When is an illness classified as neuroimmune?

[Andy]

Are all illnesses that involve the immune and neurological systems labelled as neuroimmune? Are there any that aren't? And if so, why not? I've tried investigating this myself and the information that I can find is vague and unsatisfying, so I'm hoping that the S4ME hive mind can help out here.

 

[Jonathan Edwards]

There is no agreed category of 'neuroimmune disease'. A pathological process that involves an immune response and nervous tissue can be called neuro-immune uncontroversially in that there is no additional implication. Calling something a neuro-immune disease is a bigger deal because it implies you know what is going on. Nobody would complain if you called multiple sclerosis a neuroimmune disease because we know enough to say that, similarly autoantibody-based encephalitis. But whether Parkinson's is neuroimmune, or Alzheimer's few would want to decide. And equally lupus is not called a 'neuro-immune disease' because it involves a much more general immune malfunction, even if it includes encephalitis. Similarly for Wegener's, rheumatoid, Churg-Strauss syndrome, scleroderma. all of which can have neurological involvement.

 

[Jonathan Edwards]

In the context of ME/CFS I think the label neuro-immune disease may turn out to be reasonable but at the moment it is likely to cause confusion. Diabetes involves immune and nervous systems but the nervous involvement is not 'neuro-immune'. ME/CFS might be similar. There might be some general problem that affects both systems. In contrast there might be an effect of immune activity on nerves - as suggested in our Qeios model. Until we have some evidence I think using the neuro-immune term may put people off track.

There is the additional problem that 'ME' was considered a neuroimmune conditions on the grounds that it was thought that an abnormal immune response gave rise to encephalitis. The got muddled in with the ICC definition of ME/CFS. As clean a break as possible with that confusion would help.

 

[Kiristar]

There is no agreed category of 'neuroimmune disease'. A pathological process that involves an immune response and nervous tissue can be called neuro-immune uncontroversially in that there is no additional implication. Calling something a neuro-immune disease is a bigger deal because it implies you know what is going on. Nobody would complain if you called multiple sclerosis a neuroimmune disease because we know enough to say that, similarly autoantibody-based encephalitis. But whether Parkinson's is neuroimmune, or Alzheimer's few would want to decide. And equally lupus is not called a 'neuro-immune disease' because it involves a much more general immune malfunction, even if it includes encephalitis. Similarly for Wegener's, rheumatoid, Churg-Strauss syndrome, scleroderma. all of which can have neurological involvement.

In the absence of such a category, do you think once decode is out that ME/CFS will be reclassified as a straight immune disease? Or would it warrant the creation of the neuro-immune category label?

As a lay person I confess I find it quite helpful as a term to preemptively head off the "all in your head" conceptualisation, but yes my use is really more referring to the foremost symptomology.

 

[Jonathan Edwards]

In the absence of such a category, do you think once decode is out that ME/CFS will be reclassified as a straight immune disease? Or would it warrant the creation of the neuro-immune category label?

As a lay person I confess I find it quite helpful as a term to preemptively head off the "all in your head" conceptualisation, but yes my use is really more referring to the foremost symptomology.

Categories like this do not mean anything in medicine. They crop up in diagnostic coding systems, but that has nothing to do with the reality of science or practice.

I don't think categories like these head anything off either. ME/CFS could just be the idea of having a neuro-immune disease called ME. As indicated on another thread I think 'all in the head' has to be unpicked because people manipulate the term to mean different things.

 

[Creekside]

Elsewhere someone claimed that ME involved neuroinflammation, so I pointed out that there wasn't clear evidence of inflammation, so the difference between neuroimmune and neuroinflammatory was important.

 

[MrMagoo]

It’s a side issue but I feel like the “wellness industry” has hijacked “inflammation” recently.
Lay people keep mentioning to me about reducing inflammation in the body, or ME being “inflammation” and I don’t think they’re referencing the activity of Cytokines or T or B cells or immune response or CRP levels, I think it’s to do with sugar/stress/gluten whatever the food baddie is these days plus stress/no exercise.
It seems to be the latest fad.

