The context for both statements is the series of horrifying accounts in England of teenage girls and young women diagnosed with ME (or CFS or ME/CFS) who have experienced, and in some cases are continuing to experience, traumatic and harmful hospital stays. (That is not meant to suggest that males cannot also be subject to such trauma, but the currently publicized cases involve females.) These situations are marked by profound conflicts between hospital personnel on the one side and patients, carers, and the experts advising them on the other.
In the case of Maeve Boothby O’Neill, who died three years ago at 27 after three hospitalizations failed to resolve her life-threatening issues, the coroner in Exeter will hold a two-week inquest beginning on July 22. The pre-inquest hearings have already shed light on the UK National Health Service’s inability or unwillingness to handle these situations in a medically appropriate and effective manner. Hopefully the inquest will reveal much more about what went wrong, and why.
After I wrote about Professor Edwards’ statement on Virology Blog, the ME Association highlighted my post and added a comment from medical director Charles Shepherd. Here’s part of what he wrote:
“I have been closely involved with several of these distressing cases. So, I was very pleased when Jonathan Edwards decided that further expert guidance was required and asked for input on the production of a protocol for hospital management of severe ME/CFS that would build on what is already in the NICE guideline and enlarge on nutritional assessment and support.
“I hope that doctors and other health professionals will now follow both the NICE guideline recommendations and this very comprehensive protocol when they have a patient with severe ME/CFS who requires nutritional support – as they may be at risk from life threatening malnutrition if this is not forthcoming.”
(Side note: Professor Edwards argues that his document is really not a “comprehensive protocol” or even a protocol at all, but simply a review of what’s already out there, combined with some suggestions. However, I think his document could qualify as a “protocol” in a broader, looser understanding of that word.)
Major disagreements in these situations have focused on nutritional challenges and the various possibilities for tube-feeding as an alternative to eating, with families demanding such alternatives and hospitals generally resistant. This resistance is often grounded in false and offensive beliefs, promoted by the biopsychosocial cabal, that ME/CFS is driven by psychological and psychiatric disturbances, not underlying pathophysiological causes. Professor Edwards’ statement was an attempt to ensure that these patients don’t starve—literally–while being cared for in medical settings or at home.
