Surely it is time for a biomedical pathway, serious investigation, biomedical treatment biomedical respect and proper research ?
People with Severe and Very Severe ME should not have the nothing that they get, should have to not live in fear of misinterpretation and mistreatment, at continuous risk of serious harm by ignorance, whether genuine or deliberate.
Surely that is not too much to ask?
It is not going to happen, though, until ME is separated from CFS.
Although they are used synonymously "ME" and "CFS" are not equivalent terms. Myalgic Encephalomyeltis is a neurological disease, Chronic Fatigue Syndrome is a made-up term that encompasses a wide range of fatigue conditions.
Currently some people use the term synonymously to mean ME and CFS are both mental health conditions, some interpret it as neurological; doctors and health and social service practitioners can chose which interpretation they use. This is unacceptable and dangerous for all.
ME does not exist on a continuum with Chronic Fatigue or CFS any more than Cancer , or Multiple Sclerosis does.
ME is not a fatigue illness , in the way it is contextualised in CFS; you don't even have to have fatigue to have ME.
ME is identified by its unique post exertional autoimmune response and post
exertional fatigue, which is quite different from ordinary fatigue - particularly the way it responds
deleteriously to exercise.
A service cannot safely identify and treat ME patients under a CFS definition without doing a gross disservice to taxonomic logic; the criteria for ME are very specific,whereas the criteria for CFS are far too vague, undefined, unreliable , too broad to be of any practical value.
CFS ignores the hallmark symptom of ME- the post -exertional impact of any activity as well as the complex, serious neurological endocrine, cardiac and autonomic body dysfunction, putting people's health and lives at great risk.
The techniques used in the therapeutic treatment of Chronic Fatigue are potentially dangerous -even life-threatening to someone with ME.
The imposition of the "CFS" label upon their disease, is precisely the reason why people with ME are so deprived of proper medical tests, treatments and research .
The use of "CFS" in conjunction with ME is cruel and unacceptable, it wrecks lives , it leaves numerous patients suffering for decades with no hope of a cure or treatment, and it results in countless daily cases of psychosocial abuse and needless suffering.
There is no reasonable logic to this neglect of ME patients.