The Concept of ME/CFS

I take it as a given that you know what you're talking about, @Jonathan Edwards. In my knowledge, there is often a difference between the way a particular word is used by everyday people, and the way that same word is used within a profession. This may be obvious, but it seems to me that "concept" as used in medicine paints a picture of an illness, whereas in the public mind it means an idea that is in the mind only.

 

FWIW, as a non-medic, I don't agree. I think it simply means a framework by which we understand things. Ideas don't only refer to imaginary things.

 

You may be correct.

In my layman's way, I've seen enough cannibalism among the medical community - specifically over contested diseases - to leave me with the impression that most doctors just won't give a shit what or how anything is explained to them, even from a respected and credentialed colleague, if it challenges or threatens what they already believe. Arrogance being a tough nut and all that.

But we all keep trying, too. I just wouldn't give the outright medical bigots in the bunch, or those invested in the status quo for whatever reason, even an inch to turn against us.

ETA: To use an analogy that may resonate more in the US these days, which is better: The concept of a plan, or a plan?

 

But I see this as an unnecessary semantic quibble. In medicine just as in ordinary life we have concepts for realities, and also concepts for things that are speculative. The term 'concept' is used for both the idea and the thing much of the time. It is used in discussions of how we are understanding things - which is clearly what the paper is about.

I don't actually think anyone without ME/CFS would see a problem here. I suspect that people with ME/CFS have got very sensitive to this sort of semantic distinction. Fair enough, but the point of the paper is to trace out how this has all been a muddle and that if we think about what we really mean by ME/CFS, in other words what idea of a reality do we have, then we may get less of doctors calling each other names in daily newspapers and we may get more rational management.

 

Agreed but insisting that people have a 'disease' called 'ME' gives them enough rope to hang the entire membership of S4ME. And they have delighted in doing so for twenty years.

 

Isn't it the case that we all experience worsening of symptoms 12-48 hours after an exertion over certain threshold? I understand that there are some variations; I myself have described post-exertion fatigue coming in three distinctive waves. But the standard description certainly fits me. Feel free to point me to the thread/posts, I'd be interested in reading in more depth -- I haven't kept up lately.

 

Yes, my issues, not with eating my meal at the weekend, posted earlier in this thread, but with keeping it down sent me straight into PEM 14hrs later and then in came the light and sound intolerances an hour after that.

 

From reading the threads I would say it was no where near as stereotyped as that. And what is 'a certain threshold'? Is it defined in a circular fashion as that which gives PEM? In my article I make it clear that something about the time course of worsening is what makes ME/CFS a concept that looks to be useful. A number of people here have said either they do to get PEM is typically described or no longer get it because they pace.

 

I have added some citations and am hoping to get this in a form ready for publishing fairly soon. More thoughts welcome. I think there is still a bad paragraph at the end about ME/CFS being a 'fact' of a group of (ill) people when I have to admit that it is also a concept of a legitimate grouping of such people. I will review the text again next. Thanks to Nightsong for the Acheson references.

 

PDF for those who need it

 

Great stuff! Thanks for all your hard work on this, @Jonathan Edwards.

I have a mix of nitpicking stuff and more substantive comments.

Page 1

'Without known pathology 'multisystem' is unwarranted.' - Better with a comma after 'pathology'.

'...well illustrated in the Guideline text.' - Counterintuitively (I've had to look this issue up in the past), 'Guideline' should be lower case, even though it comes from a proper noun. To make it clearer, you could say, 'NICE guideline'.

'Firstly, people with ME/CFS have persistent unpleasant and disabling symptoms, varied and hard to describe...' - I'm a bit worried that this 'hard to describe' phrasing might be understood as 'hard to describe because they're not really proper recognisable symptoms, just figments of the patients' imaginations'.

I wondered whether it might be better not to abbreviate PEM, since the abbreviation gets defined early and then doesn't turn up again for so long that the reader might have forgotten what it means.

'...pathway specific drugs...' - Better as '...pathway-specific drugs...'?

'Unpleasant symptoms in ME/CFS include nausea, orthostatic intolerance, pain, (hence ‘malaise’)...' - I've always been confused about the definition of 'malaise', and this sentence also confused me. Are you saying that these things collectively are malaise? Or that pain is? I had thought that malaise was simply the feeling of being ill that you get when you have the flu - a sort of fluey ache - but maybe it isn't? I wouldn't have called nausea or OI or pain individually 'malaise'.

Page 3

'Clear clinical definition has allowed unproductive theories such as deconditioning cycles to been shown to be off target.' - Should be '...to have been shown...'.

Page 4

'...but its proponents have shown no recognition of their lack of understanding of either the illness or research methodology needed to identify effective treatment...' - Better as, '...but its proponents have shown no recognition of their lack of understanding of either the illness or of the research methodology needed to identify effective treatment...'?

Title: 'Where is best placed to manage ME/CFS?' - Better as 'Who is placed...'?

Page 5

'The advantage of ME/CFS is that it is overtly a pragmatic compromise term...' - Can't remember if I've said this before but I'm not sure that it is overt that this is pragmatic . I wonder if it would be safer to say simply that it is a compromise term. (How annoying that the name for our illness is a compromise between two stupid things.)

