The Concept of ME/CFS

[SNT Gatchaman]

I'm a bit leery of referring to ME/CFS as a "concept" Feels uncomfortably close to idea or belief, and can illness belief be far behind?

I think that may be stretching things. Diabetes is a concept, disabled people is a concept. I am trying to make the point that ME/CFS is useful as a syndrome concept - the nature of which I go on to describe

Suggestions for a better title are welcome.

Would "The Conceptualisation of ME/CFS" work better? To me that slightly shifts the framing to an active academic endeavour in the mind of the reader and medicine/science generally, and away from a suggestion of "abnormal beliefs in patients' heads". It also positions it as a dynamic, developing process, with even our description of core features such as PEM potentially yet to be refined as mechanisms are uncovered.

This may need clarifying a bit. People do talk about fatigue, but the difference is that they describe feeling exhausted and ill, the way people do with 'flu.

I would delete this sentence and expand the first part of this paragraph, because it is a key concept: many of us feel that our experience cannot be reduced to even a more severe version of 'normal fatigue'

Yes it's definitely fatigue, but it's FATIGUE! - intransigent, just varying in intensity and associated with a feeling of being poisoned - that something is fundamentally wrong at a cellular level. How I might imagine the early stages of being in a cyanide gas chamber might feel.

 

[Sasha]

On a second read of this, I'm wondering whether this is true:

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 may be taking this weirdly out of context due to brainfog but I don't think that 'ME/CFS' has this implication. I think you make a very good argument that a term that names our disease should indicate a syndrome of symptoms without implying aetiology or any theoretical framework for treatment. But I don't think that 'ME/CFS' does that. I think it's just two bad names cobbled together, one implying an aetiology and the other fixated misleadingly on just one symptom.

 

[Sasha]

Trying to come up with a title that flags up more clearly what the article is about.

'ME/CFS: Time to recognise it as a typical syndrome concept without pretending that we understand it or know how to treat it'

Anybody got any advance on that?

 

[Jonathan Edwards]

@Jonathan Edwards - Is there a particular reason you mention Robert Souhami in the opening to the article? I'm not your target audience but I've never heard of him and wonder whether he's a bit of a stumbling block to other readers at the beginning.

He was regarded as perhaps the most rigorous and articulate UK medical mind in the last decades of the twentieth century. He is still around and as sharp as ever. He may be a distraction but the target audience is the physicians who ought to see the need to set up and take responsibility for ME/CFS care. I did wonder about that.

 

[Nightsong]

I found this interesting article by Souhami in the BMJ (think it's open access), which included this paragraph:

As a student, I was sometimes defeated by explanations of signs, symptoms, and mechanisms of disease that didn't seem to make sense—at least to me. Later, I realised that words like “idiopathic” or “functional,” often used as if they meant something other than ignorance, were useless. It seemed to me that good teaching would own up to, and demystify, lack of understanding.

I have no great objection to "concept", but if we're looking for alternatives... "ME/CFS: A discrete clinical syndrome"; "Towards a clear clinical conception of ME/CFS"; "ME/CFS: Moving beyond old labels"; "ME/CFS: A disabling syndrome and its impact"; "Reframing ME/CFS: a distinct clinical syndrome"... none of those sound quite right, but maybe something more along those lines?

"New wine in old bottles"? (only joking)

Seems doubtful that there's any support for re-opening the naming issue? I'd certainly like an aetiologically neutral name but certainly not one as reductive or trivialising as "chronic fatigue syndrome" (personally I'd suspend the rule that discourages eponymous names and call it something like "Ramsay-Acheson syndrome" - or maybe Ramsey and one of the American patient pioneers such as Peterson or Cheney - sounds serious enough, doesn't make any claims as to aetiology or pathophysiology, doesn't emphasise one symptom and distinctly non-trivialising.)

 

[Jonathan Edwards]

But I don't think that 'ME/CFS' does that. I think it's just two bad names cobbled together, one implying an aetiology and the other fixated misleadingly on just one symptom.

I think it is now serving that purpose. Nobody using the term is wanting to invoke the meanings either of ME or CFS. They are wanting to invoke a new meaning with a new consensus - basically the motivation for the Canadian Criteria publication. Alastair Miller builds exactly the same argument in 2015 except that he gets a variety of details muddled about the meaning of ME so that the fact that is was never really intended to mean ME/CFS is obscured.

When I am at meetings where we discuss ME/CFS research, or the NICE committee or talking with service commissioners we use ME/CFS to indicate the new syndrome concept.

