The Concept of ME/CFS, 2024, Edwards

Very apt . It's certainly not living as most people know it . It's like a death process without dying .

 

Yup. So certain, and so meaningless it could just as well go under a piece about hair loss in Chat magazine.

 

Perhaps it was beneficial to leave it as a preprint, as the peer reviews keep coming; a new one was added yesterday:

https://www.qeios.com/read/CTL03F

Good to see the continued interest from all over the world.

 

An interesting review, but like others it misses the main point of the article which was not to explore possible causes. My reading is that the value of the article is establishing what we don’t know and arguing that treatment/management should be based on responding to the presenting symptoms, not on the physician’s pet theory.

 

The more reviews I read, the more I am left with the conclusion that either I have not understood the article at all or that the majority of reviewers and presumably a large part of readers, have not understood the essence of the piece at all.

I don't know whether the piece itself can make things clearer. However, my understanding of the piece is naturally driven by my understanding of ME/CFS which in turn is also driven by conversations occurring on S4ME, conversations most readers will be unaware of. It is plausible that my understanding of the piece would be a very different one if I had spent my time in an echo-chamber where certain beliefs about the stress, immune, and nervous systems or other pet theories, dominate the discussion. I do think it is necessary to continue these discussions outside of S4ME, be it with colleagues, in journals or at workshops and conferences. Perhaps comments to reviews can help facilitate such a discussion, but I am somewhat sceptical about the amount of people able to listen carefully enough.

I don’t know whether it accomplishes much and it probably doesn't, but perhaps it may indeed be valuable if the piece was published somewhere else as well to help facilitate the necessary discourse.

 

I think this may be pessimistic. Those that have commented are by and large people with pet theories, outside of the mainstream ME/CFS research community, who have indeed missed the whole point. They illustrate the conceptual confusion I was exploring very nicely. But if these people have found the article I hope it is a reasonable assumption that others with a wider-angle view may have seen it too. The fact that few if any mainstream voices have commented may simply reflect general agreement. (It may also reflect a wariness about getting involved in politically charged debate.)

 

I've only just now read Jonathan's piece on Quieos, I think it's fantastic. Super clear and concise.
A breath of fresh air.
Thanks Jonathan.
Regarding the reviews - is there any value in me (as a layperson) adding a review on Queios?

 

Positive comments can do no harm!
I think to do a review you have to register with Qeios with some sort of institutional address but I am not sure what that involves.

 

I tried to register previously to see if there was a way to follow articles & reviews. Registration by email seems limited to institutional addresses (my personal one didn't work; my .ac.uk one did). However it looks like you can also sign up with an ORCID profile, which is free and presumably wouldn't require an institutional email address.

 

A general rule of thumb in any community is that 1% of people contribute original things, about 10% contribute a bit here and there, while the rest are completely passive. So for every comment you can assume about 100 people have at least read the thing.

Whether those 99 have understood the thing they have read, as opposed to the 1s who clearly show they have either not properly read or misinterpreted what it says, is impossible to say because most will never say a word about it.

But this is all very similar to pre-maturity disciplines. You can read as much speculative nonsense from otherwise extremely smart people discussing physics, the nature of the universe and how it works, from before the 18th century and none of it comes anywhere close to reality, almost all the discussions are bogged down with individual models and hypotheses and most of the general discussion is wasted over trivialities that make zero difference, since they are missing the key pieces.

As it turns out, and this is something far too few people understand, experts are no better than the average person at predicting scientific facts before they are well-understood. Here they actually might be worse, because of extreme biases and assumptions backed by decades of tradition. Otherwise for the most part they are mostly all simply monologuing about their preferred version, none of which comes anywhere close to reality for the most part.

One big difference here, however, is that atoms, cells, minerals, mathematics and the rest of what makes up science cannot speak, has no life experience or intelligence it can share. It's actually ironic that health is the most common thing people will poo-pooh personal experience away, even when experts are completely wrong about it, even though it's the only expert knowledge that can be experienced, and so is the only exception where non-expert knowledge applies, where we or someone like Jonathan can jump ahead of all other experts in terms of knowledge simply by listening to the experience of those who live it.

