I feel the lack of ‘specialist care’ is a bit of a red herring. The main current problem is the failure of medical services to seriously listen to the patient to accommodate sensory issues and to introduce alternative feeding methods when needed to avoid malnutrition and dehydration. This does not require an ME/CFS specialist service, but is something any reasonable sized hospital should be able to achieve.
In an ideal world we need medical specialists down the line, especially as we don’t know the prognosis of those with very severe ME even if they are not harmed by the doctors meant to help them. It may be that the right management may stabilise the condition or even allow some spontaneous improvement or it may be that deterioration will continue later requiring central lines for nutrition and ultimately palliative care, but at least it will not be inappropriate medical care killing people.
