Sometimes I just think how wonderful it would be walk down a street on a warm sunny day #longcovid #dysautonomia #MECFS #hypovolaemia #chronicillness #DisabilityRights

I would be fascinated to know your thoughts on this topic. (spoons allowing) Link to the article (voiceover available): pollypauthor.substack.com/p/… I tend to think the systemic neglect and abusive treatment of ME patients puts disproportionate pressure on affected celebrities. It shouldn’t fall on some random comedian, actress and television personality (whom I like and admire overall) to need to force doctors and politicians to finally admit the biopsychosocial theory was wrong, and that nothing will improve until the disease receives the same scientific rigor and professionalism as almost all others. That said, we are in a grossly unjust situation, navigating an gargantuan power imbalance. If someone is therefore fortunate enough to have their voice amplified to millions whilst being in the minority of those who recover, I think there is a moral question around ensuring that any information shared is correct. Otherwise, those who seek to profit off psychosomatic mistruths—who are already given disproportionate influence by the establishment—become further emboldened. In fact, it seems some healthcare professionals have already started leaping at this completely subjective, unverified story, and using it as evidence for behavioural frameworks - despite this showing the sort of scientific integrity that you'd expect to see below GCSE age. So what do you think? (please only share if you're well enough - there is no pressure) 💚