Seeking a Specific Resource

[Arius]

I'm looking for a resource, basically a thing a PWME can hand a therapist, a doctor, a family member, whoever, that contains all the essential information they need to get a general understanding of the illness. You know, PEM, exercise makes it worse, severity of the crippling exhaustion (aka "fatigue"), brain fog, etc. I'm sure some organization made something like this, but I just can't remember where I saw it.

Anybody know of such a thing?
Thanks!

 

[kangaSue]

Perhaps this 'Mini Roadmap' could serve your purpose;
https://mecfsroadmap.altervista.org/mini-roadmap.html

 

[Arius]

That's not quite what I'm looking for, but it's a super useful resource nonetheless - thank you!

I was a bit vague in my post, I'm actually looking for something for a fellow PWME to hand their ignorant psychotherapist, who is gaslighting them and pressuring them to exercise more and have a positive outlook etc. (Getting another therapist isn't an option for them.)

 

[cfs since 1998]

I think that doctors, therapists, and family members are all different audiences and you might need something different for each one.

For doctors (and maybe therapists), maybe David Systrom's investigative paper (https://pubmed.ncbi.nlm.nih.gov/33577778/) and the Charité Fatigue Center 2nd conference paper (https://pubmed.ncbi.nlm.nih.gov/33577778/), both free access.

You can't exercise/positive think your way out of autoantibodies, neurovascular dysregulation, and tissue hypoxia!

ME Action is also a good resource.
They have some "brochures": https://www.meaction.net/tools/

 

[Atlas]

Some more:
1. There's an "International Consensus Primer" for doctors but it's quite old now (2012) and not short
https://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf

I'm not sure if there are any later versions.

2. There is the NICE guidelines 2021 but they're quite long.


3. My favourite short version summary which I found a while ago which has the basics/introduction was the "NZ doctor" summary "How to Treat" article:

https://www.nzdoctor.co.nz/sites/default/files/2021-06/NZDoctor_030221_HTT.pdf


4. I also thought the physio-pedia article does a good job at dispelling the myths.