My son was diagnosed with ME when he was 13. His had an acute onset after multiple viruses - that last kicked off full blown ME. Acute headaches, aching joints, muscles, weakness, light intolerance, sleep patterns all over the place, inability to concentrate etc etc you all know the symptoms!! The up shot is that he was unable to walk more than a few steps ( I had to carry him up and down stairs on my back) and used a wheel chair for 2 years. With good management he gradually improved and by 15 was back at school - with the usual relapses if he did too much. He continued to improve and got back into scuba diving and even took up surfing (we were living in Oz at the time). He managed to get good grades at school and came out with a Diploma in Sound Engineering, and also managed and performed in a rock band - composing the songs. So he is a pretty smart cookie despite disrupted education and being moved around the globe. For a person with now mild ME he was doing pretty well. but any extreme cardio - such as trying to go for a run' would knock him completely out. Now things get complicated. Approx 2.5 years ago he once again got sick - some friends brought heavy colds into the house! His energy levels dropped and he had to finish his college course part time. At the same time he changed his diet and lost approx 12 kilos very quickly. Prior to this he had been experiencing periods throughout the day which he attributed to 'low blood sugar', when he felt spaced out and everything just got too hard to do. At that time he tried counteracting this with food - which he found didn't help and hence then changed his eating habits - more or less Paleo, cutting out carbs. So what is happening at the moment? He is now nearly 23 and finding it difficult to function normally. His hormones have been all over the place - stress hormones high, then low. He has next to no testosterone. Thyroid is on the low side of normal. His blood pressure and pulse have been so low that the teil table had to be reset as the alarm kept going off when he was hooked up! In order to kick start his day he has to do press ups to get the blood flowing to his body/brain in order to even get moving. During the day he has periods where he feels like he is waking up from anaesthetic/brain fog/walking thro treacle, and he 'spaces out' - this has happened when he was driving and that was scary. He feels like any breath he is taking in doesn't have any oxygen in it and that his body is fighting to get what O2 it can from his blood. So in order to snap himself out of this he then takes him self off and does around 100 pushups in sets of 3, this gets him going again until the next time - which in turn is wearing him out and the opposite of orthostatic tachycardia. He has to stand all day and often moves to keep himself alert. His sleep is poor, he takes meds every night to get to sleep, but his sleep is still unrefreshed and broken. He has difficulty regulating his temperature - cold sweats and really cold extremities. His legs and hands cramp regularly. Fluorescent lighting affects him as does excess noise. He has the mask like pattern on his face and his eyes are purple and sunken. He often has pallor. He was prescribed a mild anti depressant to help raise his BP - this made him feel worse - more sweats and sleepless nights. He has been on various therapies to raise his testosterone - his levels have gone up but made no difference to his ability to retain muscle/build muscle, nor his libido - he is completely disinterested. Have tried the usual vitamin/mineral supplements - tried Dr Sarah Myhill's mix for a while but did not see an improvement. Magnesium and potassium help the cramps. Vitamin B12 injections didn't seem to make a difference. He is not lazy and desperately wants to work full time ( he is applying for University but is not sure he will manage...) He has done a number of short courses and during any theory parts he had to keep leaving the classroom to do exercise in order to concentrate. His cognitive abilities are not all they should be - this is demonstrated by the fact that he is unable to write songs the way he used to, and he can spend days learning a song, play it beautifully and 2 days later has to learn it all over again. He is also not depressed, just pissed off he feels knackered all the time - he has to go to bed around 9 - just when any friends he has are going out and partying! Despite all this he managed to become a PADI Open Water Scuba Instructor, and also completed a cookery course and a yacht safety course. He has had loads of blood tests , has seen a 'top' endocrinologist, also a neurologist, and a cardiologist - at the moment our GP is talking about a pacemaker to at least normalise his heart rate - but I don't think this will solve the problem. He is not anorexic - as the endocrinologist first tried to jump on - just careful what he eats as he has found a diet that works for him. He is slightly built but has body fat. He had a complete brain MRI. nothing remarkable but some shading that should be checked in 12 months. He is 3rd generation ME. His maternal grandmother (81) is chronic, housebound - ill for 40 years. Classic ME. A waste of a life. Myself, his mum, mild now. Bedbound for a few months in my teens and struggled with energy levels all my life. Finding symptoms coming back now I am post menopause and getting older. Mainly in the way my muscles are affected. My father now has Myasthenia Gravis - another horrible illness that is utterly debilitating - and he is finding it harder as he is my mothers prime carer. So could ramble on for ages but just wonder if anyone can shed any light on what could be happening with my son - he really wants to get on with his life, and he does not fit the 'classic' ME any more???? Blood tests and other test results can be supplied if anyone is interested!