By Niles A.

From Spring 2015 Forum

I loved the President’s Message from the last (winter) National Forum being so truthful, especially about the IACFS (International Association for Chronic Fatigue Syndrome). Shame on every member of the IACFS. Just about a week before I read my Forum, I had read the IACFS online newsletter where the president, psychologist Fred Friedberg, actually admitted that he “attended the federally sponsored Pathways to Prevention (P2P) meeting in Bethesda, Maryland, the initiative that is focused on summarizing research on diagnosis and treatment in CFS/ME and identifying research gaps. Despite considerable controversy, I thought it was a useful and productive meeting that did identify areas for future research.”

What an utterly deceptive message he sent! This was a secretive meeting that nobody knew about until one invited patient put it on their Facebook page. Sure, the NIH knows they can depend upon the IACFS and, especially on dear Freddie-boy, to make sure that actual scientific fact does not interfere with the nonsense the IACFS, along with our own government, wants patients and physicians to believe. And Freddieboy continues to hide even the fully replicated science that could actually endanger a patient’s life when they need any surgical procedure. In fact, the IACFS is not satisfied with their Primer where they have already done that but are now in the process of writing up a “paediatric primer” that will give the same misinformation to children by not listing the fully proven anesthesia protocol for those with CFIDS/ME but, instead, offering silly advice by Charles Lapp, M.D. that can endanger the patient.

Freddie-boy also edits their journal entitled Fatigue: Biomedicine, Health and Behavior. As always, the psychologist makes sure the accepted articles are mostly on “behavior”. I remember when he announced, online, years ago, that his own daughter had been diagnosed with “CFS” and he now had it in his own family! But I also remembered, many years prior to this, that I heard him speak at a meeting of patients where he admitted that he, too, was a patient with the illness! When someone else, who must have been at that or some other meeting back when he was actually being truthful, reminded him of that, he stopped chatting online!

His lies continue in that same introductory IACFS newsletter when he said. “…the first recorded epidemic of an ME/CFS epidemic illness occurred in 1948 in Akureyri, Iceland.” Well, maybe Freddie-boy wasn’t lying but just was ignorant of the fact that the first outbreak reported upon in a medical journal was in a hospital in Los Angeles, California in 1934 and there was another one in Wisconsin in 1936, others in Switzerland in 1937 followed by one in England in 1939 and a couple more the occurred well before the Icelandic epidemic in 1948. Perhaps someone should let Freddie-boy know about a book published way back in 1992 by Byron Hyde, M.D., Jay Goldstein, M.D. and Paul Levine, M.D. titled The Clinical and Scientific Basis of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome with an notation that the illness is “also known as Post-Viral Fatigue Syndrome and Chronic Fatigue and Immune Dysfunction Syndrome”. In fact, the last author, Dr. Levine, was from the NIH! But I’m sure the psychologist knew that. In fact, I’ll wager that Freddy-boy even has a copy of that book right in his own library at home. It’s obvious that he, along with many members of the IACFS, enjoy the grants they’re receiving to study things already known about CFIDS/ME or to hide the truth of what has already been proven. When will Freddie-boy ever be truthful? Will that ever happen?

Niles is a longterm CFIDS/ME patient from Oregon.