Severe difficulties with eating in ME/CFS

Being a young woman, gastroenterology will try to diagnose you with a fake eating disorder no matter what's wrong. It happened to me when I was a couple of years older than her and my gastroparesis started. I wasn't even underweight.

 

This is an interesting case but it raises as many questions as answers, as SNTG says.

If gastroparesis is due to failure of stomach nerves then how come it improved? Autonomic nerve damage does occur in diabetes but that is a very different context.

The NHS information page says: Gastroparesis is thought to be a problem with the nerves and muscles in the stomach. It's not always known what causes it.

It seems people aren't even sure it is a problem with nerves. To me it is relevant that his sort of information will be written by the same gastroenterologists who are trying hard to justify not providing feeding support for such people, including people with ME/CFS. The people who Dr Roy was quoting in relation to Maeve Boothby O'Neil, saying feeding support was against guidelines.

We also recently saw a paper suggesting that tests for gastroparesis were unreliable and that the diagnosis made no difference to outcome and care.

My guess is that like ME/CFS this is a situation nobody actually understands. Gastroparesis is all very well as a diagnosis but if it comes under the 'functional' category, as it will, and we know what the implications of that are, I am not sure it is helpful.

 

Is it at all similar to what you get temporarily when you have a general anaesthetic ? And are warned not to go too overboard (even though you are often starving as you had to fast before op) eating too much for the next x hours?

 

I think that has more to do with the emetic effects of things like opiates, often used as part of anaesthesia. But maybe similar in that the problem is not in the gut nerves themselves.