The Concept of ME/CFS

Maat said:
I'm chiming in with another anecdote, from the early hours of this morning actually. I'm currently in prolonged PEM, worsened by the addition of activity in the last 2 weeks surrounding my discrimination complaint.

My carer cooked me a chicken casserole and pureed squash yesterday of which I eat a small portion yesterday lunchtime around 1 p.m. I felt oK afterwards but could not eat anything else for the rest of the day as I felt really full. I was awoken during during the early hours this morning around 3 a.m. with an urgent need to be sick. I won't go into the gory details but suffice to say for the next hour I unloaded the entire content of that digested meal. It was accompanied by profuse sweating (I looked like I had just come out of the shower, no exaggeration) and collapsed on the bathroom floor, completely unable to move. There I remained until a little before 10 am this morning, when I was able to crawl to the living room. Today I'm light and sound sensitive. The house is silent and there is a table lamp on that's all. Cognitively, I'm slow processing information but made two posts today.

Now, imagine I'm in hospital instead and the drs are exposing me to light and sound while trying to force food down me. Then imagine, that I've been sectioned on the grounds of malnutrition. When I complain through slurred speech (yes that's present today as well), and utter physical exhaustion that I cannot tolerate it; am I mentally incompetent in terms of making a decision?

This is a fluctuating illness akin to several others. You can only 'manage' a fluctuating illness by responding to its fluctuating nature. The fluctuation itself is not as a result of poor management.
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Update

I had exactly the same meal yesterday at the same time but about a quarter less of the previous portion. No sickness but slight nausea.

Today better tolerance to light and sound though still sensitive, still mostly bedbound.

Obviously this is my experience as an OAP.

When considering all these mostly young womens' experiences of hospital, one question which must also be addressed, in my opinion, is mysigony and the ME/CFS label itself being so attached to aberrant thoughts and behaviour.

The chicken casserole was from the Dr Claire Bailey fast 800 Recipe book, wife of Dr Michael Mosely, I responded to fluctuations. I did not force exposure to light and sound.
 
Kitty said:
The wired-but-tired PEM phenomenon might be amenable to investigation. Specially as it's visible on heart rate alone for some of us.
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I feel like I have a freight train going through my brain and can't fall asleep. This was the first 'alert' that something was very wrong when I returned to work after' recovering' from PVFS in 1992. I continued to work even though I lost the ability to fall asleep and everything else went downhill from there after 2 weeks. I became disabled.
 
Jonathan Edwards said:
It is an online journal set up by a UCL staff member with also Italian input. I use it partly because I think it is the way we should publish - with no kudos for going through hoops therefore no point in wasting energy on writing hack stuff. The open, signed, peer review system is excellent and allows good dialogue. Papers on Qeios will get attention if they are worth reading. Nobody really cares where something is published if they think it is interesting.
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I definitely understand & appreciate why you like this model but one nontrivial issue is that papers in Qeios aren't indexed by PubMed, Scopus or WoS, so the chance of them becoming known to a wider academic/medical audience is far less than it would otherwise be.

A pity that we don't have a condition-specific journal at a mainstream publisher - IIRC many years ago there used to be a Journal of Chronic Fatigue Syndrome, run by IACFSME I think. I wonder if there would be any interest in starting a new one...
 
Jonathan Edwards said:
isn't that so for all words and acronyms attached to concepts. I don't follow Davison's suggestion that you need language to have concepts. Words are just a set of indices. But by convention they are what we use when we refer to concepts. It would seem a bit silly to make the title 'The Concept Pointed to by the Acronym ME/CFS'
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I come from computer background where names are just handles. Etymology may be important in a real language, but the meaning of words often change while the words remain the same. We hardly ever go back and correct word to reflect the new meaning when people already understand what the word means.

That said, choosing identifiers carefully makes all the difference in the world in programming. And it probably have similarly in case of ME/CFS. Unfortunately, the identifier is already chosen and attempt to correct it, or explain why it is wrong, is more likely to introduce more problem than it solves.
 
poetinsf said:
I come from computer background where names are just handles. Etymology may be important in a real language, but the meaning of words often change while the words remain the same. We hardly ever go back and correct word to reflect the new meaning when people already understand what the word means.

That said, choosing identifiers carefully makes all the difference in the world in programming. And it probably have similarly in case of ME/CFS. Unfortunately, the identifier is already chosen and attempt to correct it, or explain why it is wrong, is more likely to introduce more problem than it solves.
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I interpreted the point of the article to be that ME/CFS should be identified with the condition that is now described in things such as the Canadian Consenus Criteria, that this is a meaningful classification of a syndrome very different from something like chronic fatigue or other already existing things and that the phenomena other people have previously used to describe with the words ME and CFS largely only bare historic relevance (at least in the cases where they are describing an entirely different phenomena, which is often the case)? What problems would that introduce?
 
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poetinsf said:
I come from computer background where names are just handles. Etymology may be important in a real language, but the meaning of words often change while the words remain the same. We hardly ever go back and correct word to reflect the new meaning when people already understand what the word means.
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But my point is that the etymology of ME/CFS is completely irrelevant. The origins of ME/CFS are a shoal of red herrings.

The problem I am trying to illustrate is that the meaning of 'ME' didn't change. The physicians who used it went on telling patients they had the illness at the Royal Free. Even to the extent that the ICC lot wanted to change it back to some speculated neuroimmune viral disease. For everyone else 'ME' was just yuppie flu - an illness that people imagined they had. Which is why there has been so much antagonism. The CCC group tried to get over this but I suspect were still too heterogeneous a bunch to quite get it clear.
 
