Umbrella name for ME, LC, POTS, etc

[Utsikt]

To tie disparate groups together for a larger mass of interest for researchers and clinicians.

So do you plan on including post-stroke as well? What about MS - that might be post-acute EBV with a few more steps.

The lines seem completely arbitrary to me. You might as well call it Ignored Illnesses then, but I don’t think that name is going to do anyone any favours.

 

[Kitty]

Because clinicians and researchers still silo to the disease of speciality.

I'm not sure I get why that's a problem.

If someone is researching isolated POT, or Covid sequelae that don't resemble ME/CFS, separation seems reasonable. Otherwise they'd call it ME/CFS, or something else altogether.

We need more definition, not less.

 

[Trish]

I also dislike the idea of grouping conditions according to what seem to be arbitrary criteria. Long Covid is an unhelpful name because it encompasses too many different problems that appear to have been triggered by Covid infection that may have little or not overlap in pathology or symptoms. It's already too big an umbrella.

ME/CFS was plagued for decades by being lumped in with multiple versions of chronic fatigue, with no requirement for PEM or even for a range of symptoms other than fatigue. It allowed the Wessely, Sharpe, White psychs to own the condition with awful consequences for patients and for research.

@MelbME, can you explain more about why you think such a grouping is necessary?

 

[bobbler]

do we know if this need is for holding things like conferences or creating journals etc or the idea that clinicians or researchers get slowly more specialised starting with a bigger grouping eg of genetics conference or research techniques into say 'rheumatic diseases' or 'upper limb orthopedics'?

I'm trying to think what it is that level of grouping benefits from in order that I can think what might then be in said grouping and then what might be the commonality.

I can sort of see how for other illnesses there might be clinical areas and types of science that aren't applicable at all then a hot-warm-cool on others and within those specialisms of techniques or areas like haemotology there might be other closer groupings from which news and ideas can be informative to try out or adapt or take on board for other illnesses. And that you eventually at some point in a career mightn't be a specialist in a certain technique only in x illness but also not doing it for everything/all illnesses so it forms part of a 'funnel'.

BUT Yes my initial reaction was trying to be understanding but also feeling despairing of all the issues that come from it and the lack of good solution in being bucketed and what we might be joined up based on and the red herrings that might cause or nicknames it ends up with etc.

I don't even fully understands what POTS is other than knowing it is heartrate going above a certain number on standing etc but what causes that and how debilitating can it be for those who don't also have ME/CFS I don't know. And whether it is related to eg other forms of OI.

ANd long-covid is currently defined by it having been covid where ME/CFS spent years not caring what caused it (just a claim GET/false beliefs CBT cures it) so we've ended up with polar opposite data-collection and groupings being pushed on us making for it being really interesting if you just mix groups.

I guess there is something 'exertion-related' about all 3 if we are specific in separating off only the relevant post-covid conditions into it. But I don't know whether they have some of the weirder stuff I think ME/CFS is vs the assumptoin most have that we are all just fatigued and slow all the time rather than it meaning we can be over-exerted and then unable to sleep as well as unable to function and so on.

Is that metabolic? It feels so in my understanding but I don't know that technically enough even to debate that on ME/CFS nevermind the conditions I haven't experienced.

On the acquired illnesses type 'broad inoffensive label' front or even one that is more about situation and politics, I note there is a development: https://www.s4me.info/threads/draft...-to-those-with-incurable-brain-tumours.49187/ on 'orphan diseases' (name given for ones categorised as individually rare, but then altogether a big number of people have) - which I have to think on whether that indicates the attitude difference when the name was chosen more kindly, or just that if we got called a name like orphan that would have also been colonised and said with such stigma it would have its lay meaning twisted. But it says it all that bps boldly got away with things like 'contested' and 'MUS' and 'functional' (which on the surface doesn't so became used as a code word for persona non-grata)

 

[Nightsong]

Re "IACCs" - the term was actually made quasi-official in the US in this National Academies publication:

Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: Proceedings of a Workshop (2024)

Unfortunately I think it is rather counterproductive for the same reasons I gave in this post from early 2025 on Solve's use of the term. "Umbrella" terms are best avoided.

The first question I had when I saw the term was: what illnesses are they including in the concept of "IACCs"? If you take a look at Table 1 in Solve's paper, you see the list: Long COVID/PASC, ME/CFS, fibromyalgia, post-treatment Lyme, POTS, MCAS, EDS and GWI.