'ME/CFS appears to be based on a process at the interface between central nervous and immune systems at a level that currently we have no way of modelling.' - The biomedical aspects of all this are way over my head but at the beginning you say, 'Without known pathology ‘multisystem’ is unwarranted. Despite frequent claims of metabolic or immunological changes nothing consistent has been found that would explain the clinical presentation.' Does your early statement that this is a CNS/immune system issue contradict this later statement that no consistent immunological changes have been found? I couldn't see the basis for the CNS/immune system claim (but as I said, over my head).


I hope this comments are helpful. This really is a superb piece of work and I hope it has a big effect on the right people.

 

Excellent. Thank you Jonathan. My minor suggestions (some overlapping with Sasha) —

The following is in a sense an attempt to answer.
->
The following is an attempt to answer.

The United States Institute of Medicine (2015) suggested ‘Systemic Exertion Intolerance Disease’ but there has been no enthusiasm.
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Maybe "no enthusiasm to adopt this term"

It signifies not only what we have moved on from, but also that we have moved on.
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I would italicise here. "but also that we have moved on."

I can only give a personal view, but one based on listening daily over a period of ten years, as a disinterested party
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Not sure you can claim to be a disinterested party if listening daily for 10 years!! Maybe neutral, objective or unbiased?

Firstly, people with ME/CFS have persistent unpleasant and disabling symptoms
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Minor: I think "First" is generally preferred over "Firstly"

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.
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Unpleasant is an understatement, reminiscent of "bothersome". Maybe an additional sentence denoting the severity, perhaps paralleling with the unsatisfactory term "fatigue" which I think we all agree is an experience nothing like the fatigue we were well used to prior to illness.

Syndromes allow of heterogeneity of contributing causes
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Drop first "of"

that there are a number of people in the community seriously disabled by a particular pattern of symptoms
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that there are a significant number of people

suggests that there can be a fall in respiratory function during exercise
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Maybe metabolic would be better than respiratory so the reader is not confused by pulmonary function

Clear clinical definition has allowed unproductive theories such as deconditioning cycles to been shown to be off target
->
to be shown

a Californian who has been on enteral feeding
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Also parenteral

Where is best placed to manage ME/CFS?
->
Who

that patients have acquired unhelpful ideas about what is wrong with them and that these ideas may directly or indirectly inhibit recovery. There is little or no reliable evidence for this.
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I'd drop the "little or" and just say "no reliable"

 

In addition to @Sasha's and @SNT Gatchaman's valid remarks..

I just read this for the first time and it was clearly written and I could understand it. There were a couple points I will remark upon:

"The United States Institute of Medicine (2015) suggested ‘Systemic Exertion Intolerance Disease’ but there has been no enthusiasm."

The end of this sentence just seems a bit awkward. I personally would add "for this term" after the word “enthusiasm”. you could also just change the wording to "but this proposal has not gained significant traction"….

I would drop the word “unpleasant” And just use the word “symptoms“ instead of “ unpleasant symptoms of ME/CFS"??

In my copy of the pdf, at the end of that problematic paragraph that starts with "Building an effective care system" a page line is skipped.


I really was taken with the ending section, "a concept to build on".

 

Thank you.

Thanks to everyone who contributed, thanks for listening, thanks for hearing and thanks for acting, as always.

 

@Jonathan Edwards - I woke up thinking about this!

'Firstly, people with ME/CFS have persistent unpleasant and disabling symptoms, varied and hard to describe...' ​

As I mentioned in my earlier post, I was worried what an ME/CFS-sceptical clinician might make of symptoms that patients found hard to describe. But now I'm wondering which ones you mean, because if we have found it so hard to describe certain symptoms even to you, who have listened so long and so carefully to us, then (a) we've got a problem but also (b) maybe there's an opportunity to identify some unique issues that might point to an underlying biological process, if some of our symptoms are so weird that they don't have an existing name that we can call them.

 

My view is that the only way to get people to understand the reality of ME/CFS, in the way that I have, Amolak Bansal has, Nigel Speight has, etc., is to be up front about this. And if a physician is ready to listen they will be well aware that hard to described symptoms are often key to illnesses. The aura of temporal lobe epilepsy is indescribable but its existence is considered a diagnostic feature. Flu symptoms are fairly indescribable, so we call them flu-like symptoms. Tingling is pretty indescribable but at some time in childhood when we tell a parent our hand feels funny and they ask if it is a bit like feeling pins and needles we find there is a word we can share that points to the indescribability.

It might well be that there are more words the ME/CFS community could find that would allow them to compare notes - like brain fog. The trouble is that they won't mean much to other people unless there is a metaphor of that sort.

I am keen to focus the debate on to the symptoms themselves because they are the problem patients face. Constantly invoking presumed physiological changes in metabolism or blood flow or immune response takes us into speculation. There is nothing speculative about the symptoms.

 

This is very interesting (and surprising, to a non-medic). But do you have any specific ME/CFS symptoms in mind? I'm trying to think of which symptoms we have trouble describing and I'm not sure what they would be. And it sounds as though it might be important to identify any examples, given what you say about temporal lobe epilepsy. (I don't want to take this thread off-topic, though.)

 

Thanks. Do members have examples on this? I think it has been mentioned here but I forget. I don't need any names but if I have reliable information that people come off PEG feeding I can put in a sentence to that effect without needing a formal citation.