Umbrella name for ME, LC, POTS, etc

[Trish]

I think we should avoid emotive words like misunderstood, ignored, unexplained, under-researched in any umbrella term if we must have one. They too easily invite either dumping in the psychosomatic dustbin, or assumptions that patients are whinging again. It reminds me of my frequent misreading of 'underserved' as 'undeserved'.

 

[V.R.T.]

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.

I've been thinking about this because this is exactly what happened during my prodromal onset - everything has felt 'different' ever since, even during periods where I felt better overall there have been weird quirks of sensory input that I have had to ignore. After my definite onset and especially after my deterioration this has ramped up. As you say, basic sensory input just feeling 'off', sometimes in a subtle way, sometimes in a really unpleasant way.

 

[MelbME]

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.

It would be a name for a research society across ANZ for these conditions. Working interstate is similar to international in Australia by nature of the cities being spread out. Local collaborations are in the city but beyond that we rarely connect.

Would like to see meetings where we all get insight across these conditions. Researchers, patients, clinicians. Anyone interested in research.

 

[MelbME]

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.

It's not a term for the diagnoses of the conditions.

An example would be that in Australia we have things like the thoracic society, a meeting for researchers across a huge array of diseases and conditions related to the thoracic regions.

 

[MelbME]

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.

Potentially, if you think they'd be interested. Most of those are already apart of large research groups for those conditions.

 

[MelbME]

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.

Well most ME researchers I've met don't really know POT is separate to POTS. So I'd probably use that as an example as why we should be connected more with each other so they can learn from each other.

 

[MelbME]

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)

Yes that's exactly what it's for. To help bring researchers together across these diseases for discussion. Less silos.