Umbrella name for ME, LC, POTS, etc

M

MelbME

Senior Member (Voting Rights)
Umbrella terms are common in research fields, especially in Australia and NZ. It gives small fields in small countries some weight to them.
I'm not suggesting a term that makes them all sound like the same condition, just something that ties us together to bring together a greater mass of interest.

I'd like to know what you think is the best Umbrella term for ME/CFS, Long COVID, POTS? I'd also like to know if we should be adding any other diseases to this group?

"Post-Infection Conditions" is a name I keep coming back to but I'm not happy that it doesn't encompass non-infection triggered patients.
 
To get ball rolling, here's a list I've heard/seen:

Post-Infection Conditions
Post-Acute Conditions
Post-Acute Energy Limiting Conditions
Post-Infection and Energy Limiting Conditions
Post-Infection Fatigue Syndromes
Post-Exertional Malaise Conditions
Energy Limiting Chronic Illnesses
 
MelbME said:
I'd like to know what you think is the best Umbrella term for ME/CFS, Long COVID, POTS? I'd also like to know if we should be adding any other diseases to this group?
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What would be the benefit of jumbling all of these things together?

You’re essentially suggesting to group together someone with a reduced sense of smell as their only symptom and someone bedbound and completely dependent on carers with severe ME/CFS. LC is already a mess - why expand that to ME/CFS?
MelbME said:
To get ball rolling, here's a list I've heard/seen:

Post-Infection Conditions
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They aren’t all post-infectious
MelbME said:
Post-Acute Conditions
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What does that even mean? Do you want to include post-acute stroke as well?
MelbME said:
Post-Acute Energy Limiting Conditions
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That implies speculative pathology.
MelbME said:
Post-Infection and Energy Limiting Conditions
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See above.
MelbME said:
Post-Infection Fatigue Syndromes
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Why make fatigue the cardinal feature?
MelbME said:
Post-Exertional Malaise Conditions
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Many with LC and POTS do not have PEM. Besides, most people don’t know what PEM is.
MelbME said:
Energy Limiting Chronic Illnesses
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Implies speculative pathology.
 
Just throwing some ideas out, assuming there would indeed be a benefit to an umbrella term.

As Utsikt says, anything with "energy limiting" is probably too speculative at this stage. Unfortunately "function" is tainted by the psychosomatic people and medicine more generally with their "functional" coded terminology, so "dysfunction" is probably not useable.

Also speculatively at this stage and I don't know if you'd agree Chris but to me the 30,000 ft view might suggest something that somehow emphasises or lands on underlying immunometabolic dysregulation. But that's going to be inevitably clumsy and wordy.

So alternatively, without trying to invoke mechanisms, maybe there's a way to workshop something out of the (also stupidly tainted) "medically unexplained symptoms" base term. It should probably emphasise an acquired nature (vs congenital), but not necessarily post-infective: eg as you allude to somehow we need to work out how POTS can also develop after mild traumatic brain injury (presumably some sort of neuroimmune response → pathological neurovascular effect).

MelbME said:
I'm not suggesting a term that makes them all sound like the same condition, just something that ties us together to bring together a greater mass of interest.
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Maybe you could try something like:

Acquired syndromes with currently undefined mechanism
 
ME/CFS would include all those conditions to some extent. Some people with long Covid develop a pattern of symptoms that are indistinguishable from ME/CFS and it appears a proportion of people with ME/CFS (whatever triggered it) also have POT.

If the symptom pattern is covered by ME/CFS, I don't see any reason not to call it that.
 
NelliePledge said:
with gradual onset ME/CFS it’s not really possible to pinpoint a specific or significant acute trigger
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Yes, sure. I was just trying to say that a proportion of people with ME/CFS associated with Covid, as well as all the people who got it before Covid, have POT.

It might well be useful to identify people with Covid-ME/CFS in trials, but if they meet the diagnostic criteria they can be said to have ME/CFS. They don't need a different label or an umbrella term.
 
Kitty said:
Yes, sure. I was just trying to say that a proportion of people with ME/CFS associated with Covid, as well as all the people who got it before Covid, have POT.

It might well be useful to identify people with Covid-ME/CFS in trials, but if they meet the diagnostic criteria they can be said to have ME/CFS. They don't need a different label or an umbrella term.
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I wasn’t addressing your post @Kitty just highlighting that some of the suggested overarching descriptors don’t cover all people with ME/CFS
 
Utsikt said:
What would be the benefit of jumbling all of these things together?

You’re essentially suggesting to group together someone with a reduced sense of smell as their only symptom and someone bedbound and completely dependent on carers with severe ME/CFS. LC is already a mess - why expand that to ME/CFS?
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To tie disparate groups together for a larger mass of interest for researchers and clinicians.