No one is a cloud, or an engine, or an orbital insertion path, whereas we are living and experiencing an illness where medicine has made zero progress understanding the disease process, making it the only context in which it actually applies that we know far more than experts, until they make the first breakthrough and their expertise actually applies.

 

Yes, I’ve not tried to register with Qeios but I have an ORCID ID which did not require an institutional email address.

 

That reminded me of an article from decades ago, about some old artefact with markings on it that experts couldn't make sense of. It was apparently a child who realised you had to look at it edge-on to see it. Knowledge and theory can really get in the way of curiosity.

 

Upon that pointer I venture to say:

also the intense demand to acknowledge possible causes is like a river fed by several streams. There is urgent despair, clinical frustration, bereavement, exploration and business interest, all maybe cutting corners, maybe

Maybe skipping the next step which may be to outline the knowledge gap but insist in interim upon feasible symptomatic management and treatment, as surmised.

So a separate question arose which can be separated so as not to divert from other priorities eg the priority of urgent need (to manage illness specifically)

So I would like to see the questions raised separated from this article rather than taking issue with it, contrasting it, or commenting on its possible shortfall

I guess all the questions raised amount to: is an exploration for cause supposed to precede the exploration for management of illness and risks (incl with available treatments) ?

How else manage and treat an unknown cause ?

If subsets show more certain evidence of causes and markers, that calls for a different paper on which ALL these streams could well confer with eachother and collaborate on and then publish on www.qeios.com as a companion piece

The companion piece (or contemporary piece if not meeting this authors criteria) might also develop the immediate demand for specified managment options targeting cause and using markers)

Then both rivers can obtain a weighted authority without any jostle or precedence maybe flooding the plain

Without taking a view, I am disappointed that the other river understandably did not engage with and help develop the specification of nutritional interventions so very desperately required in many cases, and for so long.

I think first they badly needed recognition of the discoveries they specify, maybe. If so it brings this matter down to the consistency of industry standards for evidence. Which again is another matter to be specified but not by snagging the crucial evolution of this matter

I was not sure if this was the same Snell who commented on the qeios paper discussed

So I recently copied reference with the the link where I found it, but now the Cochrane link redirects to https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome

>>>>> stakeholder-engagement-high-profile-reviews-pilot/author shows me an author team.

So i worked out that this Workwell paper (here declared under Davenport's Declaration of Interest) must have been from a page about the independent advisory group for that update

So I searched Cochrane for Stakeholder Engagement to see what lesser subjects emtsailed, correction: i meant subjects of less or no controversialisation

- and found 2 pertinent reminders that the urgent management specs required include for the "hospital at home" and the technology portals as applied in IBD eg to monitor for calprotectin

As a shortcut here are the stakeholder-engaged Cochrane links in case useful, while i find where i buried the links I had in mind to directly inform people in dire need of home-hospital and remote-tech (as evolved a long way from the virtual clinics for outpatient appts)

Given this qeios paper such links might be studied at regional and national levels too, allowing ME / CFS in some case to be grsnted access to such interventions, including once studied the nice.bnf lists of approved medical feeds

https://www.cochrane.org/CD014765/EPOC_multiple-perceptions-about-implementing-hospital-home

https://www.cochrane.org/CD014821/GUT_use-technology-remote-care-inflammatory-bowel-disease

Curiosity did not yet kill this cat though I did stick my head in a lions's mouth a few times

 

I forgot to ask can anyone publish a paper on Qeios, not that I could but others might and not only those several others with more to add on on this matter of urgent provision

I think maybe this needs a correction as i saw in this paper an eminently practical approach, not a theoretical approach, and also not a commentary.

This commentator also referred to a commentary as in

and I took that to mean the commentary of this and the other commentators with that of the protesting article of the 1st reaction.

I had to re-read this comment to notice they were referring to this paper. Maybe there is a type of paper technically known as commentary, and if so maybe this paper is of that tpye, but I'd rather not type it so

Plainly the several commentators need to ALL join up with eachother in order to beneficially as intended "join up all the pieces of the disperse evidence about the physiology"

typo or no typo - disperse or diverse or dispersed evidence ?