WORTHLESS IACFS AND STANFORD MEETINGS
By Robert Huntington
From Summer 2014 Forum
To cash in on the IACFS conference being held, a Stanford University ME/CFS Symposium was held days before and, of course, nearly all of about 100 people who paid to get in were desperate patients. Both the IACFS conference and the Stanford conference seemed to be composed of bloodsuckers.
I realize that I have to back up that statement I just wrote, so let’s begin with the famous “virus hunter”, Dr. Ian Lipkin, who already had proven and admitted that it was not a virus nor a bacteria nor even a fungus that causes “CFS”. So what is he raising well over a million dollars from desperate patients for? To study the “exciting new pathway” to support “comprehensive studies into the role of the bacteria, fungi and viruses in CFS.” Do you really believe the famous “virus hunter” has no clue about the decimation of Stat-1 in CFS that was first found by Dr. Kenny De MeirLeir (who never really mentioned or shared that vital discovery aloud to this day) which was then fully replicated by the Wisconsin Viral Research Institute (via NCF funding)? That work is still available on the website of the Institute that replicated that work in the 1990’s but never mentioned by those researchers who replicated the work following an oral presentation to the AACFS which is now called the IACFS. So why does Lipkin and all the rest of the researchers pretend they need money for useless work that will only take us a step backward? Just in case you knew none of his proposals would help any PWC/ME patients, Lipkin also suggested his work could benefit those with Lyme Disease! He even proposed looking at other tick-borne illnesses. And he wants the desperately ill patients to donate money to him to do this work? Shameful!
The Stanford Conference had Dr. Jose Montoya, who previously struck out with his antiviral study since the cause, proven well before he began, was not a virus said, “We need a sense of urgency.” How is he going about that? By overseeing a study at his university for a pharmaceutical that is testing a “treatment” for “CFS”. The treatment is composed of vitamins and minerals along with methylphenidate which most know is Ritalin. Huh? That drug was first licensed in 1955 for hyperactivity which is now known as ADHD. The combination with the vitamins and minerals are being used by a smaller drug pharmaceutical to get around the property that is owned by a larger pharmaceutical! And, yes, that same drug was tried on patients more than two decades ago and seemed, at first, to help until it ended up nearly killing some patients who, when taking it, felt a bit better! Treatments can only be effective when the actual cause is acknowledged and addressed.
But… that’s not all that Montoya is looking at. He’s looking at cytokines, too, because he thinks that they may be spilling from the tissues into the blood. Well, yeah, that’s what cytokines do. I read about cytokines and “CFS” in the early 1990’s! What does he suspect would cause something such as chromosomal aberrations since the few things that can do that damage is comprised of a lot more than just cytokines! He’s also looking at IL-17 that sounds so good. He must have read the recent research from the MD Anderson Cancer Center or China’s Tsinghua University School of Medicine and many others that are studying the development of a novel immune modulator that would help many autoimmune diseases. But Montoya suggested that “ME/CFS” may well be an autoimmune and inflammatory disease. Yes, Jose, the autoimmunity, too, was fully proven and replicated years ago by Dr. Yoshitsugi Hokama who also explained the cause was not one from nature. Aha! And the inflammation was first described by Sir Donald Acheson when he named it myalgic encephalomyelitis way back in the 1950’s!
Lipkin and others at Stanford went on and on about EBV (Epstein-Barr Virus) that was fully disproven as causative by the NIH so many years ago when this illness was called Chronic EBV and other things that have been known and looked previously. A roundtable on treatment had others trying to grab the attention of patients including Dr. Dan Peterson, who even spent time talking about the IOM yet no real treatments were ever mentioned. Strange since Peterson had already published a paper (Brenu et al) that found CD56bright NK Cells are decreased in CFIDS/ME and that is exactly what happens with ionizing radiation! Chuck Lapp, once again, stated his recommendations for surgery which are ridiculous since Dr. Hokama had already found the real answer in CFIDS/ME patients and following Lapp’s advice could actually be lethal to a patient. Dumb, dumber and dumbest and quite frightening that Lapp continues to say that!
The title of the 2014 conference was “Translating Science into Clinical Practice” and, being opposite to the title, nobody mentioned the more recent science as the translation was something they wanted to avoid at the expense and continued suffering of the patient population. After a “welcome” from the IACFS president, psychologist Fred Friedberg and a couple of others, a “morning workshop” began on immunology and that workshop included both Drs. Dan Peterson and Nancy Klimas who both had their names attached to separate medical journal papers that had found proteins connected to ionizing radiation. Neither one of them, of course mentioned that significant tidbit. Other panel members were Dr. Konstance Knox, who had previously replicated the work on Stat-1 and Dr. Elizabeth Unger from our own CDC. Dr. Unger and her governmental agency continue to hide science. She called the illness “complex” although she failed to admit that many of the complexities have already been unraveled.
