By Jack T.*

From Winter 2011-2012 Forum

The International Chronic Fatigue Syndrome Medical Conference met in September of 2011 at the Delta Ottawa City Centre that overlooks the capital city of Ottawa in Ontario, Canada. The breathtaking views of the city from the hotel overshadowed any news that this conference had to offer. The first day began with the keynote speaker, Christine Kozak, talking about gammaretroviruses and then had "professional workshops" including how to apply for grants (Dennis F. Mangan, Ph.D.) and how to treat treat sleep and pain problems (Charles W. Lapp, M.D., Lucinda Bateman, M.D.). None of the sessions offered any substantial help for patients that I attended or heard about from other patients and none offered information not previously given or that I had knowledge of. After a lunch break and a visit to the exhibits, which were not very interesting, more workshops were held. I chose to, instead, listen to some of the speakers in the main conference hall. Byron Hyde, M.D., from the Nightingale Research Foundation, spoke of how most perceive CFIDS/ME as a psychological disorder despite the many physical problems experienced by patients such as Raynaud's Phenomena which highlights the dysregulation of blood circulation. Psychiatrist Ellie Stein, M.D. agreed with this as she found any personality disorders in CFIDS/ME patients were actually lower than the numbers found in the general population. Anthony L. Komaroff, M.D. spoke about how the search for a cause is ongoing yet "infectious agents can trigger and perpetuate" the illness. He never mentioned that science had already found the reason for that. It seemed to illustrate the fact that the majority of presenters at this conference displayed much more ego than scientific fact.

On September 23rd, the "general session" began with a welcome by psychologist and president of the IACFS/ME, Fred Friedberg, Ph.D. followed by a sessions where clinicians and researchers spoke about their own favorite subjects. Two of the authors from the original article that associated the retrovirus XMRV with this illness was one of the most interesting since it featured such opposing viewpoints from Judy Mikovits, Ph.D. from the Whittemore Peterson Institute and John Coffin, Ph.D. from Tufts University Sackler School of Graduate Biomedical Sciences. Dr. Mikovits, despite numerous studies that could not replicate her work, still insists the retrovirus is linked to the illness. Dr. Coffin, like most, now says it points to mouse contamination. Neither addressed the other by name nor did they look at one another and while Dr. Mikovits spoke loudly and emphatically, it appeared to many that she was merely refusing to accept that the original published study has been unable to be replicated time and again despite the partial retraction. Dr. Mikovits loudly and emphatically voiced her opinion that CFIDS/ME patients had a virus that is "highly related" to XMRV which she insisted was HGRV, something she insisted was going to be proven. Dr. Coffin looked very uncomfortable when she talked but he stressed that, though he initially thought the XMRV theory was "a wonderful hypothesis", her new claim that there's more than one type of XMRV retrovirus seemed a bit ludicrous since she presented no science to back that up such as a viral sequence. Her presenatation was underwhelming. Dr. Konstance Knox was quoted by the local media as saying Dr. Mikovits was "just reaching" and "obuscating" the findings. Another retrovirologist from Sweden, Jonas Blomberg, Ph.D., was quoted that he felt Dr. Mikovit's new theory was "hard to handle" while Kenny de Meirleir, M.D. from Brussels who had Dr. Mikovit's institute run his assays, refused to state his opinion as negative or positive!

There were many short presentations that seemed only redundancies of formally proven work such as one from the UK, Professor Ian Treaseden, who presented work done in the 1990's by Dr. David Streeten in addition to other work done by the government of the United States. Another was a poster presentation from Dr. Byron Hyde that again warned of thyroid cancer in patients even though that was presentated years ago as a poster at this same group by him.

Later in the morning, a wonderful presentation was given by Professor Emeritus Harvey Moldosky, M.D. from the University of Toronto on sleep disturbances giving the science he discovered on the phases of sleep that patients lack but there was little I hadn't already read about in the newsletter of the National CFIDS Foundation years ago except for showing the differences in those with just fibromyalgia. The afternoon session's first talk was on "Treatment Advances" that included many more egos but no real advances and included a session on Ampligen that seemed very out of place for a medical conference as well as other unapproved and unproven products such as antivirals. A mid-afternoon session had a debate on the importance of tender points to diagnose fibromyalgia which seemed again out-of-place since fibromyalgia is merely comorbid with CFIDS/ME as it is with many illnesses. None of the panalists seemed convinced that tender points were valid for a diagnosis but seemed to have continued use only because insurance companies accept them! The afternoon concluded with a session on diagnosing with Nancy Klimas, M.D., Charles Lapp, M.D., Lucinda Bateman, M.D. and Derek Enlander, M.D. I observed that not one on this panel mentioned the importance of the 2008 discovery that CFIDS/ME was an autoimmune disease and there is now an established biomarker for this and I wondered if they had knowledge of the newest discoveries themselves. One of the physicians at the conference had tested many of his patients, including me, for this biomarker. It seemed to me, once again, that egos instead of fact carried the day.

Day 3 of the conference began with a session on case definitions. The new international consensus definition for ME that separates it from CFS was mentioned but Bruce Curruthers, M.D. spoke mainly of the 2003 international definition and metioned little about the yet to be published 2011 ME definition. Leonard A. Jason, Ph.D. said the Fukuda definition from the United States' CDC is more widely used internationally but a definition that is narrower is needed. It occured to me that if the 2011 ME criteria is accepted and used worldwide, it would be be dangerous for the United States since the country does not accept the term of ME any longer as a diagnostic entity but that was never mentioned. The CDC's Elizabeth Unger, M.D., Ph.D. was on the panel from the U.S.'s CDC although she had little to add except to give percentages from surveys that were fairly useless. She offered that only about 17% of physicians in the U.S. feel it is not their job to diagnose "CFS" while another 26% refer patients to a physciatrist and 25% advise cognitive therapy and exercise therapy. She claimed that the rates of the illness had increased using the newest "empiric" definition that had been shown not to address those with CFIDS or ME. She declared that "CFS" was both psychological and physical but chose to ignore all that Dr. Jason said.

