I see it as probably happening in this order. Someone noted that Hutchins' CFI had activity in 2010, i think it was that incorporation papers were filed in 2010. Probably Klimas and/or Bateman told him to use "Chronic Fatigue." Then he went to Montoya and said I'll fund part of my "CFI" here at Stanford, so that's when Montoya got the funding flowing to really ramp up research and put up the website with all the big plans for research with the name "Stanford CFI."
I really doubt Montoya came up with the name Stanford CFI, got funding from Stanford and then suggested the name CFI to the new Hutchins "CFS" Foundation.
I don't think he wanted huge funding to set up a center for neuro-immune viral diseases so he went to the head of his infectious disease dept and said "Picture it, Stanford will be known around the world as the best and brightest in Fatigue! Well, honestly, it's really virology, not chronic fatigue, but I know that Stanford Med School won't want to be known as having a cutting edge infectious disease department, so you'll want to emphasize the Fatigue instead. If we call it the Stanford Chronic Fatigue Initiative we can really market the fact that Stanford Med School is synonomous with Fatigue. I'll need millions from you for the full blown fatigue initiative to market this and to have expensive studies looking for all kinds of exotic viruses in fatigue."
"Sure Dr. Montoya. Here's a check for x million dollars. We'll let you talk about virology on the website, but no 'virology' in the name, your lab has to be called the Fatigue Place or the like so the Board of Trustees and the Med School Dean will approve the funding. Make sure that when people think of Stanford, they think Chronic Fatigue."
Not likely. The CFI probably made Montoya and Stanford call it the Stanford CFI against their wishes. Then I bitched at the clinic rep on a thread on PR and sent them a couple of emails about the name and they had some absolutely ridiculous excuse that the name of the clinic had to be four words for search engine purposes. yeah, i know! i know!, that doesn't have anything to do with CF!
So why all the secrecy?? They, at the very least Klimas, Bateman and Montoya, know patients will be really pissed with "CF" Why don't they come out and address that? Because there is no excuse for it, so let's keep all this secret for as long as possible. People are feeling hopeless and committing suicide, but let's keep the good news that there is at least $10M in new funding a secret for a year. If they were going to call it MEI and study an actual ME cohort, they wouldn't need to keep it secret. They would be greeted as heros by patients like WPI was.
Justin Reilly I agree with your concerns about "CF" and especially in light of this excerpt from Co-cure:
""Mady Hornig, MA, MD is a physician- scientist working at Columbia
University on the role of microbial, immune, and toxic stimuli in the
development of psychiatric illnesses."
http://cfinitiative.org/lead-researchers/mady-hornig/
"...She also uses epidemiologic approaches to investigate the
immunopathogenesis of neuropsychiatric disorders such as autism,
schizophrenia, mood disorders, AD/HD, PANDAS and *Chronic Fatigue
Syndrome*.""
Judging from the researchers they should know what this disease is but it is unsettling to see people using "chronic fatigue" instead of "Myalgic Encephalomyelitis" . Anyways this sounds very very promising and I think if they have family friends they will want to make sure that there is concrete research on *the real illness* and not some sort of "collection of buzzphrases" that Wessely and friends plucked out of Freud or who knows where.
In any illness it makes sense to study the patients using the most stringent criteria and the most severely affected, since the abnormalities will be greater and more easy to identify. Those of us with more moderate illness that might not meet the ICC (actually there is a poll showing almost everyone here meets the ICC but just for the sake of stating it) or Hyde's Criteria understand that studying the most severely affected with the most "classical presentation" is our best hope too...
Despite the tone of this post, I am really hopeful that this will happen. There is so much basic epidemiology, basic pathology, basic longitudinal studies, protein and mRNA expression studies, Genome sequencing,... so many basic things that need to be done...
Also now is the perfect time to use M.E. and to make clear the difference between the "chronic Fatigue" that is studied in Britain and the illness as was described by Ramsay, Hyde, Cheney, Peterson etc. etc... I can't see any disadvantages to using "Myalgic Encephalomyelitis" at the present time. And also this gives those in Psychiatry a political out, since they can say they are studying a different illness.
At this point it is better to give them an out since they have already redefined Chronic Fatigue Syndrome to be unrecognizable with the initial Definition by Holmes and the M.E. definitions by Ramsay, Hyde, CCC, and the ICC. Maybe this way progress can be had.
Thank-you to Hutchins Family!
