Billt
Senior Member
- Messages
- 289
- Location
- New Orleans
I want to echo @Gingergrrl's post. I have mild-moderate ME and so does my son. Sometimes I find myself wondering if I could just think my way out of being ill. And if my son could try harder. This is despite me having spent hundreds of hours reading about the illness, living with it daily and having tried unsuccessfully to pretend that I'm well lots of times. I absolutely get that what we have is a physical disease and I strongly put forward that view to sceptical doctors. But without clear biomarkers, without obvious physical signs and in this environment where highly qualified medical specialists will just tell you to go practice mindfulness or GET, it's natural to occasionally doubt.
How much harder then must it be for a parent without ME themselves to not occasionally wonder if some kind of behavioural modification or psychological intervention might make a difference? These parents are accompanying their children through the hell of this illness. I think we need to cut them a bit of slack, especially if they have taken the time to come to this forum to ask questions.
Hypnosis, if it does anything at all, may perhaps help with pain or things like tinnitus, by directing focus elsewhere. I can't see how hypnosis could possibly stop PEM.
@Bill, good on you for being there for your son. Snowdrop had a good suggestion about investigating orthostatic intolerance.
SOC , Hutan Wonderful posts. I myself have R/A so I do know what illness can do. But it is much much harder to watch your child have an illness as you both know. I know the NO Cure at this time situation, but always looking for something to help. My thought was #1 see if it has helped anybody at all, and #2 if it did then MAYBE I would look further into it. If it could help him concentrate easier than maybe the PEM would be less. That was more my thought for it. Not really as a cure..
Everyone has been so kind to chip in, and it is really appreciated . It is how we learn. You guys have given me excellent information. Be well ... Bill