Later in the morning, other sessions had little to offer despite their titles. They included a session on exercise (oh, it's not good for patients!) and on new research on immunology. The latter one was fraught, once again, with older research being revisited with new studies that offered nothing more significant but the most important research in this area, once again, was never mentioned. After a lunch break, other sessions seemed to give mere hypotheses a chance to be heard but no real scientific advancement. Dr. Unger, for instance, spoke of help from graded exercise therapy, highlighting how abysmal the U.S.'s CDC approach has become.

Day 4 was another day with semi-interesting things but no real breakthroughs that would benefit patients. Lea Steele, Ph.D. spoke on genetic research looking for the etiology of Gulf War Illness and how her team from Texas found them to have "evidence" of a vulnerability to neurotoxins. Hmmm… I wondered if she or anyone on her team from Texas knew about the work the NCF funded in this area. After a report on decreased basal ganglia activation found, there was a discussion on a clinical primer for physicians that, perhaps, the IACFS should have thought about 20 years ago when they began and knew finding a CFS-knowledgeable physician is nearly impossible in any country. I was quite disheartened to later learn that one of the primer committee members was a psychiatrist from Boston who refers to ME as myalgic encephalopathy.

As with all conferences, Dr. Komaroff summed up the conference and, as always, made it seem like so much important information was bestowed upon the attendees. Most I spoke to there agreed he was making a very lackluster four days appear exciting.

The session on treatment was looked forward to by many fellow patients. Again, hypotheses seemed to reign supreme instead of real science. John Chia, M.D. has insisted for years that he and his son got sick from this due to an enterovirus infection but, like most there, seemed totally unaware that replicated work previously presented at this group's conference showed a major lowering of Stat-1 that allows many viruses and bacteria to be present. His treatments for enteroviruses have not cured anyone thus far as far as I know. Dr. David Strayer talked about Ampligen, a drug not yet approved anywhere in the world and one that has been tried by many. A fellow conference attendee, Janine, told me she was on the drug years ago and it served to merely worsen her symptoms. I couldn't understand why the IACFS would even consider him speaking at this medical conference. There were others who talked about their treatment hypotheses including one who presented another's! Dr. Sarah Myhill's hypothesis was given by another to address what she believed was "failed mitochondrial function" and the presenter seemed totally unaware of the science that has already proven this dysfunction done via funding help by the National CFIDS Foundation's by researchers from Hawaii. Drs. Paul Cheney, Kenny DeMeirleir, Derek Enlander and others spoke excitedly about their own treatments yet they had produced very modest improvements, at best, in just a few symptoms and some had no improvement. One fairly new one, GcMAF, tried by a few, had some patients feel better but some got worse and some stayed the same! That seemed unlikely to be any miracle. I am assuming these physicians knew how to diagnose correctly. One, I found, was truthful: Dr. Irma Pinxterhuis. This doctor from Oslo was merely granted a poster presentation yet she was emphatic about how support and understanding combined with stress management and lowered expectations can be helpful. Unfortunately, this is not new information.

Another good poster was by Dr. Hirohiko Kuratsune on the changes of oxidation stress that suggested some markers although the knowledge was not new, again, was not new. There were so many posters that really came up with no constructive information. An example of these was a poster by Australia's Dr. Ekua Weba Brenu who thought, perhaps, vaccinations had something to do with the illness and, perhaps. there's a gestational process. She did have a better one on cytokines but, again, it was not new information and her ideas were not original. Dr. James Baraniuk had many that weren't new but did show a relationship between Gulf War Illness and our illness. He had one that showed "CFS had significantly lower sympathetic effects on heart rate, blood pressure , and nasal vascular vasocontriction" and another on stress performance. There were posters that had some ignorant things such as Dr. Terusha Milke's that suggested if children got more sleep, they wouldn't get this illness! Dr. Gordon Broderick had one on how cytokine expressions pointed to specific immune abnormalities. There were ones on exercise challenges were not only not new but actually redundant. I could not understand the logic of why many would even accepted to be presented as poster presentations at any medical conference.

The conference had an abundance of people presenting "information" that really was nothing but unproven ideas. There was little science that has not been already been proven and even those that were part of the board of the IACFS seemed unaware of the newer research or were merely unwilling to mention that information. In one instance, the president of the IACFS, Dr. Freidberg, said he believed that there were many different causes of this illness because so many different viruses and other events had triggered it in a variety of patients. Was he unaware of the work already replicated and announced at this same conference years ago that would account for that? I was in attendance at that conference years ago and listened, intently, as Dr. Konstance Knox, from Wisconsin in the U.S., presented the replication study done on the part of the immune system that was not normal in this disease and told everyone why so many viruses are found in this illness, such as EBV and HHV6-a, that are not causal. Why was the president of this professional organization totally unaware of that? Not a month later, I read in Newsweek that the IACFS president was given a $600,000 two year grant by the U.S.'s NIH to study how to manage this illness at home! I didn't need this last reminder as I had already made up my mind that this would be the last conference of the IACFS I would attend.

*Jack T. (his first name and middle initial) is a long term PWC/ME from New Brunswick, Canada and has been a member of the NCF since the second edition of our newsletter. In years past, he attended a support group in northern Maine until it's demise.