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

Trish said:
Thanks for the replies.
Your work on all this looks important. Are you planning to publish anything soon about your plans for a package of tracking and outcome measures for ME/CFS? This work looks really useful, especially as you will be testing it on patients along with biological testing.
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Thank you, we have made a more concerted effort in the space of developing tools needed to improve research on ME/CFS. I think FUNCAP is an example of how researchers are needing these tools, that has spread like wild fire, many researchers are using it already and it's not yet officially published.

Publish an article on our plans? We could but I hadn't put plans in to do that. We are planning on a systematic review of all blood biomarkers that have been found to be different in MECFS vs HC. The purpose was to make sure we test them.

But maybe a paper on devices and surveys for ME would be useful. It has taken us a lot of time to identify the ones we think are the best.
 
Are you aware of or in touch with people researching the Visible app that uses HR and HRV monitoring as well as symptoms and FUNCAP? I'm not up to date with what they are doing, but I understand Visible provides a morning score for the coming day based on data.
 
MelbME said:
So it's interesting that you say that some patients are especially bad in the morning but improve over the day, they would obviously struggle with a morning day predictor.

Do you think you can predict the day based on how you feel when you wake?
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I can't speak for others, but I'm one of those people who feel worse after waking up. However, if the day is going to be a "bad" one, I feel even worse after waking up that morning than after waking up on an "OK" day. The difference is pretty noticeable. It is basically the very first thing I notice when I open my eyes, that this is going to be one of the "bad" days as I feel even more awful than normally.
 
MelbME said:
Do you think you can predict the day based on how you feel when you wake?
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Not able to speak for others, but I can't. I may wake up feeling much worse than usual, yet two hours later feel as well as I ever do. Or I can get up feeling not too bad, but later have to cross things off my 'hope to do today' list, because the usual improvement didn't happen or I got worse as the day went on.

It'll vary between individuals, of course, but it's still a really useful thing to do. It may pick up differences between subgroups, or tell us something we didn't anticipate.


On a different topic, are you planning to do urine analysis as one of your tests? I get the impression this isn't done all that often, and we might be missing an opportunity. Recording volume and frequency themselves might be too much to ask of participants, but I think it's an exercise that needs doing in at least some studies to track any changes during PEM.
 
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Trish said:
Are you aware of or in touch with people researching the Visible app that uses HR and HRV monitoring as well as symptoms and FUNCAP? I'm not up to date with what they are doing, but I understand Visible provides a morning score for the coming day based on data.
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Yeah I'm aware of visible. I think they try estimate capacity in the morning right? Sleep data i think. I'd be looking broad symptom data but it's not a bad idea to test their process out.
 
Kitty said:
Not able to speak for others, but I can't. I may wake up feeling much worse than usual, yet two hours later feel as well as I ever do. Or I can get up feeling not too bad, but later have to cross things off my 'hope to do today' list, because the usual improvement didn't happen or I got worse as the day went on.

It'll vary between individuals, of course, but it's still a really useful thing to do. It may pick up differences between subgroups, or tell us something we didn't anticipate.


On a different topic, are you planning to do urine analysis as one of your tests? I get the impression this isn't done all that often, and we might be missing an opportunity. Recording volume and frequency themselves might be too much to ask of participants, but I think it's an exercise that needs doing in at least some studies to track any changes during PEM.
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Have you used visible app to predict your day?

Does it do a better job than you at predicting your day?
 
MelbME said:
Thank you, we have made a more concerted effort in the space of developing tools needed to improve research on ME/CFS. I think FUNCAP is an example of how researchers are needing these tools, that has spread like wild fire, many researchers are using it already and it's not yet officially published.

Publish an article on our plans? We could but I hadn't put plans in to do that. We are planning on a systematic review of all blood biomarkers that have been found to be different in MECFS vs HC. The purpose was to make sure we test them.

But maybe a paper on devices and surveys for ME would be useful. It has taken us a lot of time to identify the ones we think are the best.
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Speaking of... the FUNCAP has just been published. Hopefully that makes it more visible to other researchers resulting in more widespread use

For the same reason I think it would be good if you could publish on your combined approach (which looks promising, looking forward to seeing more detail)

I suspect many researchers end up using the hopelessly inadequate Chalder fatigue scale just because they happen to see it used in other studies, it sort of feeds on itself. So the more often better alternatives turn up in the literature the more likely researchers will stumble across them and use them, especially if the better alternatives can be cited and eventually meta-analysed

Re mornings and predicting the day, I can't predict a thing on waking up. Unless I haven't slept at all, as in zero sleep which only happens with bad PEM, I feel at my least bad first thing. I go downhill later in the morning or in the afternoon or, on rare occasions, not until early evening. All totally unpredictable at time of waking. Yet I can't shake the sense that there are some hidden patterns, I just can't find them. HRV and HR readings seem to reflect the previous day/s but aren't predictive of the coming day (I've tried fitbit, polar and oura at various times, Visible is not available where I live).

