Stanford ME/CFS Initiative: PEM Avoidance Toolkit

From a Facebook post of theirs

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 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.

 

This looks like "PEM" as a Lifestyle problem. How can food as an example cause PEM in a sizable group of well defined patients?

The examples are dreadful

 

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.

 

A baked potato with tuna and sweetcorn definitely caused me to experience mild PEM yesterday

 

I agree. Getting appropriate sleep will not prevent PEM either.

 

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?

 

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.

 

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!

 

Just thought it worth mentioning that it's never a good idea to drive with your eyes closed . Sorry couldn't resist

 

Not available yet but Lipkin's team has said that it will develop one

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.

 

Sorry, but I think this knowledge is sorely lacking; we need to change this.