The Concept of ME/CFS, 2024, Edwards

[Robert 1973]

Maybe there are physicians who're interested, but their involvement is less public?

There are good scientists, but I imagine they're doing full time+ jobs. That'd mean they're less able to engage online.

My comment wasn’t a criticism of scientists doing ME/CFS research. I’m hugely grateful to them [edit: the good ones], and we need many more of them too, but anybody who is doing research has an unavoidable COI when commenting on anything within that field. The same applies to private physicians.

 

[Robert 1973]

@Jonathan Edwards In one of your responses your refer to DecodeME and some of the proteomics studies that are under way. I’m not able to keep up with all the research threads. Are there any particular proteomics studies that you’re hopeful may lead to clues?

 

[Jonathan Edwards]

Are there any particular proteomics studies that you’re hopeful may lead to clues?

Two or three studies have been through peer review at the grant stage and at least one has recently been approved. That is about all I am allowed to say.

I like the idea of doing proteomics on specific pathways. I have been a bit sceptical about proteomics as a fishing exercise but I can see that information might come from more detailed relational analysis in pathway terms.

We often get studies saying that they found some signal for half a dozen genes related to immunity or metabolism or whatever. I think that is unconvincing. However, if signals are found for proteins all belonging to a specific pathway that suggest a specific use of that pathway they may be more compelling. For instance, the complement system has three input pathway branches (at least) and it shifts function once beyond C3 and C4 (C5-9 being related to membrane attack). If consistent signals are found that relate to one branch and stop at C3 that would be of interest.

 

[Simon M]

Can anyone help me grasp exactly what points Chris Snell is trying to make?

He seems to be saying the ME/CFS is an unsatisfactory fudge combining two different views of the illness that isn't well understood.

Whereas you seem to be saying that it is a helpful fudge, divorcing unproven causation from symptom-based definition, helpfully acknowledging our ignorance as a better foundation for making progress. (Is that right?)

focusing on a symptom-based syndrome ...rather than specific physiological markers. The need to dissociate the clinical concept from speculative theories of aetiology is emphasised. ...suggestions made for re-instituting a physician-led service that might allow both safe care and a clinical base for badly needed research.

 

[Jonathan Edwards]

He seems to be saying the ME/CFS is an unsatisfactory fudge combining two different views of the illness that isn't well understood.

Yes, I get the impression, although he says things in a roundabout way, that he wants a causal concept and maybe would prefer ME.

One thing that I think may confuse is that I have acknowledged that including 'ME' is in part a concession to patients' preference. I also mention the important contribution of patients to the science. But the two things don't actually go together. ME was a bad term. I have used it a lot simply because I think the patients have shown more reason to be respected than the doctors - but for other reasons!

I get a sense that US (maybe Canada?) people feel their noses put a bit out of joint by my focus on our ignorance and on events elsewhere. In my life in science US researchers were always far more parochial and defensive about their contribution to the received wisdom.

 

[Kitty]

I get a sense that US (maybe Canada?) people feel their noses put a bit out of joint by my focus on our ignorance

I imagine some of the doctors won't like it much either.

If doctoring's a skill you market like a restaurateur, you need to offer a menu and a wine list. Admitting you can't serve salmon in aspic because you haven't got the hang of it yet isn't going to make you look great.

 

[Robert 1973]

I wish we could get a consensus on calling it ME/CFS, at least until we know enough about the aetiology to call it something else. There seems to be a growing movement among people on this side of the BPS divide to call it ME, which I fear may be counterproductive for the reasons which Jo has explained.

One of the advantages of using the term ME is that it's easier to incorporate into a name. None of the charities use ME/CFS in their names. And the Science for ME/CFS Forum wouldn't have quite the same ring.

Maybe the answer is to use ME/CFS in the scientific literature and not worry too much about whether people use ME or ME/CFS elsewhere. Confusingly, the recent case definition consensus statement refers to ME/CFS on the page where you add your signature but ME in the statement.

 

[Kitty]

Maybe the answer is to use ME/CFS in the scientific literature and not worry too much about whether people use ME or ME/CFS elsewhere. Confusingly, the recent case definition consensus statement refers to ME/CFS on the page where you add your signature but ME in the statement.

I've adopted the habit of writing ME/CFS first, but then shortening it to ME if I mention it again. I wouldn't do it in a formal paper, but outside that context ME is less clunky and more amenable to being incorporated into informal word forms (ME brain, ME-specific, non-ME, etc).

It's not really a solution, but acknowledging that I'm aware of the proper/preferred/scientifically respectable abbreviation seems worth doing.

 

[bobbler]

I’m sorry but I’ve been religiously doing me/cfs and all these things. It isn’t working @Kitty

the force within people is too strong re the cfs bigotry

I just waste my energy explaining it and gif a social prescription woman solving her cognitive dissonance in front of me by saying ‘I think the others I’ve seen have cfs’ as if that would make me happy.

she couldn’t have been told better and had education from me , 25% group materials, physiofirme materials and the OT

but I could see she was intending to let it go in (and is in a position where if different patients are using different terms that doesn’t help - I know both people who only use cfs and those who only use me)

and the me/cfs is now being used to let people choose and use the get out of jail free that it’s two different illnesses - one of which of course every person won’t believe in .

