Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

Indeed to the normal long term responsibility on care

the other issue is that the relapse term used for cfs comes from mental health/regab terminology and doesn’t use relapsing-remitting but is inferring other things

the MS example is all very well but even with that significant changes to the terminology and then it being used correctly snd having good descriptions that are used instead of eg relapsed into an addiction (in our case it is a whiff of ‘the bad habits’ of not being able to get up and get to work on time, sleep at right time as if it’s behavioural cause where that is cart before horse and has been caused by the six months before of striving to get to work on time etc) is a long way off.

I think there is room for better terms that are more accurate . I also think if we are thinking of MS as a comparator/anchor here in describing patterns for us to have a page bringing up more information specifically on the patterns in this and what it is like - as we have the PEM thing and the crashes then just about recovering to then have another crash ‘way of life’ most of us are at best forced into and told to put a smile on our face or be criticised, and the overall downward deterioration over a long enough time period there or suddenly not being able to do it eg six months seems to be the time when our mind over matter on eg GET type pushing suddenly comes home to roost with a bang.

it’s only of use anchoring if there are enough similarities and not significant opposites within this ms term vs what we would be meaning for me/cfs and it might need to be an adapted term for us (and need to be adapted anyway as they are just calling actual deterioration ‘relapse’ currently as it is at the moment and not using it to mean just those with relapsing remitting who have a crash)

I’m cynical that we aren’t just obscuring still/further the really fundamental and important bits people need to understand- that ignoring our needs means we get progressively worse - just to argue another issue that isn’t necessarily either well tackled by this term

 

Yes, definitely, but it's hard to know what they are until someone studies the illness course properly.

People use relapsing/remitting because it's used in all kinds of conditions, but it means something different in every one of them. It helps with communication because there's some common understanding of what "Relating/remitting X" means—how that illness affects people, what future course it might take—even if from a purely medical point of view the term's not very meaningful.

None of this is in place for ME/CFS. There is a pattern that resembles relapsing/remitting, but it might apply to 0.8%, 8% or 18% of the ME/CFS population. We just don't know, and nor do we know if anyone stays in the pattern throughout the illness course. We can't gather the large datasets needed to define and describe how the symptoms change over time without outpatient clinics led by specialist doctors.


ETA: meant to add that descriptions of the courses of very long-term illnesses are best gathered by following people for much of their lifetime with it. We need data like that because it's hopeless extrapolating from the experience of individuals over a few years or even decades. None of us knows what delights we're in for next.

 

I’m putting this here but it can apply to a lot of topics and whilst it id good in length and getting some points across I’m sure there are others worth looking at too

it’s a short reel video noting some key things to think about re memorability - but in itself it also is good for thought on communicating things that you want to actually go in



the 4 points chosen here are:
- repetition
- association (and mentions a memory palace where you place things eg in a house to help remember them)
- novelty (somewhere you’ve seen gif the first time etc)
- emotional resonance eg resonating with peoples happy or sad mood

now what I’m not saying is ‘marketing’ but just for us to remember that the things that help understanding might well be the hallmark examples people can connect to. Like that migraine every Friday or pushing through and it being hard then suddenly bursting with sleeping three days in a row after x amount of time, being desperate to have your head supported.

Or actually doing that big picture of spectrum and how continual erosion shrinks the envelope and becomes exponential.

It’s very important we stop the siloing. Which sadly has become othering. And often feels like that ‘ME or CFS’ interpretation of ME/CFS we are starting to see getting pulled on us particularly by certain bits of establishment etc

Because that paints a picture people can relate to and makes people understand how mild is the same underlying thing that just gets worse to severe etc. if you keep not giving enough rest that it’s not overexertion fir the level of severity, for long enough. Or worse just constantly antagonise people with overstimulation and overexertion whilst saying it doesn’t harm and claiming you don’t know why they are getting worse. I don’t think we work on these issues enough.

