If only, she says, she could understand her body, what is happening; is that too much to hope for ?
The hell, she exists in, cannot be described.
There is a GREAT MYTH in ME world : : everyone says, oh there is no research, we can't do anything until we have done the research.
People need clinical support, biomedical input RIGHT NOW. In what other disease would you be left with absolutely nothing, no input, no service provision, because there is not enough research ?
The medical knowledge IS there, right, here, right now ! After all this time, we have figured out a great deal by ourselves; we have a pretty sophisticated idea what to look for - but the great big CFS machine always gets in the way, the one that writes people with Severe ME off as not worth bothering with, in the eyes of the medical profession !
Because of endemic misinterpretation, misrepresentation and misdirection people with Severe ME literally are being left to "rot"without proper medical support, without the respect given to other neurological diseases.
Plus there is an almost complete lack of understanding how to engage with and provide a service to people with Severe ME who require an ultra aware, flexible, sensitive, specialist approach.
It is time for a change !!!