That unpredictability relates to non-PEM periods. The delayed PEM pattern on the other hand is so distinctive I'd noticed it long before I knew what ME, let alone PEM even was
 
@MelbME

Nothing to add to the conversation, others have covered it.

Just wanted to say a big thanks for engaging here and listening.

We don't expect or want to be in charge of research decisions, to be given veto or anything like that. That is what the pros get paid to do.

But we do expect that our views and experience are taken into full and proper account in designing and running research programs. One would like to think that is the minimal standard for all medical research (at least for clinical trials, and disease specific research). But unfortunately it is very much not so in this field. If anything it is the opposite.

I would love nothing more than to be able to trust medical science to do its job properly, not have to worry about it at all. There are a million other things I would rather be doing with what remains of my trashed life than facing yet another round of this toxic soul-destroying despair-inducing shit.
 
MelbME said:
Yeah I'm aware of visible. I think they try estimate capacity in the morning right? Sleep data i think. I'd be looking broad symptom data but it's not a bad idea to test their process out
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I stopped using it two months ago. But basically they collect HRV, Resting Heart Rate, Self Reported Sleep Quality, How much activity you did yesterday, and Yesterdays Symptoms, and give you a daily score based on that.

There’s a lot of noise, and they attempt to give you a fairly precise score — so atleast for me its far from perfect, but a good score will generally mean a good day and a bad score will generally mean a bad day.

I personally stopped using it because well — it wasn’t super precise, and I could do a better job predicting just myself thinking what my symptoms/sleep/how well I paced.

I will note that I find the HRV really useful for measuring long term changes in illness (ie. looking at graph with 7 day rolling average) but I think there’s far too much noise in a daily reading to predict much with that.
 
MelbME said:
Yeah I'm aware of visible. I think they try estimate capacity in the morning right? Sleep data i think. I'd be looking broad symptom data but it's not a bad idea to test their process out.
Click to expand...
Visible doesn’t include sleep data, it asks you whether your sleep was ok/fair/poor/awful. They don’t estimate capacity, they give a rating each morning based on how stable your HRV etc is.
I actually don’t care what my morning score on Visible is, I find that I can be overcome with fatigue out of nowhere, similarly it lifts unexpectedly. In any case I’m usually committed to doing certain things on certain days whether it’s a good idea or not! It’s just an indicator, a guide.
 
Sean said:
@MelbME

Nothing to add to the conversation, others have covered it.

Just wanted to say a big thanks for engaging here and listening.

We don't expect or want to be in charge of research decisions, to be given veto or anything like that. That is what the pros get paid to do.

But we do expect that our views and experience are taken into full and proper account in designing and running research programs. One would like to think that is the minimal standard for all medical research (at least for clinical trials, and disease specific research). But unfortunately it is very much not so in this field. If anything it is the opposite.

I would love nothing more than to be able to trust medical science to do its job properly, not have to worry about it at all. There are a million other things I would rather be doing with what remains of my trashed life than facing yet another round of this toxic soul-destroying despair-inducing shit.
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Thank you for welcoming here and providing such useful feedback.

I agree that patient discussion in project design of inception is really important, especially in this disease because it's really defined by patient experience. I will say though that patient advisory work on research generally is at its infancy. I think ME researchers probably listen to patients more than most other fields. Most other fields listen to clinicians. At least that's what I've noticed.

Even now I think the patient advisory input is limited, often people get advisors once the project has been organized and then there is limited impact. Discussion really needs to happen before projects begin.

Then there's the issue of which patients you talk to. ME patients have broad opinions on what should be researched. I mean in our lab group we have 2 people with mild ME and a clinician that cares for patients. I speak to patients or carers weekly. And I know the projects do capture negative comments, so you might listen to some patients and still get it wrong with others. Though I completely understand this.

One thing I've noted is how well researched people are on this forum. I also like that people are not just agreeable here, I find its very important to really challenge ideas. This would be a great place to vet or generate project ideas. I wonder, has this ever been done here in a thread? I'd be happy to read them, if not, I'd be interested to facilitate one.
 
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MrMagoo said:
Visible doesn’t include sleep data, it asks you whether your sleep was ok/fair/poor/awful. They don’t estimate capacity, they give a rating each morning based on how stable your HRV etc is.
I actually don’t care what my morning score on Visible is, I find that I can be overcome with fatigue out of nowhere, similarly it lifts unexpectedly. In any case I’m usually committed to doing certain things on certain days whether it’s a good idea or not! It’s just an indicator, a guide.
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Well for research it would be very valuable to have a tool that could predict a patient day.

