A young adult friend of a friend has just been diagnosed with ME/CFS. I want to send some advice on pacing. What is the best concise, accurate webpage or document on pacing for someone who is newly diagnosed? Thanks in advance.
This is the emerge web page there’s a 2 page handout I think they did a good job on this material https://www.emerge.org.au/stop-rest-pace
Do keep in mind that there is no "one way that fits all" for ME. I haven't checked the literature, but I expect it comes down to "learn from your own experience". For one, the exertion limit might be "walking 10 paces"; for another it might be "cycling 40 km". For one, exceeding the limits might mean a 6 month bed-bound crash; for another it might be a slightly worse next day.
I like ME Action’s 4 page pacing and activity management guide as it starts with a focus on PEM and then dedicates one page to explaining that exertion is not (just) exercise. It lists different kinds of exertion with examples which is useful for newly diagnosed people who may not realize that some activities they do are in fact draining, even those that are meant to be relaxing. http://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf
MEAction now has 3 guides. One for adults with ME, one for parents (and pediatric healthcare workers) and one for clinicians https://www.meaction.net/resource/pacing-and-management-guide/ The Bateman-Horne Crash Guide is not concise but is pretty good and has communication cards that can be very helpful during crashes or for those who are severely/very severely ill. https://batemanhornecenter.org/wp-c...sh_care/Dark_Blue_Survival_Guide_Complete.pdf
I second the Emerge handout as a good concise first introduction to pacing. Once people have got their head around the general idea of pacing they could try reading sections relevant to themselves in this much longer and more detailed guide to get some ideas about how to approach specific problems. Disclosure: I was involved in writing this, and S4ME members provided valuable feedback, there's a thread here somewhere but the final product is here: https://m.e.awareness.nz/a-guide-to-pacing-for-pwme Any recommendation has to come with the warning that there isn't a one and true and only right way to pace. In the end we all have to work it out for ourselves, for our specific situation.
Heart rate monitoring is very helpful for me, but it can be frustrating/anxiety inducing for others. For me, it helped reducing PEM episodes. I stop activities earlier to rest than when waiting for "early symptoms" like sore throat. I also decide on activities (is today a shower day or a washcloth day?) based on my "numbers". Food intolerances also show up on my heart rate. (Dammit, peanut puffs!) Plus having "objective" data is really helpful and convincing for family members, too. http://www.cfsselfhelp.org/library/...our-heart-rate-to-stay-inside-energy-envelope https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/ https://holisticcfs.wordpress.com/hrm-master-page/ (with a link to recommended devices) Facebook groups: ME/CFS:Below the threshold (English), ME - Pacing mit Pulsuhr (German)