Jonathan Edwards said:
And I think we are very much at a concept stage in the sense that a syndrome concept is actually more than just a group of people with similar clinical problems. It entails the assumption that putting these people in a group is likely to be justified by some common process that will have a common implication for prognosis and response to treatment. In fact a pretty complex concept. But a pragmatic one.
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"Syndrome" may be a concept the same way "disease" is. But I don't think you need to know the underlying mechanism to identify the disease as concrete or group patients into one. We don't call Altheimer's, or dementia, a concept, after all. (Calling it a concept, btw, may inadvertently give impression of the disease being an artifact of your mind).

Things are more subtle because we do not know if this is the best way to group people's illness.
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But that is how we usually classify diseases, by a set of symptoms. It's true, a single symptom, like fever or fatigue, can have multitude of causes. But a complex set of symptoms rarely maps to multiple different processes. The larger the set, or more unique the symptoms, the less likely to have multiple different processes. And PEM is as unique as they come.

The difference from 'ME' is that that was based on a presumption of a particular sort of unifying process. ME/CFS simply entails that we think there is a commonality of process that will prove clinically useful.
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And that is probably a very good presumption. I can't imagine PEM, never mind constellation of other neurological symptoms, having disparate causes/processes. It's still possible, I'd admit, that there could be multiple causes/processes that causes PEM, etc. But I don't think that matters. If that turned out to be the case, the grouping will split and continue on separate paths. Till then we should procede with what we know rather than paralyze ourselves with the idea of "anything is possible".
 
poetinsf said:
We don't call Altheimer's, or dementia, a concept, after all.
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In medicine we very definitely do.

The word concept is traditionally used to mean both the conception and what is being conceived. Linguistic philosophers may want to separate the two but in standard usage it is usually pretty clear how the term is being used. This seems to be to be a discussion about angels on a pinhead.
 
poetinsf said:
But that is how we usually classify diseases, by a set of symptoms.
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No it isn't. In medicine it is usually assumed that with a 'disease' there is some objective evidence of what sort of process we are dealing with. In usage by the public maybe not but the article is intended to be a discussion in terms that physicians can folllow. The pointer to the sort of process might be. causative agent or some structural or chemical pathology. So tuberculosis is considered a disease and so is diabetes and so is was multiple sclerosis from the time plaques were identified.

The term 'syndrome' is specifically used to be a placeholder when we want to group patients on symptoms or signs without needing to know what sort of process links them. The distinction may be subtle but 'disease' has all sorts of connotations about damage for most of the public that I personally think are much better avoided.
 
poetinsf said:
And PEM is as unique as they come.
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Discussions here suggest that things are a lot more subtle. Some members do not recognise the standard description of PEM. There are claims that PEM occurs I other conditions. I agree that in a sense PEM is all you need for the syndrome of ME/CFS because the other things are implicit but as indicate in the article I am not convinced we have got our descriptions and definitions absolutely clear yet.
 
Jonathan Edwards said:
In medicine we very definitely do.

The word concept is traditionally used to mean both the conception and what is being conceived. Linguistic philosophers may want to separate the two but in standard usage it is usually pretty clear how the term is being used. This seems to be to be a discussion about angels on a pinhead.
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Sounds like we have problem with the concept of "concept". Why don't we fall back to the common usage of it, "an (abstract) idea"? You may be calling ME/CFS a concept in a technical sense, but it could be understood as an idea rather than something real. I'd be careful especially if the paper is directed to general public.
 
Jonathan Edwards said:
This seems to be to be a discussion about angels on a pinhead
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Or the devil in the details.
Jonathan Edwards said:
The word concept is traditionally used to mean both the conception and what is being conceived.
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Everything is a concept. Everything. It is baked into whatever idea you are trying to convey or discuss. Bringing attention to a medical term and then adding "concept" to it is not only redundant, it potentially brings attention to and then amplify the message that the medical term - in this case ME/CFS - is, in fact, merely an idea or a belief with no status as a concrete medical entity.

After 40+ years I think as a community and as a disease we are concrete enough to brave medical orthodoxy and dispense with whether we offend their protocol of what constitutes proper medical dialogue - or disease.
 
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poetinsf said:
but it could be understood as an idea rather than something real. I'd be careful especially if the paper is directed to general public.
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I guess it is directed at people who have developed an understanding of how biomedical science works or want to. In that context I cannot see how there can be a problem since I make it absolutely clear what the concept is referring to. That is both something real - a group of patients - and the idea that it is useful to consider them together. I realise that the general public over simpler ontological frameworks but biomedical science does not work that way and the idea is to reduce confusion by trying to get clear exactly what the term is referring to.
 
duncan said:
After 40+ years I think as a community and as a disease we are concrete enough to brave medical orthodoxy and dispense with whether we offend their protocol of what constitutes proper medical dialogue - or disease.
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Well, so far that approach on the part of patients and 'ME expert' physicians has led to decades of ridicule as you know. Maybe it would be a good idea to talk the language of medicine about the illness rather than using terms that will ensure that ridicule continues for a few more decades.

It is because people like George Monbiot do not always catch the complexity of the situation that White, Chalder and Sharpe can dismiss them as unhelpful dualists. If you want that antagonism to carry son then that is your prerogative but it seems pointless to me.
 
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