Stanford ME/CFS Initiative: PEM Avoidance Toolkit

Andy

Andy

Retired committee member
From a Facebook post of theirs
Check out this toolkit on how to avoid Post Exertional Malaise (aka PEM/crashes)! It was created by Dr. Montoya and members of his team here at Stanford with lots of input from ME/CFS patients over the course of several patient workshops. There are worksheets to help identify your individual triggers to build your own PEM avoidance plan. Since it is often difficult to know exactly what events lead to crashes, there are also tracking sheets included to help document activities and hopefully identify possible triggers. At the end of the document there are a few case studies describing how others have used the provided framework. Hope this is helpful!
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Code: 
https://drive.google.com/file/d/1kr_OU3IHdBwl2VSgyfYNjJ4W5ltxNGok/view


They have just recently created a Facebook page - https://www.facebook.com/StanfordCFSInitiative/
 
This would have been great when I was newly ill. Life saving. However now I'm severe and realiant on care from others I simply can't organise my life perfectly and PEM is very hard to avoid when the slightest things set it off. As well as activity management we need treatments to stop PEM kicking in so hard and severe ME recognised more as being the most needy group because those case studies make life look pretty ok with pacing and accessing support etc.
 
I agree it looks pretty useful for new sufferers.

My main criticisms:
I'm amazed they don't recommend heart rate monitoring, and probably step monitoring as well. I've found these far more useful and far less of a chore than all that record keeping which I was hopeless at.

And I agree, @rustyj, that the examples are totally unrealistic. Even in my early years when I was mildly enough affected to be able (with difficulty and lots of crashes) to continue working part time and raising kids, I could not do any housework, and certainly could not have played any sport. They really need to include some who are at least moderately affected.

@Cinders66, I agree it really should at least mention severe sufferers and say they need more complex support.

And @rustyj, I've noticed this is your first post. You are very welcome, I hope you'll enjoy being here.
 
I think this a great resource to help introduce doctors to your reality. If you can get them to take interest in your case. I have observed that doctors often ignore even their own forms. It is hard to get a treatment plan or diagnosis with complex symptoms because sometimes, 15 minutes is all you get.
 
I notice that sensory overload is classed as emotional over exertion? Why? If I am in a noisy place - let's say the doctors waiting room where on the one hand I have to listen out for my name to be called but on other hand there are various conversations going on this is exhausting, but not emotional?

If I'm sitting in a moving car watching the countryside flash by is not emotional but wears me out cognitively.

Once I started to understand that PEM exists and that it was something I needed to manage I set up a plan along the lines of this. It was a bloody nightmare. I was so busy clock watching everything I did, planning to the smallest detail, writing things down in my diary it nearly sent me insane.

I ended up focussing on little else but my condition. It didn't make me better and then that became a stick to beat myself with. It stopped me enjoying the little things I could do, because I was constantly in monitoring mode & thinking my 10 minutes is up.

It may help some people but for others it could just be a stick to beat yourself with.
 
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Invisible Woman said:
Once I started to understand that PEM exists and that it was something I needed to manage I set up a plan along the lines of this. It was a bloody nightmare. I was so busy clock watching everything I did, planning to the smallest detail, writing things down in my diary it nearly sent me insane.
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Me too, and I quickly gave up trying. I didn't find that sort of detailed diary keeping helpful at all.
 
It appears they tout their patient involvement in the development of this instrument. Makes me wonder how they did on the criteria set out by Jennifer Johanneson in the article posted by @TrixieStix on Sunday.

Sorry. Don't have the brainpower to figure out how to post a link. :(
 
What I was desperate for when I got ill was a quick and easy tracker so I could work out my triggers for PEM. The only thing that worked well was a phone based symptom tracker that I customised and heart rate monitor (also synced with my phone app). All that early days stuff of filling a sheet for the activity diary was very cumbersome especially when you are in near constant brain fog. Im surprised they aren't looking at tools to help in the management of PEM?
 
Trish said:
Are there any? Apart from rest and possibly some nutritional supplements that only have anecdotal evidence to back them, so can't be recommended by reputable scientists.
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I was thinking of a tracking app for your phone? Given that OMF are into gadgets an app that synced your heart rate data with Daily symptoms etc would be useful. Various other medical charities are promoting apps to help with pacing and management. Just seems surprising.
 
Invisible Woman said:
I notice that sensory overload is classed as emotional over exertion
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Dang! You beat me to it!

Aside from their examples, I get sensory overload as a passenger in a car, especially if the speed of the vehicle exceeds 30 mph. It has nothing to do with "emotion" and everything to do with my brain not being able to process the amount of sensory information being delivered at high speed. On the rare occasion where I cannot avoid a car journey, I usually keep my eyes closed - even when I get to leave the house, I still don't see all that much of the outside world!
 
arewenearlythereyet said:
I was thinking of a tracking app for your phone? Given that OMF are into gadgets an app that synced your heart rate data with Daily symptoms etc would be useful. Various other medical charities are promoting apps to help with pacing and management. Just seems surprising.
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Ah, OK, I agree with this. I think they have definitely missed the most useful advice by not mentioning HR monitoring and tracking apps.

I was including these as ways to avoid PEM, rather than managing it once it hits. I guess it depends whether the PEM is bad enough to put you to bed for the duration, in which case all you can do is rest.
 
Revel said:
Dang! You beat me to it!

Aside from their examples, I get sensory overload as a passenger in a car, especially if the speed of the vehicle exceeds 30 mph. It has nothing to do with "emotion" and everything to do with my brain not being able to process the amount of sensory information being delivered at high speed. On the rare occasion where I cannot avoid a car journey, I usually keep my eyes closed - even when I get to leave the house, I still don't see all that much of the outside world!
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Just thought it worth mentioning that it's never a good idea to drive with your eyes closed . Sorry couldn't resist :laugh:
 
arewenearlythereyet said:
I was thinking of a tracking app for your phone? Given that OMF are into gadgets an app that synced your heart rate data with Daily symptoms etc would be useful. Various other medical charities are promoting apps to help with pacing and management. Just seems surprising.
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Not available yet but Lipkin's team has said that it will develop one
ME/CFS scientists will also work with the ME/CFS community, including clinicians and people with ME/CFS, to design a mobile app called myME/CFS that will allow them to track symptoms in response to stressors and interventions.
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https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative
 
It looks great for Moderate/Mild and Mild PwME. If this was their target audience, then it’s very useful. For Severe it won’t apply. Severe/Moderate it may apply at infrequent times. For Moderate it may apply sometimes.

I hope you can see that there is a knowledge gap when it comes to understanding the needs of Severe PwME. Even at a leading institution, with a ME Clinic, with a one year wait, it is absent. I never saw a Severe PwME at the Stanford ME Clinic. They mostly looked Moderate/Mild to Mild.

And the narrative examples, fit the exact type of PwME, I observed.
 
rustyj said:
I thought this was a very good start, however the examples are a bit OTT. They don't seem like serious cases and undermine the impact of the illness - maybe this was a commercial decision. Sport? Children? Trying showering, cleaning, cooking. Many patients live alone and struggle to care for themselves - really need to address this.
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Sorry, but I think this knowledge is sorely lacking; we need to change this.
 
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