By *, M.D.
From Summer 2009 Forum
The 9th International IACFS/ME Research and Clinical Conference held from March 12-15 in Reno, Nevada, was a total disappointment. Nothing really new or original was presented in either the oral or the poster presentations and it seemed to be overloaded with theories that had not been proven and, in many cases, ones that science had already disproven. Less than 200 people were in attendance and, of those, over half were giving either oral or poster presentations.
I did not go to the patient conference although I stopped in long enough to hear Nancy Klimas, M.D. tell patients that they can try probiotics and I recalled her early 1990 medical article comparing AIDS to "CFS". Would she dare to tell AIDS patients to try probiotics? I prefer scientific facts so left and waited for the medical conference to begin.
The first oral presentation was by Dr. Yasuyoshi Watnabe who talked on fatigue and later, when he focused on CFIDS/ME, he talked about the CNS (central nervous system) abnormalities that occur. The first session began with a paper by Greta Moorkens on CBT and GET (cogntive behavioral therapy, graded exercise therapy) study that showed no statistical improvements and the negative results from GET. And the conference went on with talks that "reviewed" or "pointed to" or "suggested" or had the "stongest evidence" but really gave us no more solid information needed. CBT was also presented by a second study from Belgium where some thought it helped a bit but the majority worsened! Many presenters repeated old theories that have already been presented such as one psychologist from upstate NY. The first session ended with a report of isoprinosine used in a Miami study which seemed to help in a small way. This is something that has been tried by many patients with no rewarding and lasting results realised.
Session 2 was on epidemiology and was a resounding failure. Dr. Rosamund Vallings, from a study with 36 patients, found the cause of death did not differ from healthy patients. Dr. Tokuzo Matsui felt the exclusion of mental health should be removed from the diagnostic criteria and "possible risk factors" were found by a researcher from Atlanta. Session 3 was a continung disappointment with "suggestions" and hype of biomarkers although what was mentioned are not biomarkers specifically for CFIDS/ME but for several autoimmune diseases. A biomarker is a test that can distinguish a disease from another and none that were suggested can possibly do this. Dr. Jonathan Kerr talked about a study published in 2003 that was already reported upon in this newsletter that year while Session 4 had Dr. Kenny de Meirleir talking about the treatment of the secondary viruses of HHV6 and 7 and gamma globulin treatments which have previously been tried several times for CFIDS/ME. Dr. Judy Mikovits also mentioned HHV6 along with CMV and what these studies "may provide" while two others talked about reactivation of the same viruses which is not knew and hardly newsworthy.
Session 5 on immunology brought more "maybes" with Dr. Christopher Snell talking about higher RNase L or elastase and if they should have any efficacy in the use of biomarkers while Dr. Gordon Broderick found Gulf War Illness can be discriminated with markers yet mentioned not one that was any different those found in CFIDS/ME which failed dismally to discriminate. Dr. Nancy Klimas talked about "potential biomarkers" but I wasn't convinced this was anything more than enthusiastic hope that was not based on credible hope or not-so-credible hope. She certainly gave no scientific clues.
The same held true of conjecture but no scientific proof in all the remaining sessions unless the work had already been reported upon previously such as the talk about subtyping done genetically by Dr. Jonathan Kerr which this newsletter has previously reported upon. Some of the information was so redundant and old, such as the talk by Dr. Elke van Hoof that found cognitive problems included slower information processing, that it became nearly laughable. Diet and the influence on fatigue was presented by some Japanese researchers which presented nothing new in relationship to any particular illness.
Poster presentations were abundant but not many had any merit. One good one hidden among many quite mediocre to poor ones was the identification in gene expression on some ATPase enzymes and ion channels. It was work being done in Glasgow and was presented by Dr. Susan Haden. It may aid in the pathogenesis and is caused by bacteria. I'm hoping there will be a publication on this soon. One found NADH had benefit although an increase in depression was also found. Thus, I failed to understand the benefit. Dr. Bruce Carruthers felt pacing was the strategy that must be a part of every PWC/ME while Dr. Paul Cheney came up with yet another theory when he questioned if oxygen toxicity was common. Dr. John Chia felt oxymatrine could be helpful for immune modulation while the soon to be announced new IACFS president, Dr. Kenneth Friedberg, showed how little federal funding this disease has gotten. Friedberg wants all patients to buy his book which promote CBT and pacing as do most psychologists. Dr. Lawrence Klapow found a new parasite in CFIDS/ME, a roundworm that he reported on more than a decade ago while Dr. Ashok Gupta once again pushed his wellworn amygdala retraining techniques. Many who tout their amazing help via the internet had posters although I've known no patient who has had a substancial amount of good health trying any of these various protocols. Some of the hypothetical suggestions were downright ludicrous while others showed the data they had did not support their ideas. Other posters were redundant and nearly two decades old such as Dr. Alison Bested who found patients had trouble working and caring for their homes while Dr. Leonard Jason found CFIDS/ME is underreported in medical texts.
The workshops offered were far worse. Dr. Charles Lapp and Dr. Lucinda Bateman talked on treating pain, sleep and fatigue (pacing came first, of course) with suggestions for CBT counseling, biofeedback and gentle physical conditioning. Nothing could be gained by either patient or physcian from any workshops including one on behavioral assessment and one on how to apply for grants by the NIH's Dr. Eleanor Hanna who was joined by some who had gotten grants (Drs. Jason, Klimas, Fletcher, Friedberg). In order to be funded by the NIH, one seemed to have to apply for work that was more basic that would not go into any science that could possibly expose exactly what the cause of the illness could possibly be. The first research to be funded in history by the NIH was a grant to Dr. Nancy Klimas many years ago. She neglected to offer that her grant for "CFS" was on CBT.
The most telling feature of this conference that so often is looked forward to by many of those attending was the session where you could line up for your chance to ask a question at the microphone before a table of IACFS directors. This time there were no oral questions permitted and only a selection of mundane written ones were selected to be answered. My own rather probing question was not one of those selected. The conference ended with an enthusiastic review by Dr. Anthony Komaroff who always seems to be able to make a boring and extremely mundane conference sound exciting along with a hearty invitation to visit a nearby casino by Dr. Dan Peterson. My luck may have been better if I had taken his suggestion!
I will join many of my colleagues in no longer traveling to attend these conferences in the future. I have a private practice with CFIDS/ME patients as well as having a member of my family who is a victim of this malady. While it is wonderful for the organizers and sponsors of this conference to be enthusiastic, it is unfair for them to tout the information given at this conference as either new and/or exciting. It was neither.
* The author is a member of the medical committee of the National CFIDS Foundation, Inc. and has chosen to write this anonymously in order to be perfectly truthful.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606