The first problem is that what these conditions have in common isn't that they're infection-associated (fibromyalgia isn't, EDS either refers to one of a number of Mendelian connective tissue disorders or the type III polygenic hypermobility, no real evidence for the nature of the trigger in GWI, many cases of ME/CFS aren't infection-associated). They're not suggesting an institute that would include, say, Guillain-Barré syndrome and reactive arthritis - both are "infection-associated" but no-one would think of grouping them together in a similar way let alone grouping them with ME/CFS, fibromyalgia, etc. In fact the only thing the conditions on Solve's list of "IACCs" all have in common is that they're poorly understood or defined & sometimes psychosomatised.

I think it's counterproductive firstly because there are many "infection-associated" conditions where the link to infection isn't at all the most interesting or salient feature, and also because we've been trying to define ME/CFS quite narrowly, around the concept of post-exertional malaise & so forth and Solve are working against that by trying to lump ME/CFS into a broad category containing a wide variety of often poorly defined syndromes encompassing all manner of unexplained symptoms.

I suspect there may have been political reasons for introducing this concept (trying to establish a link to COVID and the increased funding for infectious disease research) but it's not very well thought through.

 

[Utsikt]

Are we going to include cervical cancer as well because it might be related to HPV? Alzheimer’s and Parkinson because the rates might go up due to infections? TB? HIV/AIDS? Polio?

I’m going to stop listing examples now.

I understand the desire for solidarity with other people that are sick and often neglected. But I don’t think we are actually helping anyone by using umbrella terms that will add to the confusion that’s already there.

I also, to be blunt, don’t want to be associated with many of the fringe physicians that operate in the realms of POTS, MCAS, hEDS, etc. They are not making it any easier to make the case that ME/CFS is a serious diseases that has to be taken seriously.

 

[hotblack]

In terms of lobbying and working with politicians or even in sear hing for funding I think it’s potentially counterproductive and very risky. Charities and some others seem to think there is strength in numbers or something and I can see the attraction when there are allocated pots of money to bid for if things meet certain criteria. But I am sure it will confuse people who already have little understanding of the problems or even give them an easy out of pleasing a certain perhaps vocal groups while ignoring others and ignoring some real harms.

It reminds me of the tactic being taken by the health services team of ‘oh well if we work with these clinics doing rehab for people with Long Covid we can get support for people with Severe ME/CFS through that later’. How? That’s never explained and it hasn’t worked in the past.

Working with other groups for other conditions can still be good and useful. But I don’t think we need any umbrella terms to do that.

 

[Utsikt]

What happens when all of the IACI (or whatever it’s called) money goes towards only studying allergy symptoms (branded as MCAS) or how to get people that struggle a bit 3 months after covid back to work faster, instead of trying to figure out ME/CFS?

The funding people will say «we already gave you guys loads of money».

 

[EndME]

What happens when all of the IACI (or whatever it’s called) money goes towards only studying allergy symptoms (branded as MCAS) or how to get people that struggle a bit 3 months after covid back to work faster, instead of trying to figure out ME/CFS?

The funding people will say «we already gave you guys loads of money».

I can imagine that there can at times be opportunities for more ME/CFS funding via these avenues. Germany has just shown that. I think it is likely they are going to get more money for ME/CFS research via the IACC approach then via the ME/CFS approach. SequenceME is also including a LC group. I think the worries are slightly different ones, more of the sort where RECOVER spends infinite resources on umbrella stuff without thinking.

 

[Hutan]

I agree with the concerns others have expressed. I think the right term does depend on your purpose and specifically what conditions you want to include in the group. I think we'd need more information about the purpose the term would be put to, before we could suggest a suitable term with any confidence (or indeed endorse the aim of the grouping).

I'd like to know what you think is the best Umbrella term for ME/CFS, Long COVID, POTS?

For example, if the NHMRC was thinking of using a wider term for the forthcoming ME/CFS guidelines, so that it could include things like Long covid and Q fever fatigue syndrome, I'd say no.

Long Covid is a mish mash of things, including ME/CFS, that have different pathologies and require quite different management and so it's not useful to have an umbrella term that folds in all of those things. If someone has ME/CFS symptoms after Covid-19 and no other obvious cause for the symptoms, they have ME/CFS. Q fever fatigue syndrome is a type of ME/CFS.

POTS is, I think, simply a name for conditions that involve an unusually large heart rate response to be being vertical. If someone has POT and ME/CFS symptoms, they probably have ME/CFS. If they have POT without ME/CFS symptoms, then there are a range of possible causes, and, as for Long Covid, it's probably not very useful most of the time to group those conditions together.

I think your question is a bit like asking for a common term for all citrus fruit, all things that are orange and all round things. Nothing that is comprehensive is going to be useful in terms of being discriminating. There is no good answer.