I had faith and having done the theory in realising a new term would be co-opted by bps even worse and we’d end up with it being used like FND very much agreed with this being the way

but it isn’t working unless there is a massive campaign forcing people to see that term as MECFS and banning them using and/or and all the rest.

it’s being played to high heavens in the ground and used massively by those who want to continue to cuddle their preconceptions to avoid updating.

my local clinic has gone from biomedical cfs/me to chronic fatigue syndrome since the guideline change

the coding is still cfs not me/cfs

it’s not working and isn’t happening and I’ve used all my energy to try

I can’t believe have awful people are

it’s such a tyranny letting every person you meet have control over your identity and toy with your access or legitimacy as a person. This is what this situation is doing and has done and I’m seeing no chance of change.

no one is getting told off or forced to change to stop harming or start respecting . So no there no treatment but weve not only not even got basic respect of names but had disrespected ladened by leaving the old guard BACME in charge without telling them they’ll have to be directed by us/that’s now conditional so we’ve got them lecturing US about ‘we will only be listened to if they like it’ veiled in bs phrases like ‘cooperative and professional’ when ignoring and silencing is neither.

And no bystanders have said they need to change their attitude mindset and skills/approach to the illness do they are now emboldened. And are the ones choosing the name of clinic’s therefore our identity and writing the propaganda that goes on websites saying it’s boom and bust etc

they won’t change so why are we being forced to not get rid on that basis so we can have open fresh minds who do want to learn not make up their own narrative to fit their ‘belief system’ which is a tyranny for and our health. Saying we should waste our energy talking to them is tosh because as they’ve demonstrated they aren’t interested in changing just playing that feedback to pretend ‘they are offended’ when they should feel really concerned at their mistakes and want to change us the right reaction. No one can work with that attitude. You can’t leave patients stuck with an immovable object.

And takes away our hope because they aren’t going to be looking at objectively understanding more and making research in the right areas possible

but they are going to influence newbies into saying the right things and telling other heakth professionals oh no I like cfs as a term (stoking disunity with more experience ld patients ‘don’t be like them etc’ assuming we are more ill because we aren’t enthusiastic like them) and to say ‘I think CBT helps’ and ‘I’m feeling better for increasing what I do’ until it doesn’t etc.

Anyway the term is being used by those who’ve been left with power who shouldn’t to cause havoc. It’s being interpreted as a choice not a term. And they are using it to stoke division which is undermining all headway I’ve made with the good other medical professionals who don’t call themselves ‘ME experienced’ but now know more than they do because they’ve taken more of the new info on board than the old guard have. So keeping the old in place is now undermining change because they went quieter fir a few years but I think now feel as they are still here tgat they can go back to assuming no one is going to make them change, it’s back to old habits with the rest defaulting to their claims of being the experts.

 

[DigitalDrifter]

The United States Institute of Medicine[3] suggested the name ‘Systemic Exertion Intolerance Disease’ but there has been no enthusiasm to use it.

I don't understand why, it's far superior to CFS.

 

[Yann04]

I don't understand why, it's far superior to CFS.

Multiple arguments have been made as of why, one of the ones that comes to mind is it’s an easy name to ridicule and misappropriate. “oh I have exertion intolerance disease too! I hate exercise.”

But personally I think it’s far better than both ME and CFS, it encapsulates my experience in a way both those labels fail too. I also think it’s probably the best name we will get before the mechanism behind the illness is found.

 

[Jonathan Edwards]

I don't understand why, it's far superior to CFS.

I personally don't like it as a newly invented term because two of the four words have no basis.
'Systemic' means nothing I can think of here. It implies some sort of generalised process but we don't know of any process yet.
'Disease' is misleading because again it implies some common process - suggesting that the term refers to this process rather than a syndrome. To me that is going backwards. We need to emphasise that we have no idea what process or processes are going on and that there may be many overlapping and interacting processes involved, differing between individuals.
It replaces what we want to explain with an imaginary explanation.

I think this is what Snell finds difficult to handle. He wants a 'disease' that you can get benefits for. To me that is the slippery slope towards fiddling data and hyping theories.

 

[Jonathan Edwards]

And of course 'exertion intolerance' isn't the critical thing either. People with kidney failure and muscular dystrophy have exertion intolerance. The more subtle concept of PEM is missed.

 

[Sasha]

The more subtle concept of PEM is missed.

Is PEM unique to ME/CFS? If so, I'm wondering whether a name based on that would be a good idea. I know we've discussed in the past how it might be better to leave the name alone until we have some clear biological sign (?) but we have no idea how many more years we'll have to wait for that, and in the meantime, one of the reasons why so many PwME are being gaslit and told to 'pace up' in NHS fatigue clinics despite the new NICE guidelines is because PEM isn't widely understood as key.