The waking blood samples is fasted and a 24 hour urine collection is all day, both are valuable sample types for standardising marker measures. if you were to try capture either of these on a certain day when they patient felt a certain way then you'd need to know that in the morning. This could really be accomplished only if there was a way to decently predict a day's severity before it happened.
 
MelbME said:
Thank you for welcoming here and providing such useful feedback.

I agree that patient discussion in project design of inception is really important, especially in this disease because it's really defined by patient experience. I will say though that patient advisory work on research generally is at its infancy. I think ME researchers probably listen to patients more than most other fields. Most other fields listen to clinicians. At least that's what I've noticed.

Even now I think the patient advisory input is limited, often people get advisors once the project has been organized and then there is limited impact. Discussion really needs to happen before projects begin.

Then there's the issue of which patients you talk to. ME patients have broad opinions on what should be researched. I mean in our lab group we have 2 people with mild ME and a clinician that cares for patients. I speak to patients or carers weekly. And I know the projects do capture negative comments, so you might listen to some patients and still get it wrong with others. Though I completely understand this.

One thing I've noted is how well researched people are on this forum. I also like that people are disagreeable here, I find its very important to really challenge ideas. This would be a great place to vet or generate project ideas. I wonder, has this ever been done here in a thread? I'd be happy to read them, if not, I'd be interested to facilitate one.
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There was a negative incident fairly recently with Sarah Tyson ! She’s undertaking research funded by the ME Association and has ME herself. She called us all catastrophising hystericals and said no wonder nobody wants to work with ME (paraphrasing).
 
MrMagoo said:
There was a negative incident fairly recently with Sarah Tyson ! She’s undertaking research funded by the ME Association and has ME herself. She called us all catastrophising hystericals and said no wonder nobody wants to work with ME (paraphrasing).
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Not everyone deals with criticism the same way.

Some researchers are unfairly disliked and some are unfairly adored. I think both are the wrong reasons to work or not work in this field.

If you understand what you are doing and can back it up then I see no reason to be emotional about it. Plus, there is a long history to explain why patients might feel the way they do about research and medicine.

But that is also my approach and not everyone has this same approach. I wouldn't blame researchers just as I wouldn't blame patients. We're collectively an oppressed group and it's typical to turn on each other at times. The source is a very complicated disease trying to get help in a system biased against growing fledgling research fields.
 
MelbME said:
This would be a great place to vet or generate project ideas. I wonder, has this ever been done here in a thread? I'd be happy to read them, if not, I'd be interested to facilitate one.
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In terms of generating project ideas, I believe @Hutan was putting together a tag or collection of research ideas that deserve following up or expansion? (Sorry if I've misremembered who that was! Not having a lot of luck searching the tags)

The episode with Sarah Tyson was pretty upsetting - essentially, she totally rejected the idea that research or clinical tools could cause harm in practice due to their design, despite this community's extensive experience with both. The thread ran to 50 pages, so it might be a bit too much to skim, but it's here if you want to look.

Some more successful instances of this recently might be discussions with @DMissa about the upcoming Latrobe "bottom-up" study, or @chillier attempting replication of some interesting blood findings. But I think it's safe to say that we don't get as many researchers asking for feedback as we'd like ;)
 
horton6 said:
In terms of generating project ideas, I believe @Hutan was putting together a tag or collection of research ideas that deserve following up or expansion? (Sorry if I've misremembered who that was! Not having a lot of luck searching the tags)
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Thanks @horton6.
The tag is "study idea". Tags are found on the top left of a thread. You can click on the link in this paragraph and also search on tags in the search function to see all the threads with ideas. People can attach a "study idea" tag to threads they start themselves and staff can add tags to anything. So, if some discussion of a paper generates a study idea, for example, you can click the 'contact moderator' tab at the bottom of a post and ask us to add a "study idea" tag.

I started the tag when that NIH Research Roadmap consultation was on, asking for study ideas. And this forum is full of study ideas, but when it came to write some down, it was hard to think of them. There aren't many ideas tagged yet.

We also have this thread:
What research do you want to see?
which has quite a lot of ideas listed.

If anyone wants to start a thread to discuss a particular study idea, please do. Moderators can help you find the right place for it if you aren't sure - or just make the thread somewhere and we'll shift it if it isn't right.
 
The key thing, Chris @MelbME, is to remember not to try to teach this load of grannies to suck eggs.
Or at least, by all means try - I do it all the time and I enjoy savouring the potential dents to my intellectual self-esteem that would inevitably result if I were not myself something of a granny when it comes to going down that path.

Everyone has a different skill to contribute but the collective intellectual power is something impressive.

Discussions here have a had a significant impact on research projects, if in the shadows.

Pre-discussion of projects here makes sense. Some researchers find the heat in the kitchen hard to handle but that need not worry you. Everyone here hs the same objective.
 
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