 

[Kitty]

I can imagine that there can at times be opportunities for more ME/CFS funding via these avenues.

But most funding applications are to answer specific questions. Which means they usually have to be disease-specific.

We already know that no pool of ringfenced ME/CFS funding is forthcoming in the UK, and that's arguably justifiable. If you create those funds you just end up attracting people who're good at getting grants and talking up their theories on X. It doesn't necessarily mean they're good at running trials or formulating insightful questions.

 

[EndME]

But most funding applications are to answer specific questions. Which means they usually have to be disease-specific.

Germany has just allocated funding specifically for IACC. Netherlands has done something similar. It's presumably a lot easier to get ME/CFS funding out of that pot then ME/CFS funding from general grants. Presumably if SequenceME was based in Germany it would get funding, Fluge and Mella would have no problems either. The question here was specifically about NZ/AUS, where I don't know the current situation. I understand the concerns about the umbrella terms and as my posts quite clearly illustrate am generally against them, especially when it comes to the illusion of breaking silos or somehow advacing the field, thinking inside the box or getting the right people involved, but I also appreciate that what you write into grant proposals isn't necessarily how you think things actually are.

 

[rvallee]

I don't think there is a good answer. Anything hinting at pathology is a non-starter, so is anything that can be co-opted to mean the opposite by psychosomatizers, who will co-opt anything that gets traction, thus cancelling out.

The most common, natural term I have seen is chronic illness. It's not great. It's not terrible. It's neutral. It's descriptive of the problem "illness" and its nature and most problematic feature "chronic".

I don't think we can do better than this. It has the benefit of not being co-optable for psychosomatization because their entire shtick is that it's not illness, that it's different, and that it's not chronic either. It's probably the best we can do simply because anything better would get bastardized anyway.

Ideally a good name should avoid any of the pitfalls by simply being neutral, hence why many old diseases are named after people or places, but that's been cancelled. For reasons that aren't entirely wrong, but create the immense problem of making some major issues un-namable, and thus unworkable, because if it can't be named, then how is anyone going to even agree on what to work on?

So we can't improve on this. The best we can do is to have a name that is recognizable for what it means. It could be called shamwow for all that it matters, as long as people know what it refers to, but that's not realistic, as the process of going to "this is named shamwow now" has to work with "well, what is this this you talk about?"

Chronic illness includes a lot of other conditions with no pathological overlap, but when you look at the challenges and pitfalls they face, they are the same as ours for the most part, the only exception being how seriously medicine takes them. I don't think that should be a defining feature, since it's not a feature of the conditions but of their perception and competence within health care.

Most of those other illnesses are autoimmune, and while the jury is still out, if those (LC, ME/CFS, POTS) illnesses turn out to be something like that, they wouldn't be 'classic' autoimmune, so perhaps "non-autoimmune chronic illness", or some version of that, is just about the best we can do, but ideally not quite as direct, as it might simply be a currently-unknown mechanism of autoimmunity.

 

[Jonathan Edwards]

Germany has just allocated funding specifically for IACC.

I suspect that to the funders IACC just means Long Covid (but we had better give it classier name) plus to be inclusive and politically correct and not upset those noisy ME/CFS people, ME/CFS sort of stuff. It is a hopeless label in the context of a recent pandemic that is still giving people long term problems - with no way of knowing how that will pan out over the time of the project - and which pretty much everyone has contracted, whether or not they had a positive test.

Reiter's syndrome and rheumatic fever are IACC but presumably nobody wants to include them. A good slice of ME/CFS isn't as far as we know. I suspect that it would have been better to study unexplained prolonged disabling symptoms since the arrival of Covid 19.

By May the situation will quite likely have changed. There might be a new pandemic or Covid might finally fizzle out with warmer weather.

 

[Utsikt]

I can imagine that there can at times be opportunities for more ME/CFS funding via these avenues. Germany has just shown that. I think it is likely they are going to get more money for ME/CFS research via the IACC approach then via the ME/CFS approach.

I think Germany uses «post-infectious diseases»

SequenceME is also including a LC group.

Do we know the inclusion criteria? I know they use the phrase LC, but now how they operationalise it.

Germany has just allocated funding specifically for IACC. Netherlands has done something similar. It's presumably a lot easier to get ME/CFS funding out of that pot then ME/CFS funding from general grants. Presumably if SequenceME was based in Germany it would get funding, Fluge and Mella would have no problems either.

We can speculate all we want about what might have happened if some researchers had different nationalities, but there is mo guarantee that the German approach will produce any valuable or pivotal data.

