The Concept of ME/CFS

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.

 

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.

 

. . . and after I resigned from working, my sleep returned after a couple of weeks, I slept like a baby again, but I was physically disabled.

 

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...

 

I have been disturbed by this, and consequently haven't made any reference to it to my new PCP (primary care provider).

 

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.

 

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?

 

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.

 

"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).

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.

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".

 

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.

 

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.

 

It does all the time in rheumatology and gastroenterology.

 

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.

 

I think you may have misinterpreted my sentence. ME presumed a single process of a specific, defined neurological sort (encephalomyelitis) that we have no evidence for because it was inferred from a completely different illness - acute Royal Free Disease.

 

I think maybe you are missing the whole point of the article?

 

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.

 

Or the devil in the details.

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.

 

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.

 

The linguistics of 'concept' is hardly detail!

 

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.