Our consumer co-researcher, @PenelopeJaneMcM, presented to policymakers in #Australia on behalf of the #FHBP community, specifically focusing on individuals affected by ME/CFS. Advocating for policy changes to better support patients' needs. @flinders @FlindersCFI @mecfs_aust_sa

I think one of the reasons pacing is so hard and takes so very long to learn for ppl w/ ME or long covid PEM, is bcs when you have those rare windows of time when you feel a little better, it conjures up a lifetime of experience you had prior when feeling better during illness meant you were getting better and that you could thus do more. You have to override this previous lifetime of experience and reign in your instinct to do more. You have to remind yourself it is an illusion/ facade. Even after nearly 4 years, when I have a day that I feel a little better, I suddenly get hopeful and think maybe the improvement will continue! But it is inevitably followed by a crash.

Experts Praise Public For Adapting To Constant Illness Without Asking Follow Up Questions

7/ The body is constantly making energy-budget decisions. The brain, heart, respiratory system, and other critical organs must remain operational even when resources are limited. The authors suggest that some symptoms may reflect an energy-constrained system attempting to preserve essential functions. In this model, fatigue is not merely a lack of energy. It may represent an adaptive signal designed to prevent further physiological disruption. Whether this model ultimately proves correct remains unknown. But it shifts the discussion from “Why won’t the patient exercise more?” to “What constraints is the body attempting to manage?”