 

[Sasha]

He was regarded as perhaps the most rigorous and articulate UK medical mind in the last decades of the twentieth century. He is still around and as sharp as ever. He may be a distraction but the target audience is the physicians who ought to see the need to set up and take responsibility for ME/CFS care. I did wonder about that.

If he'd be well known to your target audience, who would be intrigued by your mention of him, it might be good to keep him in, but would he be known to the younger doctors? Or at least to whatever age band / level of seniority you're aiming at?

I'm wondering whether, since you mention him on the way in, you might want to mention him on the way out? Do you know what he thinks of your ideas?

 

[AliceLily]

I have fatigue/tiredness/exhaustion/lack of energy in what I believe is the usual sense.

The switch occurs from usual to unusual when healthy fatigue/tiredness/exhaustion becomes an obvious disease, illness. You know there is something very wrong. Same with other symptoms of ME.

 

[Sasha]

I have no great objection to "concept", but if we're looking for alternatives... "ME/CFS: A discrete clinical syndrome"; "Towards a clear clinical conception of ME/CFS"; "ME/CFS: Moving beyond old labels"; "ME/CFS: A disabling syndrome and its impact"; "Reframing ME/CFS: a distinct clinical syndrome"... none of those sound quite right, but maybe something more along those lines?

Those are good!

Seems doubtful that there's any support for re-opening the naming issue? I'd certainly like an aetiologically neutral name but certainly not one as reductive or trivialising as "chronic fatigue syndrome" (personally I'd suspend the rule that discourages eponymous names and call it something like "Ramsay-Acheson syndrome" - or maybe Ramsey and one of the American patient pioneers such as Peterson or Cheney - sounds serious enough, doesn't make any claims as to aetiology or pathophysiology, doesn't emphasise one symptom and distinctly non-trivialising.)

I wrote and deleted an almost identical paragraph, including saying it would be better if we could name this thing after someone to avoid all the other issues, but I think it's too late to change the name - and that the time will be when we get clarity on mechanism in some subgroups that can then be split off. I'm hoping that some of the genetic studies that are going on might get us there. Can of worms, though. Arguments used to rage on across hundreds of posts in the old forum.

 

[Jonathan Edwards]

Ramsay-Acheson syndrome" - or maybe Ramsey and one of the American patient pioneers such as Peterson or Cheney

Except that Acheson's idea was different from Ramsay's idea and those were different again from Peterson and Cheney. I agree that ME/CFS carries over concepts that we no longer want but at least it does not try to revive any specific ideas we do not want. Acheson's idea was as I understand it of a new neurotropic viral illness - which ME/CFS is absolutely not.

 

[Sasha]

I think it is now serving that purpose. Nobody using the term is wanting to invoke the meanings either of ME or CFS. They are wanting to invoke a new meaning with a new consensus - basically the motivation for the Canadian Criteria publication. Alastair Miller builds exactly the same argument in 2015 except that he gets a variety of details muddled about the meaning of ME so that the fact that is was never really intended to mean ME/CFS is obscured.

When I am at meetings where we discuss ME/CFS research, or the NICE committee or talking with service commissioners we use ME/CFS to indicate the new syndrome concept.

This is interesting but do you think that this is well recognised outside a fairly small group? I've been surprised to come across the idea recently and wonder whether even patients better informed than I am (not difficult) would be aware of it, let alone the GPs etc. that we have to deal with.

 

[Nightsong]

Except that Acheson's idea was different from Ramsay's idea and those were different again from Peterson and Cheney. I agree that ME/CFS carries over concepts that we no longer want but at least it does not try to revive any specific ideas we do not want. Acheson's idea was as I understand it of a new neurotropic viral illness - which ME/CFS is absolutely not.

Addison described the disease eponymously named for him in the mid 19th century - what did he know of autoimmunity? What did James Parkinson know of dopaminergic neurons in the substantia nigra? The conditions are named after the men who described them, not for any mechanism they may or may not have speculated about.

 

[Trish]

There is extensive and inconclusive discussion of alternative names on this thread: The use of the labels ME, CFS, ME/CFS

 

[JemPD]

I think removing "uncritical" from the sentence helps a lot. But maybe instead of describing it as "who we don't want", describe the quality of the clinicians we do want, which might also get the point across more clearly. Something like "I might even suggest that we need people who are likely to have been trained in disciplines where acknowledgement of the limits of theory-based practice is the norm [and then give examples]."

I think it's always good to iterate what is desirable - gives people something to prove they 'are', rather than getting defensive and digging in as a reaction to criticism (however justified we know that crit to be)

Yes it's definitely fatigue, but it's FATIGUE!

