworded:
"... with there being no evidence for any reduction in the prevalence of the illness and with people still dying of avoidable dehydration and starvation."



I don't think there is a well-established epidemiology - we desperately need better data. Also, not knowing about the illness is not the only or even the best reason for people to turn their attention to it. It is also quite common, and life-disrupting. I'd write that sentence as
" ...that implies a reasonably well-delineated and relatively common debilitating illness that we understand very little about. For precisely that reason, we need to turn our attention to it."


I don't think you need 'type of'



I think that sentence reads better as
"Until then, there is a need to make the clinical concept as clear as possible so that research studies have the very best chance of finding clues to the underlying pathology."

Thanks again for your effort on 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.

 

[MSEsperanza]

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 still don't understand how the ME/CFS acronym transcends the insights of people with ME/CFS.

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).'"

Second use of 'obscures', and I'm not sure that it is the best word to use here. You could just say ''Complex' tends to tacitly imply unspecified psychological factors, which 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?

 

[Nightsong]

diseases of gut-brain axis

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

 

[hotblack]

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!

 

[Jonathan Edwards]

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

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.

 

[Jonathan Edwards]

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

 

[bobbler]

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!

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.

 

[SNT Gatchaman]

I really don't like 'weaned off'. It makes it sound as though the person has needed help to give up something that they wanted, and implies something of moving the person towards an adult state.

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

 

[Hutan]

Maybe so, but I think when the topic is assisted nutrition in ME/CFS, the risk of people seeing that connotation is there, is worth avoiding and can be easily avoided.

I mean, we are talking about a syndrome that is seen to sit in the FND category, for which a published diagnostic indicator was the person having a stuffed toy. Some people see ME/CFS as a means to avoid adult responsibilities.

Weaning has the same idea as GET, as incremental changes to get to normal function. It can fit in a challenge paradigm. The difference with invasive mechanical ventilation is that breathing is not generally seen as something a person might refrain from voluntarily. But some people may think that not taking in food orally is a choice the person with severe ME/CFS is making, and that they need help to gradually overcome this faulty thinking.

 

[hotblack]

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.

 

[Jonathan Edwards]

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.

 

[Sasha]

@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.

 

[Trish]

The abstract is an excellent distillation of your key points.

I'm a bit puzzled by the bit underlined:
a symptom-based syndrome characterized by post-exertional malaise, orthostatic intolerance, and an unpredictable, fluctuating time course

a fluctuating time course of what?