There are 4 different experiences in this and one of them is someone actively starving to death right now from very severe ME/CFS. The response from Action for ME and MEAssociation seem weak in comparison to the life threatening utterly life changing stories above as if none of that really matters to them. Training will take a decade or more especially if it continues to be an optional training as the department for health currently plans it to be. Spinning up new healthcare provisions and professions will equally take a really long time and arguably is pointless unless trials find workable treatments.
On the one hand its great that the BBC has not used chronic fatigue syndrome and they haven't dressed these stories in a nice inspiration porn style as they always do and have done in the past dismissing the patients with some psychology, the Weasley school of psychobabble aren't quoted. But on the other hand they haven't grasped the immensity of the problem and the great scandal that underpins what has been done to ME patients and answered its own premise of why ME patients get no healthcare. Answering the why alongside what should be there like it is for every disease is what matters and it involves challenging power who say they have been investing in research for 25 years, when actually they have been investing in CBT/GET/Obesity studies the whole time and still are.
Its progress but they are still skimming along the top and not committing and really asking why it is 250-750k which ever estimate don't get healthcare and why that is acceptable for NHS bosses to say they wont deliver any. Why do we not have a good count of ME patients? Why are only about 20k diagnosed at all? Why is there no social care for ME? Why does no one know how devastating this disease is in the healthcare/social care sectors because its not new?!
