What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

I guess I agree with all of this except the ‘common sense’ part. Common sense doesn’t have to be good. There is a sense about us that they share and it’s fatal to our hopes of treatment.

 

Yes, except it looks as if we now have a situation with too many guidelines from which people can pick and choose.

I don't buy the argument that there are no resources for dealing with people with severe ME/CFS. In Exeter a physician with knowledge of ME/CFS was there. The facilities and technology for feeding support existed. A bed was found. And so on. It looks very much as if quasi-guidelines were used to deny care.

 

No, absolutely not. But whether the problem is to do with the guidelines themselves or how they're applied, it has to be approached transparently.

Denying nutrition when there are ways to supply it isn't an unfortunate omission, or an unexpected failure, or outside of what doctors can reasonably control. It's a considered clinical decision with a potentially fatal outcome. It's not hard for anyone to see why the evidence for it shouldn't be sought in the long grass on the outskirts of neighbouring guidelines.

 

https://www.whitneydafoe.com/mecfs/?post=health-care-failings

 

Oh he’s right. So awful.

 

Maybe I am misreading things but Whitney looks in much better shape than at times in the past.
I hope that reflects a genuine increase in wellbeing.