The grants might have different names, but so far it seems like they are intent on funding the same old focus areas within those names, so in that respect the names are irrelevant.

We don’t just need a strategy to make funds available to ME/CFS researchers in general. We need funds to be made available for the right ME/CFS researchers, the ones with ideas that at least have the potential to pay off.

There is also a substantial risk that getting widespread funding of studies for the sake of doing studies now might make it more difficult to get funding in the future if none of the current work pays off. The funders will be able to say that they have already spent money on it, with little or nothing to show for it. It might cause a future winter of ME/CFS funding, for example. Even more things to take into account..

 

[EndME]

I think Germany uses «post-infectious diseases»

Which is understood to be equivalent, in the case of Germany maybe with a bit less of Lyme then in the US and less POTS than in the UK but maybe some extra Post-Vac. When people talk about PAIS or IACC they all tend to roughly mean the same thing. Certain conditions we can all think of but not the other ones that aren't contested like MS, Reiters, GBS or others.

So we can't improve on this.

Why not? For example by not putting everything under one label when trying to identify pathology, for example in the case of LC mixing anosmia with ME/CFS?

The grants might have different names, but so far it seems like they are intent on funding the same old focus areas within those names, so in that respect the names are irrelevant.

I would expect so and probably some people doing nothing but looking at off-label lists! But the point that I was making was that regardless of what we think of Scheibenbogen's research I would expect more money to go into that bucket, rather than studying allergies. I agree that the problem is the type of researchers rather than the money, and we've already seen that the amount of funding is irrelevant if you don't have the right people on board. I'm not suggesting the German approach will be useful, quite the opposite. I'm not expecting anything but I don't think it is accurate to suggest that the money will be spent studying allergies or that less funding is available in the future. The money will go to the same people as before and if one gets extremely lucky some smart new people.


To be clear: I'm not suggesting the German approach, nor to use umbrella terms as suggested for example by SOLVE of what we have seen similarly elsewhere. But I also wouldn't be worried about less funding when it already doesn't exist, my worry would more so be something along the lines of destroying any hope of getting sensible research.

We don’t just need a strategy to make funds available to ME/CFS researchers in general. We need funds to be made available for the right ME/CFS researchers, the ones with ideas that at have the potential to pay off.

Definitely! That is the key problem or more so getting the right researchers that are not working on ME/CFS into ME/CFS.

 

[Ravn]

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.

Even if it’s not your intention to make everything sound like the same condition there’s a very high risk of exactly that happening. There are at least two groups deeply invested in the idea that a whole bunch of syndromes are all more or less the same illness and/or occur together in the same person because of shared pathology: the transdiagnostic functional BPS crowd on the one hand and on the other hand some prominent patient advocates and ME doctors. If they think a new umbrella tern suits their purpose they’re going to adopt it and apply their own definition to it, never mind what you intended it to be

Also, if all the included syndromes are highly stigmatised and misunderstood I don’t see any prospect of strength in combined numbers. If anything the opposite is more likely: stigma+stigma=even more stigma and confusion+confusion= even more confusion. Which is unlikely to be persuasive to research funders

Because clinicians and researchers still silo to the disease of speciality.

There can and should be tactical cooperation on a case by case basis where it makes sense for a specific matter or research question. But the silos that need breaking down are not between ME/CFS, LC and POTS. The silos we would benefit from breaking down are between accepted diseases like MS or diabetes or whatever and contested syndromes like ME/CFS, as demonstrated by LC where researchers with a great variety of expertise flooded in but failed to look at the contested syndromes before jumping in

I very much doubt anyone can find an umbrella term to break down that sort of silo. Researchers studying accepted diseases would baulk at being drawn under it and understandably so since until we have something more solid on pathology they would see no clear reason why this or that accepted disease should be lumped with ME/CFS

A more promising strategy would be to narrowly focus on some specific pathway suspected to be relevant in both an accepted disease and in ME/CFS and propose a study comparing cohorts. That would (slightly) boost numbers and credibility and involve researchers currently outside the ME/CFS field

 

[Sean]

For example by not putting everything under one label when trying to identify pathology, for example in the case of LC mixing anosmia with ME/CFS?

This may not be the best example. When I got sick among the first symptoms I had were changes in basic sensory input, including smell and touch. Everything just felt different, in a roughly comparable way to when you have a bad flu or a fever.

Those changes were immediate, often subtle & variable, and have not gone away.

 

[Sean]

I am also in the camp that is very wary of lumping different labels together. Sure there might be substantial advantages in numbers, but as the history of all this shows there are also extreme risks, as noted by others.