A plenary address was the start of the scientific conference and was given by John Hopkin’s Dr. Noel Rose. He talked about autoimmunity and how hard it was to prove. He seemed entirely ignorant that CFIDS/ME had been proven to be autoimmune years ago (Hokama et al) but he did talk about environmental factors. He left one dangerous environmental factor out, of course: ionizing radiation!
The conference went on and on and on with silly things that only touched on the very edge of science but always failed to zone in on what could help since, if one continuously ignores the most important and fully replicated science, it cannot “translate” into any good “clinical practice.” One example of dozens was Dr. John Chia, who still believes an enterovirus is causative even though the famous virus hunter, Lipkin, has already ruled out any viral cause and, of course, only a very small list were found possible causes after the replication of Stat-1 decimation in the 1990’s. Another sad example of noninformation was under “treatment studies” where two others, Drs. Nicole Baldwin and Lucinda Bateman, talked about treating orthostatic intolerance with midodrine. That was suggested back in the 1990’s when orthostatic intolerance was first found to be part of CFIDS/ME by the late and great Dr. David Streeten and Dr. Streeten knew and said that no treatment could or would be helpful until the actual cause, itself, was proven and addressed. Dr. Streeten was known as the “father of orthostatic hypotension”, having written the text for medical schools in this area that is still used today in medical schools. This conference went on and on for days and even had nonprofessionals giving advice to others including one nonprofessional from one of the two groups that support the ongoing IOM charade, PANDORA.
The IACFS president spent a lot of time promoting his book on how to feel better using cognitive behavioral therapy. Indeed, the psychologist got NIH funding of $600,000 to publish his mumbo-jumbo of his seven-step plan. He tells patients, for example, to keep a lot of their feelings written down in order to enable them to lower their expectations! It seems more than obvious that he has become a lead psychobabbler. Were he and his daughter misdiagnosed or did he agree to hide the truth and, instead, become the president of the IACFS to promote relaxation techniques and identify negative emotions in exchange for a real and effective treatment that is scientifically based? Indeed, the IACFS will now sell a new “Clinical practice manual” and the authors include Drs. Chuck Lapp, Lennie Jason, Lucinda Bateman, Staci Stevens and Rosamund Vallings and, of course, President Fred, who was on the IOM committee that tried to continue to hide Gulf War Syndrome by changing the name to an even worse one.
The Conference ended with a summary by Dr. Anthony Komaroff, as do all their conferences. After all, he promoted establishing a “professional group” and he continues to make nothing or very little sound like something important. One must remember that Tony Komaroff continues to be a paid advisor to the CDC’s horrendous CFS division and was also on the committee and one of the authors of the Holmes Criteria that changed the name, in the United States, to “chronic fatigue syndrome”. He lauded “biosample banks”, mentioning a few but never, of course, mentioned one of the first in the world and the very first in the United States since that repository was established by the National CFIDS Foundation and Tony’s allegiance is to the government as well as to those who continue to keep CFIDS/ME as a vague “fatiguing illness” such as the CAA.
Komaroff’s summary mentioned levels of inflammation and other work that did not and would not go toward exposing the cause and was far from new information. He talked of having a treatment that actually helped yet that has been proven impossible for any illness unless the actual cause is addressed. He mentioned work that “suggests autoimmunity may play a role in CFS” even though he is fully aware that autoimmunity has already been proven years ago with funding by both the NCF and the NIH. He lauded the case definition talks led by Lennie Jason, who has joined the others doing mere fringe work and, purposefully, withholds information as he talked about how “robust evidence of an underlying biological process” disproves this is “a mere somatic illness.” The biological process, he explained, involves the autonomic nervous system, the immune system, energy metabolism and oxidative and nitrosative stress yet all that was proven decades ago. Carefully, he avoided mentioning any new discoveries that have proven so much more including the actual cause.
One of the questions to Komaroff was about an interview he had given just days before to a local large newspaper and where he was quoted on treatments and mentioned the two worthless and dangerous treatments that our own CDC (where, remember, he is paid to be an advisor) continues to laud: CBT and GET. Well, his answer was being digitally recorded so he, like all brilliant politicians, did the side-step and said, “I don’t want to be dragged into that issue. I don’t want to get dragged into discussion of the role of CBT because I know it’s a polarized issue. It wasn’t discussed at this conference. I’d be happy to talk with you individually though”. Actually, the IACFS president, psychologist Fred, had mentioned CBT many times as he promoted his book despite never mentioning the actual term, itself, and his friend, Lennie Jason, had also helped to promote the book!
Not nearly ‘nuff said.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606