CFS Activist Jill McLaughlin observes:
"Of course we need more research but we do not need to wait for "more
science" or the Holy Grail of a marker or the cause - even to "prove" that
it is "real." NO other illness has been held to this unattainable standard
and if we keep buying into this line of thinking we only hold ourselves
back. There is substantial objective, well-documented evidence of CNS,
immune, endocrine, cardiovascular, and autonomic nervous system
abnormalities, which indicate that it is biologically, not psychologically
determined. We need to keep pushing for recognition and utilization of what
we have and can use now, not always waiting for more".
There has been proof that CFS is real since the mid-80s when the first MRI machine in northern Nevada documented brain lesions in CFS patients similar to those seen in MS. But that didn't fit the portrait that CDC was trying to paint, so this was not publicized.
As time went on, 4000+ research studies were done around the world: viruses were identified, viral damage was documented, neurological problems were diagnosed, and after trying zillions of prescriptions, the only one shown to work more often than not was an anti-viral. And still there were those who put their hands over their ears, singing Lalalalala, "I can't hear you", because they wanted to find a purely psychological problem.
Any patient who insisted they had no psychological basis for their symptoms was interrogated until the doctor found the one thing, however minor it seemed to the patient, that the doctor could pounce on to yell "aha!" When I produced diagnoses from psych experts that I had no depression or other psychological diagnosis, what I had was symptoms compatible with someone who had the flu, these same doctors found reasons to believe that they are better qualified to diagnose depression than a psychiatrist.
When anti-depressants don't work, some doctors insist the problem isn't that there is no depression for them to work on, but because the patient isn't cooperative. Despite the symptoms, I was still trying to work, yet I was accused of "not wanting to get better and have to go back to work". Life would have been a lot easier if taking a pill was enough to make me feel well enough to work full-time! If you don't believe me, YOU try making ends meet on an income of $130 a month.
The standard applied to CFS is unattainable. They've refused to give it a more serious name until we can prove what causes it, but because of the ridiculous name they've tagged it with, it's difficult to get research funding. What was wrong with the old name, Myalgic Encephalomyelitis? Or name it Peterson/Cheney Disease after the two doctors who identified the Incline Village epidemic -- then the name won't have to be changed when a definitive cause is found. But the same people who refuse to listen to any evidence that this is not a purely psychological problem also refuse to change the name to something that might garner more respect and more research funding.
And then they blame the patients when psychological treatment doesn't cure the virus.