Links for Learning to live with ME/cfs

My goal is to have a collection of patient knowledge that is accesible to as many people as possible and covers as much of our collective knowledge on treating ME/cfs as possible.

ME/cfs

Pacing is the best way to manage your energy and reduce symptoms. You can learn about it in the pacing guide.

Tools and aids can help you reduce how much energy you spend. This energy can be used for other things instead. Do save energy on tasks that have to be done so you can do more of the things that you want to do and that better your quality of life. See the list of aids. In the back of this list are is also a list of apps to use for ME/cfs.

A tool that can really help people pace better is a smartwatch. See the smartwatchpacing guide for much more information.

POTS/Ortostatic intollerance

POTS and/or OI are often comorbid with ME/cfs. POTS can cause PEM. If standing still and sitting for a while gives you PEM you may want to try a Nasa Lean Test at home. I have a POTS starterguide in dutch that I will be translating in the future. On my shared drivefolder I have a few documents on POTS.

MCAS

MCAS is also often comorbid with ME/cfs. It can mess with your heart rate and make POTS/OI worse. A lot of people with ME do not have severe MCAS symptoms but do find MCAS medications and other interventions helpful to keep their POTS and therefore also their ME under control. See mastcell action's Comprehensive Guide to MCAS for Primary Care Physicians and their self management toolkit to understand how to avoid triggers.

In short you want to avoid triggers and as a part of that adjust your diet, try medications, supplements and lifestyle adjustments.

Alternative treatments

There a a ton of alternative treatment to try. I have made a list (in Dutch but most programs are English) of as much as we as a community could come up with. I would personally recommend being good at pacing, having your (possible) MCAS, POTS and potential other comorbidity's under control and trying ME/cfs supplements and medications like LDN before trying expensive alternative treatments. I provide this list because I don't like it when people jump on the first thing they come across. I want you know your options before spending a boat load of money (and energy). You can find the list here.