 

[DigitalDrifter]

Early criticism of the PACE trial focused upon broad inclusion criteria. However, a trial with broad criteria would have been scientifically legitimate if it had been properly designed.

Are you condoning the use of the Oxford criteria for ME?

The names used go in a never-ending progression, each with a rather different ‘meme’ attached: neurasthenia, ME, fibromyalgia, functional neurological disorder, diseases of gut-brain axis, and so upon.

Why conflate Fibromyalgia with ME? They are opposites, Fibromyalgia is a non-deteriorative diagnosis with patients often reporting improvement from exercise whereas ME is deteriorative illness with patients often reporting relapse from exercise.

 

[Starrynight]

I hadn't thought so. I first heard about it decades ago, when I think the ME charities were pointing out that head injury was one of the ways that you could get ME/CFS. I remember being (misguidedly, obviously!) annoyed that they seemed to be watering down the definition of what I thought was a post-viral illness. But my impression was that patients were being diagnosed with ME/CFS following head injury.

Does anyone else remember this or have any references? This is probably from 30 years ago and my memory of it is fuzzy. I may have got it all wrong.

Is there a thread more related to this subject? Even though I would put the most obvious triggering event for my illness to be glandular fever, I have often wondered about the effect of a car accident not long before that.

 

[Kitty]

in the meantime, one of the reasons why so many PwME are being gaslit and told to 'pace up' in NHS fatigue clinics despite the new NICE guidelines is because PEM isn't widely understood as key.

I agree with the sentiment, but it's nothing to do with the name. It's because the people commissioning the services don't want to change anything, and that suits the people delivering them just fine. And because the services have no doctors, and only doctors would be in a position to challenge the status quo.

In the context of the ME/CFS services, it doesn't matter what the name is—they'd still be coming out with the same drivel whatever you called it.

Is PEM unique to ME/CFS?

That's an interesting one, and I'm not sure we know. We still seem to be struggling to describe and define it, it's a bit of a slippery one.

 

[Jonathan Edwards]

Are you condoning the use of the Oxford criteria for ME?

No, but the Oxford criteria were not criteria for ME. They were for chronic fatigue and so legitimate.

The PACE trial was a nice demonstration that CBT and GET do not work, whether you recruit widely for chronic fatigue or consider the fewer ME/CFS cases. It has been pretty useful in that regard. Without it I suspect it might have been more difficult to make the progress we have.

 

[Jonathan Edwards]

Why conflate Fibromyalgia with ME?

You are missing the point entirely. I am not conflating fibromyalgia with ME/CFS. I am criticising the endless stream of misleading terms that try to label process concepts when we have no process concept to label.

I have no reason to think that people with fibromyalgia respond to exercise any more than people with ME/CFS. Surely all the evidence is anecdotal, biased and useless?

I don't personally find fibromyalgia a useful term because the symptoms it is supposed to cover are far too vague to suggest any commonality. I have pain in six places all the time but I don't think I have fibromyalgia.

 

[Peter T]

That's an interesting one, and I'm not sure we know. We still seem to be struggling to describe and define it, it's a bit of a slippery one.

Consensus on terminology is some way off.

• The BPS contingent, if they acknowledge the existence of PEM, define it purely in terms of fatigue, that is a more rapid fatigue response to exertion or activity, rather than an anormal physiological process. Such rapid fatiguability is found in many conditions and is not in any way a unique feature to ME/CFs. Here we seem to be moving towards the position that though rapid fatiguability can be a feature of ME/CFS and associated with PEM it is not what we mean by PEM.
• Here we seem to be moving towards a consensus that PEM is an unusual or even unique phenomenon that contains paradoxical features (eg delayed onset, symptom exacerbation is not modality specific, it can involve symptoms not otherwise observed and/or unrelated to the activity, rest alone does relieve it, it can continue to worsen well after any triggering activity has stopped, even over days or weeks, it can be prolonged well after any triggering activity has stopped and rest been initiated, it often involves a general malaise or flue like symptoms, etc). We regard this as an abnormal or pathological biological process.
• In the wider ME/CFS community including some here PEM is seen as both more rapid fatiguability and the idea of an abnormal exertion response. Not everyone with ME/CFS reports the more paradoxical aspects of PEM included in the point immediately above.

ME/CFS further involves sensory hypersensitivities and orthostatic issues, including the need to be horizontal of periods of time but also these seem to interact with both rapid fatiguability and PEM resulting in cumulative impact on symptoms and severity.

I suspect because these factors rarely occur in isolation it is subjectively difficult to distinguish between the different strands at anyone time or even achieve a consensus between different individuals. Also until an individual has the relevant vocabulary and related concepts it is very hard to describe what is happening, though it could be suggested also that teaching the vocabulary and related concepts results in individuals describing what they feel they ought to be experiencing rather than objectively report symptoms.

[note - sorry my use of prepositions seem to break down with fatigue and or PEM.]