If there is orthostatic intolerance - most of us with it find we need to have our heads elevated at least some. Lying flat seems to make us worse. Many of us need oxygen and Cpap machines because we don't have enough O2 and because the autonomic system is faulty our brain doesn't tell us to breathe in our sleep. Compression garments help some and inflatable leg pumps to get oxygen and blood to our hearts and heads. Being aware of something can allow one to make positive changes in comfort at home. If we don't know those things - we can't do them.I am so sorry that Whitney has such a severe form of M.E. I thank his family for sharing his story and send them buckets of love for all they face daily.
What I am getting from some comments on here is not perhaps appreciating how very severe M.E and its symptoms means travel to a doctors could either kill the person or plunge them into even more intense deterioration that would make life beyond tolerable if that was even possible with a case as severe as Whitney's. Due to this and as Whitney's mum says considering even travelling by ambulance to see a doctor when there are no guarantees the treatment will help is an extremely difficult decision to make.
Autonomic dysfunction is undoubtedly involved in severe M.E (why does it have to be automatically considered as something else other than part of very severe m.e, perhaps it is, perhaps it's not) and I would have thought but I don't know as I am not involved Whitney's current doctors would be looking at autonomic dysfunction as he is seeing some of the few experienced M.E doctors out there. I imagine that Whitney lies flat not only due to orthostatic intolerance but also to being ghastly ill, intolerably weak with acute sensory overload.
My heart goes out to Whitney and all very severe M.E sufferers, it's a hellish existence with no clear answers
When someone is in a desperate place with someone this critical, we reach out for answers. There will be many suggestions. Some worth pursuing others not probable. That's the beauty of forums. There is a lot of knowledge out there. You graciously accept comments given with the right motive behind them (intentions to help) - rather than being dismissive and critical.
We all get that he is in a dire place in his health. But a phone call doesn't require movement and many doctors consult and can give their expert advice so that others can put into place what those suggestions may be.