And how whilst it is worth thinking about not swimming upstream for the sake of it uf we don’t have something that fits better actually the old terms that are misfits to the reality of the condition are an obstruction in getting that understood, and there are ways of dealing with introducing new ones vs the old that can have positive effects.

the emotional one is hard and needs more thinking on but it is important. And tough also because it relates to that of the audience which for us could be different groups eg some staff and some pwme or potential pwme etc

anyway I think we need to focus on getting the truth and picture correct and not being primed and led by the few limited bits of research certain funded people got to choose to put out there over the years putting priorities over what is most important in that picture. And / or assuming that correcting something with a more accurate descriptor or term or picture/paradigm that makes things ‘whole’/ full circle will necessarily be less communicable or we’ll-received until we have those ‘best terms’ and we’ve got the accurate picture down

sure there may be some pick your battles or take things away and work out how best to get a certain concept across to a certain audience (and maybe for some that needs to be stage-wise as per pedagogy) but I think the most important thing is everything fitting together/being coherent/working like a jigsaw into the big picture. And these inherited terms undermine that - plus having a document where we explain the rename on some of these is also a great opportunity to get some learning across of issues and where the old paradigm was ‘off’ in a way many don’t even pick up on when reading the big picture alone because they think ‘yeah I know it already, people get tired’

I think what I’m saying is that we are risking stripping out stuff that not only might be the most interesting and relatable but also the wake-up call/penny drop that it’s different from what people assume (so shoving us off to therapists to cope alone is not appropriate for a serious illness) . Nor is the model being led by which papers are out there alone, rather than using the wealth of patient experience to get the big picture and underlying issues jigsawed and then adding to those where the research stands or there are gaps due to eg method issues etc

the fact of PEM is in itself a big issue for past research for example because few studies knew if /who of their sample was even in PEM or rested when doing x or y. And because if it is a repetitious or lifestyle therapy then it will be the longer term where you’ll admit to yourself the threshold has dropped long term rather than ‘maybe I just overdid it/got a big’ etc

I think we need to be as open to saying these things exist but have been neglected by research until now is as important as where some phenomena might have done literature to review - because what’s not there (been done in research to a good quality) ie the gaps are as important to flag because they often pertain to the important things, and what has been done a lot has often been misguided in the name of trying to get certain hypotheses confirmed that don’t really fit (but the odd paper might have had other side findings that offer other points of interest)

 

I explain it like this. If you just go over your PEM threshold but then rest it off you will usually be ok. However if you go over your Deterioration Threshold then you will permanently lower your PEM threshold. The Deterioration Threshold is lower during PEM and slowly recovers as long as you don't push through PEM.

Chu et al. 2019 claims a pre-Covid prevalence of 0.76 to 3.28% which is way too high, probably because it's using the flawed 1994 criteria, the CCC prevalence was 0.1%. So I'm not entirely convinced that they were solely surveying ME patients.

 

Or step on another deterioration landmine. I did not spend 10 years pushing through PEM, but I did spend 10 years deteriorating.

 

I experience something similar. A little PEM mostly just makes symptoms flare and goes away in a couple days. A lot of PEM or repeated PEM worsens my disability, (my PEM threshold, how much I can do before I trigger PEM) and this worsening is much slower to recover sometimes never going away.

 

They explain why here:

Seems reasonable. Then they acknowledge that:

I tend to think the bigger problem is the one @Yann04 brought up above:

In Stoothoff et al., for example, the mean SF36 physical function score for each group is as follows (I rounded to nearest whole number):
59 Constantly improving
45 Relapsing and remitting
38 Fluctuating
32 Persisting
26 Constantly getting worse

SF36 physical function scores for people with very severe ME are likely to be 0 or 5.

For surveys like this that could be done on a computer or phone from bed, researchers can definitely do better at including the very severe.

 

And the irony that if you have continual decline type in the poor information situation that there has been up until now (and until whenever this changes ) then you probably are pretty severe by the time you confirm even to yourself that yes you do deteriorate from this /in this way - as it’s like measuring acceleration (which is harder than those just measuring speed)

so the ‘entry barrier’ to participate being a survey, or whatever else + the need to have such self-awareness/sureness to tick tgat box

effectively might mean who is there who could tick that box and complete that survey without the combo of the two meaning they are confirming that yes by them merely doing so they deteriorated themselves

and that’s before you think about what small number are well enough to do said survey etc