Chris Armstrong - Melbourne ME/CFS researcher, research updates and general chat

I think your second to last line is important. Over decades there have been very few spaces in time where I have had any control over either committments or exertion caused by others. I live from need to need really. And barter tasks that others would deem as essential with each other. Like tooth brushing vs talking to others, showering eventually becomes so needed you have to drop other essential stuff for days in order to make sure that gets done by somehow creating a window of energy big enough.

People just don't want to hear of your severity and offer drop-in-the-ocean fixes that work only for them, and explaining takes your energy only as they if they listen at all do so with cynicism.

I throw this in because it's something to be aware of when talking external validity. You couldn't throw someone like me into your sample if you are looking at patterns (?) of people without silly commitments vs their illness. But on the other hand we exist and might as well be measured to show the impact. But it has to be a way that will open people's eyes and not be received with 'perception' suggestions.

I don't know how common it is to be in my situation vs daily routine. I guess it's common people find the world doesn't really want to hear about your needs and so different levels of severity and other additional illnesses and appointments or work committments just have to be fit in - so a daily basis just doesn't happen much rather than working over weeks or months with radical rest and PEM. Some people might have environments that control their health like neighbour/building work issues, so when they rest is controlled by that (and likely isn't enough). So there is another dimension to anything that can measure things.

I don't get to have any kind of day-based routine as I'm always in a survive between the urgent appointments routine which is a longer time accounting period. I don't have an app as I don't get those choices currently (if I don't go for my B12 regularly I can't even watch a screen for 10mins, nevermind conversations etc), and worry that it'll just tell the world I'm a weirdo with no routine as if that's the cause rather than the consequence.

Being able to magic a window then suffer for many weeks around that doesn't help in the way the condition works. And when the most obvious symptom looks like gibbering words (which is cognitive, not mental, but that's been reworded as if its mental health) and exhaustion (that they've reworded as if it is motivation or mental or not behaving right) and looking unwashed etc (which people interpret as 'not coping' as if it's just mental) means I'm terrified of other people and their bigotry.

People don't realise the issue can be so exhausted your body can't go into rest, so interpret it as some form of self-neglect (when you can't brush your teeth or eat anything but crisps for days after a massive exertion) or misbehaviour or madness.

So it would be great to start undoing their awful reframing they did to prove what is actually going on eg when you turn up to an appointment and someone says 'oh we've changed rooms to up these two flights of stairs' and you've already travelled and sat and waited so are left with invidious choices (and they won't understand the consequences you predict because few believe the extent, after all you've made sure you didn't turn up stinky).

 

Anyway, I mention this not to whinge but because there is a lot that I am bartering in pros and cons when you think about how we start to measure stuff. And the complexities involved with each. Sorry that this isn't terribly organised yet as thoughts and I hope the gist comes through by some miracle.

There is also something to be said for a lot of treatment pathways would perhaps involve extra exertion anyway, like me schlepping to fit in appointments. Perhaps why I'm so conscious of the impact of travel, waiting, speaking, everything around trials. Daily routine goes out the window fast when threshold doesn't meet outgoings.

I think too subjective and it won't have the impact, plus triangulation is needed to account for inadvertent coercion. But the irony is that all the data with apps has to be organised and I don't know whether some of those are dependent on having certain controls on the lives of the people being measured over that space of time (and if you took someone like me and tried to make me routine for 10 weeks that wouldn't work either).

All I can imagine from my life I have to lead is that if I took a new medication and it helped then it does have a 'moment' which as a cynical person has been quite stand-out to me. B12 I woke the next day with a big breath and the not being able to look at a screen for 10-20 mins without migraine is resolved. Another med I didn't expect to make any difference (taken for something else completely) I suddenly wondered after 3 weeks why I felt that bit more clear-headed - harder to measure. If something improved my health overall I'm pretty sure the area of hygiene would be where would see an uptick in activity first.

Although maybe some of this might come out in the wash if we could rely on funding being endless enough (!) that research could expand to cover the varied situations people are in. And I try and think 'does it matter' if tested only on those with routines and it is a miracle drug (probably still work for me), vs other treatment possibilities.

A proper professionally done experiment using this on /including people like me so that it is validated by someone who would be listened to if they 'had the conversation' and it would back me up would be great. (eg showing how much /long appointments take out of someone, to encourage adaptations to stairs / light /journeys etc.) But me doing it alone would just be pointless and make me vulnerable. I'd love something that could finally lead to some decent advocacy.

I'd worry the advice, if these things were done comparing those 'with routines' vs those without would be like the pacing 'in theory' where the ends don't meet on 'try and pace'... but you are supported by 'being taught it's good' instead of having the adjustments to make it possible.

Because people miss the point of it being what enables (space, better support) that paced life making someone's health different. I don't know yet how to resolve that conundrum.

I was very excited by @PhysiosforME when they looked at measures of people in their natural environment at home. It would be great to have something that showed the impact of what some people are forced to do when adjustments aren't made, and some people's real life currently ie tackling from 'both ends' showing how long it can take to recover for those severe having to do these things, or even eg moderate having to try and blag doing a full time job.

And show the difference for someone in a similar position with the right support in place or not doing said exertion. What a difference things like light and noise in a hospital makes to the body. It might also contextualise measures (like apps).

On a week where I might somehow not be in PEM from or resting in order to do an appointment I tend to have catch up of lots of other things that became urgent because they had to get left during those times. Anyway I think what I'm saying is that I struggle to think of control situations and the idea of what would need to load into an app to be complete might be endless!

 

Side issue, but someone doing “something” about all the things you can’t control would be good. And I probably mean a journalist, maybe some research? On this false standard that we can rest and pace as if we live in a sealed box.
My cat can do this, because I’m his owner and I supply all his food/healthcare/toilet needs. All he has to do is eat, sleep, occasionally chase a spider or bat a toy mouse if the mood takes him. I cannot do this as I have responsibilities, benefits, bills, appointments, friends and family, neighbours and emails!

 

Such a thread on research we would like to see can be for example be found here. There's also a thread for project ideas to do with the DecodeME data, whilst it is still empty I hope it can fill up as time progresses. There's also a thread on an updated hypothesis based on data that has been gathered over the past few years.

More recently I have found the discussion surrounding POT, POTS and OI especially its relation to ME and LC not only to be very crucial but also to be very insightful. I can imagine several projects coming out of those ideas, some of which have already been suggested. I think the majority of the discussion can be found along these 3 threads: 1,2,3.

 

THIS

& THIS!!

 

I think a good example (albeit on a small scale) of a researcher coming to discuss a project here, and the involvement being helpful would be this project Open - impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults | Science for ME (s4me.info) Its not a biomedical study & may not be of interest in terms of the project itself, but as an illustration of how the process can work here, i think it's interesting.

there were some disagreements on the validity /usefulness ofthe project, but i think it demonstrates how, a researcher without (what seem to me to be) arrogance/ego defence issues, can take on board constructive comments & modify projects in a way that is IMHO likely to be of more use than had they not consulted here.

great to have you here @MelbME and its great that you welcome a forum of opinions and input that isnt just a bunch of 'yes men'.

And really, if you want to see an example of how *not to engage with patients... the aforementioned thread on the PROMS project funded by the MEA by Tyson/Gladwell et al, is a hideously classic example. If it werent so awful it'd be funny, the way she told us "dont be silly"

 

I disagree.

 

Perhaps, to be agreeable, people might be agreeable to agree to disagree?

According to Google disagreeable does not have the equivalent two meanings - only two nasty meanings.