I am aware that the lying flat bit and the unpredictability are not 'in the books' but to me they point to aspects that have not been that well covered by the standard accounts and so I think they are worth stressing a bit.
I have now listened to about 500 people on forums describing their symptoms. I am pretty sure that not having an element of feeling forced to lie flat and not having an element of unpredictability are atypical. That isn't to say not having them must be outside the syndrome but time and time again I hear people talking about OI in the wider sense that being recumbent or partly recumbent is necessary some of the time. And I think this distinguishes ME/CFS symptoms quite clearly from 'secondary fatigue' seen with systemic illness like renal failure or RA. I also think it is not typical of depression. I have trained on, and visited, wards with people with severe depressive illness and encountered it in the family. In general the seriously depressed individual sits motionless looking out of a window or into the middle of a room. It also emphasises that the problem is not just deconditioning or lack of ability to move about, although that lack is there. It is a symptom complex that no way would one expect to benefit from doing exercises any more than you would tell someone with acute vertigo to go for a walk (ensuring that they vomit and call over).
But thanks for the comments.
I discovered 20 + years ago that by lying completely flat/ head level with heart for 10 minutes that this would enable me to be vertical , sat down for next 4-6 hrs. However I was always cautious about being flat for too long……I didn’t want to cause more damage than benefit by under use . I simply found it a very useful as an energy top up means. Then having used remedial yoga a lot/ basically horizontal yoga, then I discovered Restorative Yoga by Judith Lassiter. This introduced me to the benefits of getting my head below my heart for short periods of time.
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