Quote 'Looking in from the outside on this debate, however, I think that there is a risk here: specifically, because (even using criteria e.g. PEM/Canadian) there is no consensus / strong evidence-base about who should be included or excluded then this issue will delay any evidence being acquired.'
I didn't think there was a problem with consensus.
People with ME have the Canadian Criteria symptoms, and must have post exertional malaise/exacerbation of symptoms. If they don't, it's not ME.
ME was clearly defined by Melvin Ramsay 50 years ago, it's the psychiatrists who hi-jacked the illness who have muddied the waters by including anyone with varying degrees of fatigue and depression.
From
http://www.name-us.org/defintionspages/deframsay.htm
Ramsay definition 1986
A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:
(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.
(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.
(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)
(4) A characteristically chronic relapsing course."
Dr. Ramsay, together with Dr. Dowsett, listed this criteria for M.E. in 1990 in the same article (just prior to his death):
"
We adopted the following criteria:
"A syndrome initiated by a viral infection commonly described as a respiratory/gastro intestinal illness but a gradual or more dramatic onset following neurological, cardiac or endocrine disability is recognised.
"The cardinal features, in a patient who has previously been physically and mentally fit, with a good work record are:
(1)Generalised or localised muscle fatigue after minimal exertion with
prolonged recovery time.
(2)Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.
(3)Variable involvement of cardiac and other bodily systems.
(4)An extended relapsing course with a tendency to chronicity.
(5)Marked variability of symptoms both within and between episodes."
The failure to agree on firm diagnostic criteria has distorted the data base for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis." Dr. A. Melvin Ramsay, quoted on NAME.US.org.
In
Redefinitions of ME/CFS – A 20th Century Phenomenon, Dr. E.G. Dowsett summarizes historic ME and CFS definitions and emphatically states, "To Summarise: I would urge all our colleagues to look again at the literature prior to 1988 before redefining this illne
ss''
But the psychitrists did not listen, they wanted it to be called chronic fatigue, and that is when the whole mess started.
I think there needs to be a specific ME study first, then study the fatigue patients after this. The reason I put ME patients ahead of people with other fatigue illnesses is that people are dying from ME right now, and many hundreds of thousands are rotting away in darkened bedroom denied any sort of life. People are dying and we don't yet know what the illness is due to so many years of neglect from the medical profession.