Not trying to merge the diagnoses here.
 
Kitty said:
ME/CFS would include all those conditions to some extent. Some people with long Covid develop a pattern of symptoms that are indistinguishable from ME/CFS and it appears a proportion of people with ME/CFS (whatever triggered it) also have POT.

If the symptom pattern is covered by ME/CFS, I don't see any reason not to call it that.
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Because clinicians and researchers still silo to the disease of speciality.
 
If you don't want to be wrestling wiggly worms back into a can and fighting infuriated nomenclaturists at every turn, you need to choose something with near-zero-specificity and no emotional cadence. A real eye-glazer.

Something like: related acquired illness grouping.
 
MelbME said:
To tie disparate groups together for a larger mass of interest for researchers and clinicians.

Not trying to merge the diagnoses here.
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One question is whether this is something we want to happen. More interest in ME/CFS is likely a good thing, but what we really need is well run, well powered studies with that focus on the people most likely to have the same underlying pathology. Even if the diagnoses stay separate, there is a risk that more funding and interest in a general "acquired infection related conditions" does not help produce studies that give us an understanding of what is going wrong in ME/CFS.

However, if it would help, then I don't think the name has to be a perfectly accurate representation about what we know about the condition. We know that not everyone in these groups has the same underlying pathology, so at this stage the name should just be whatever is most useful in getting us to knowing the underlying pathology the fastest.

A name that is very broad won't be useful in helping attract interest and researchers. Something like "Acquired syndromes with currently undefined mechanism" is so broad that it says nothing about the problem. It also includes many many people with issues that have very little or no resemblance to POTS, ME or Long Covid. I am honestly fine with "post infectious conditions" as while not everyone with ME and POTS is post infectious it is a relatively common feature of these diseases and something that people do empathize with. But given there won't be agreement on a name it might cause more issues than it solves.
 
Hi @MelbME , the term that has currently establlished itself in the US and amongst some patient communities is IACC (Infection Associated Chronic Conditions), in Germany it is Postinfektiöse Erkrankungen, which is equivalent to PAIS. We've had very lengthy discussions on S4ME on whether we think that is good. See for instance this thread or this post and the discussion.

I can understand researchers wanting to have easier paths to funding by some means of politically combining things. That is fair. If one has to write about some larger problem by using some combination term to get a grant here and there, nobody bats an eye, write whatever gets you the grant. But thinking this somehow breaks up silos in a meaningful way seems completely wrong to me. I'd be happy for ME/CFS researchers to have a closer look at GWI or Post-Ebola to see if nerve problems or chronic viral infections make sense in a given context but the answer may even likelier by lying in connections where nobody has thought to look. But what these approaches often simply do is group together conditions that are all contested and often have no meaningful connection (you're also not combining these conditions with AIDS, MS, GBS or Reiters which are all infection associated but rather with things like Lyme Disease, hEDS, MCAS etc), that's it and the quality of research in all those field has often been historically poor and they have all been psychologised which just means you typically end up with mumbo jumbo. I don't care if researchers try to draw connections between ME/CFS and LC or rather ME/CFS and narcolepsy as long as the thought process is sensible. I don't care if at a conference there are talks are about POTS or rather Post concussion syndrome as long as things are thought through.
 
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MelbME said:
To tie disparate groups together for a larger mass of interest for researchers and clinicians.
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Doesn’t it have just as much chance of muddying the water and contusing pateints, researchers and healthcare professionals? We have so little understanding and have faced so much misunderstanding and misinformation I really don’t see the value of bundling them together in this way.. In fact it’s something I see as a damaging trend just as we are starting to get some clarity around ME/CFS.
 
MelbME said:
To tie disparate groups together for a larger mass of interest for researchers and clinicians.
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I agree with Utsikt. This seems backwards to me. If you have a group of overlapping categories as in a Venn diagram and in human disease, scientists and clinicians are interested in understanding the basis of the specific categories, not some arbitrary muddling of several categories.

These umbrella terms appear to be popular recently, as part of a tendency to reduce science to sound bites. That may suit politicos who like to grab the grant money but it seems to me the best way to get nowhere.
 
hotblack said:
Doesn’t it have just as much chance of muddying the water and contusing pateints, researchers and healthcare professionals? We have so little understanding and have faced so much misunderstanding and misinformation I really don’t see the value of bundling them together in this way.. In fact it’s something I see as a damaging trend just as we are starting to get some clarity around ME/CFS.
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Especially because "Long-Covid" initself seems to already have been an unhelpful umbrella term for researchers trying to understand pathology which only seems to have confused them.
 
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