 

[Yann04]

It’s a side issue but I feel like the “wellness industry” has hijacked “inflammation” recently.
Lay people keep mentioning to me about reducing inflammation in the body, or ME being “inflammation” and I don’t think they’re referencing the activity of Cytokines or T or B cells or immune response or CRP levels, I think it’s to do with sugar/stress/gluten whatever the food baddie is these days plus stress/no exercise.
It seems to be the latest fad.

Very much.

I find it funny when a product advertises itself both as “anti inflammatory” and as “boosting the immune system”…

 

[Sasha]

In the context of ME/CFS I think the label neuro-immune disease may turn out to be reasonable but at the moment it is likely to cause confusion. Diabetes involves immune and nervous systems but the nervous involvement is not 'neuro-immune'. ME/CFS might be similar. There might be some general problem that affects both systems. In contrast there might be an effect of immune activity on nerves - as suggested in our Qeios model.

Is it the system that does the damage that is put into the classification, or the system that gets damaged, or both? For example, in MS, I assume it's the immune system attacking the nervous system, and you say upthread that MS is a neuroimmune disease, so it seems to be that both the culprit and the victim go into the name?

Diabetes involves immune and nervous systems but the nervous involvement is not 'neuro-immune'.

Why not? If the immune and nervous systems are involved, they're presumably culprits or victims and so should end up in the classification, as for MS, if my logic is correct. But diabetes is listed as a metabolic disease so that's clearly wrong. But then what are the rules? I'm all confused...

 

[Jonathan Edwards]

But then what are the rules?

The rules arise arbitrarily as language evolves for names of departments, book chapters, and all sorts of things. There is nothing remotely logical about disease classification so it should not be used as an argument for anything being true.

Imagine that there is a fashion that gets called 'retro-glam'. It could be 'glam-retro' and one might sense that that had a slightly different meaning but in reality it is just how someone first used it.

 

[Sasha]

The rules arise arbitrarily as language evolves for names of departments, book chapters, and all sorts of things. There is nothing remotely logical about disease classification so it should not be used as an argument for anything being true.

Imagine that there is a fashion that gets called 'retro-glam'. It could be 'glam-retro' and one might sense that that had a slightly different meaning but in reality it is just how someone first used it.

This really begs the question of what we're going to call our illness once we've got some clear pointers, because PwME and our charities are going to want to call it something. My understanding is that you've criticised the use of 'neuroimmune' for ME/CFS so far because we've had no definitive evidence of for either the neuro or the immune bit, but the reason that PwME are so keen for a label is to make it clear that it's not a psychological condition that simply consists of 'wrong thinking'.

If we want it to be called something sensible, and if you think that this is the year when the science is going to start falling into place, now's the time to be thinking about it, in order to be able to try to influence what gets adopted.

So, say that a piece of research shows definitively that the glam and retro systems are both involved, could we call it a glam-retro/retro-glam illness? But not disease, if we haven't nailed down a mechanism?

 

[Jonathan Edwards]

PwME are so keen for a label is to make it clear that it's not a psychological condition that simply consists of 'wrong thinking'.

And I think that is just asking for trouble. We ended up with everyone saying it was neurological because ME was coded as neurological, perpetuating the confusion between ME and ME/CFS.

Big words do not make illnesses important. What will drive progress are conclusive data that show what is going on. We will get that.

 

[Kitty]

This really begs the question of what we're going to call our illness once we've got some clear pointers, because PwME and our charities are going to want to call it something.

People will want to call it something once the underlying processes are better understood, but patients probably won't get to choose.

And it probably won't matter, because no label tells you everything about what's in the bottle. As long as it signals what sort of things the liquid is used for and whether or not you can drink it, it's enough.

 

[Kiristar]

People will want to call it something once the underlying processes are better understood, but patients probably won't get to choose.

And it probably won't matter, because no label tells you everything about what's in the bottle. As long as it signals what sort of things the liquid is used for and whether or not you can drink it, it's enough.

They did with Long Covid though. So patients can and I suspect quite likely will have at least some influence on the evolution of language terminology.

Precisely because of its unfortunate historical misattribution, many will feel it now needs something more appropriate to help escape the grip of stigma.

I would be surprised if charities and advocacy groups will be prepared to wait as long as the most scientific members here think they should, because clinical prejudice will linger and PwME will still feel we need to combat that every way we can.

But yes I totally agree that it's critical that the science is robust before that happens.