For you perhaps, but its not for me. Fatigue is an entirely different bodily sensation to that of the weakness experienced when having the flu/other infection. The 2 are not quite chalk & cheese, but something like cheese & tomatoes - both food, both oft experienced together but still a very different experience eating them.

So not at all about severity for me, it's just not fatigue for me. Not tired, by even an extreme degree, but ill. But I accept many people also would say it as you do SNT.

I think your suggestion to say 'many people with ME/CFS' is a great way to frame it @Jonathan

I think the idea of titling it 'Conceptualising ME/CFS' or the other options suggested is a great one (sorry i thought I multiquoted it as i was reading but i didnt & now i cant find it to quote whomever suggested it) I think it's good, because I have oft read/seen/heard compassionate Drs & HCPs share something to the effect of not being sure how to see it, how to frame it, what lens to view it through. I think they'd be interested to take their time to read it & it would help them.
A lot of people just dont know what the hell to think about us.

I think this would be such a help to sensible people, its a great piece Jonathan, as always.
Words nowhere near enough to say thank you.

So so clear. I feel i could give it to a GP relative, any consultant I see for any specialty, AND, my intelligent aunt who cant quite get her head around the whole 'is ME the same thing as CFS' question

 

[JemPD]

One thing I did wonder, and I have no idea at this moment where it could be included or even if it should be.

But I'd love to see it stated plainly that CF does not = ME/CFS and that the conflation is unhelpful.

Edited to add: what i mean is the shortening of CFS to CF confuses things hugely, because, since CF does not = ME/CFS, nobody knows whether what is being meant when they say the patient has 'chronic fatugue', is that the person has ME/CFS or whether they mean the patient is TATT.

Sooo many Drs/HCPs seem to think that CFS = CF = the new name for TATT. Hence the 'we all get tired' crap that we get repeatedly subjected to.

I know you talk about fatigue in other illnesses, but I'd love to see it stated somewhere to tell Drs to stop calling what i suffer from 'chronic fatigue', that there needs to be clear demarcation. I know thats what the entire thing is about. But I'd love to see it spelled out in a way that cant get lost.

Please please forgive me if it already does say that, I only read it once & it took me ages because I'm over my limits but was too excited to read it to wait.

Also I think i spotted a couple of typos... are you interested in that?

 

[Jonathan Edwards]

The conditions are named after the men who described them, not for any mechanism they may or may not have speculated about.

Yes but Acheson was describing something quite different from ME/CFS -which is the main point of the article. He was describing something that he thought existed on etiological grounds, that, incidentally, Ramsay had suggested was a trigger for something like ME/CFS. ME/CFS isn't Acheson's disease. Addison's disease remains what Addison described.

 

[Jonathan Edwards]

This is interesting but do you think that this is well recognised outside a fairly small group?

I think it is recognised by anyone of any use to people with ME/CFS in the research and clinical world. It is standard usage at conferences. And it has been around for twenty years. Lots of patients are not aware of it and lots of doctors simply cannot be bothered to take an interest but if they are going to take anything on board it will be this rather than a concept of ME that we all remember got buried in the 1980s.

But the whole point of the article is that very few people seem to have thought it fully through. Miller has had the same concept but was unaware of the real confusion in the history. It matters because even the NICE guidelines carry over baggage from the history that is unhelpful. A lot of current advocacy not only carries over that baggage but actually adds to it. I don't think any of MEA, MERUK or AfME really see how important this is.

The importance is that unless it is properly understood physicians are guaranteed to continue to take no interest.

 

[duncan]

If I were going to mention ME/CFS in the context of a concept, I might want to mention how such a concept can be abused, and cite the Walitt NIH study as an example.

 

[Jonathan Edwards]

if we're looking for alternatives..

The alternatives are nice but I think miss the point. The article is not about some new conceptualisation of ME/CFS or something emerging. The concept I am talking about has been around for twenty years and has been well described by others. The key point of the article is to disentangle the confusion with historical concepts that is getting in the way of any dialogue with physicians and I worry may actually be making individual patients worse.

Why did the NICE guideline call it a 'complex multi system disease' when it isn't? Because everyone was happy to include that guff to keep certain other people happy and because they thought it did no harm. I think that may be a mistake.

In simple terms Maeve died because enough people, maybe including her, thought she was going to die anyway of a progressive neurological disease. That is a catastrophe.

 

[ME/CFS Skeptic]

In simple terms Maeve died because enough people, maybe including her, thought she was going to die anyway of a progressive neurological disease.

Do not want to divert the discussion too much, but what this truly the case? I got the impression that only the coroner believed this because the physicians involved in her care tried to argue that nothing more could be done (to get themselves off the hook). They seem to hold a psychosomatic view of ME/CFS.