Thank you very much for your comprehensive reply. I agree with you about his 'real' understanding of pacing. At some level he knows what he needs to do but I think that day was a reflection of his frustration, combined with a need to be 'normal' with his friends. He knows he is paying the price so I hope we can move on from here having learned a hard lesson. He is normally very good at pacing himself especially after he met with Dr. Speight and the latter told him how important it was. There is little or no understanding of the condition here in Ireland. There are no specialist centres and no one within our health system that I can find that has any specific interest or knowledge of the condition. There is lots of sympathy though so Im trying to build on that, educate myself and in turn educate his docs (without pissing them off). Its a balancing act. My plan is to get as much testing carried out here as I can. I have to do that, on the one hand, strategically like you say. On the other hand though I owe it to him to advocate as strongly as possible - even if his docs think I'm a bit fanatic. Not saying they do, but it could be borderline!! I think you always run the risk of the wrath of the medics if you are pushing them hard. I am trying to compile a list of tests that I believe should be carried out and Im trying to research that now. Some of them (not many) will already have been carried out and I will ask his GP for copies of those results so that I can build a file on them. Im hoping to get to Belgium to see KDM at some point and the more tests I can get done here, the less expensive it will be. I'm an amateur at all this and I get confused with the tests, results, treatments, etc etc so my head is mush right now. I've made an appointment with his doc for tomorrow so I need to have my ducks lined up before I go in. I had wondered about a mitochondrial disorder too but is that not inherited? His illness was precipitated by him contracting EBV (misdiagnosed by his doctor by the way), viral pneumonia and chickenpox in May/June 2012 so because of that I was dismissing mito disorders? Maybe I'm wrong? Im very interested in your recovery from your bowel issues. He has been left to manage his bowel issues by himself to be honest. He uses enemas and sometimes a Peristeen Anal Irrigation system. He has three monthly reviews in the hospital and as long as his impaction isnt building up they simply check him over and send him on his way until the next review (or the next critical time when he has to be admitted for bowel evacuation if necessary).. He has managed to keep himself out of hospital as much as possible. Last time he was in was March of this year and before that it was October of last year.