Thursday, October 6, 2011

IACFSME Conference - Ottawa



I imagine that the organizers of the recent IACFSME meeting in Ottawa were surprised when they stepped out of their cabs on Wednesday, September 21st, and found the conference site, the Delta Hotel, was "under construction". For weeks the hotel website indicated that this was in the process of happening. This reality made for a shoddy start for what was billed as "an important conference". The flighty title of the conference was "Translating Evidence into Practice".

At first blush it was difficult not to see this "construction thing" as a symbol - a symbol of the current state surrounding this illness, and particularly of this conference and its organizers. This was not a good start. The hotel employees were quite cheerful about it all, happy I suppose to have this group show up. Somebody has to keep the hotel going, and it might as well be unwitting IACFSME conference attendees.

The consequence of this renovation was that fully one third of the ground floor and first floor of the hotel was unavailable for the conference. Most people are aware that 83.3% of meaningful interaction at conferences takes place in "informal settings". Researchers and clinicians find places in the lobby to meet and exchange ideas - and at all times of the day. Insomniacs stumble through the lobby and have fascinating conversations with strangers from half-way around the world. This is what hotel lobbies are designed for - the random meetings of people under relaxed circumstances. This is where shit happens. In this case, this part of the conference was canceled, and, not surprisingly, it had a negative effect on the atmosphere. There was no place to sit down - except for a ground floor bar. Outside of the conference room itself there was no place to sit and watch people come and go. Upstairs there was a room for patients to rest - but otherwise patients also had no place to sit, rest and enjoy the atmosphere.

The interior itself was very claustrophobic with the hallway spaces constricted with newly installed sheetrock and plastic drapes. The entire front part of building smelled of mold, dust and debris. Various fans were set up in the hallways to "circulate" air or to "filter" air, but from what or to what? None of the fans were vented outside, either for intake or outtake. It was difficult to determine what these fans were actually doing. One had a label of "Hepa" but every vacuum cleaner and fan in the world has the label "Hepa" on it. On the last day of the conference, the fans were shut off, and the side doors to the outside were open. This was the one moment with an "inside-outside" experience, where one did not feel quite so entombed. I wonder how many people besides me got sick in this building?

The first day was the Patients Conference. This set of lectures painted in broad strokes the nature of this illness and the research into it. Comments from patients ranged from it being "a massive overload of information" to "not presenting anything new". The bottom line is that this day performed its function very well, particularly to those new to the illness. They got to see Byron Hyde, Nancy Klimas, Annette Whittemore, Alison Bested, Leonard Jason and Anthony Komaroff. What could be better? To the newcomers, all of this is incredibly fascinating - and this day was very important for them.

The second day featured a bit of grandstanding by the conference organizers. They made a weak attempt to recreate the "lightning in a bottle" of the April NIH confrontation between Coffin and Mikovits - a day that seems so far away now. In spite of the build-up, this was not "the biggest presentation of Mikovits' life". That day occurred in July 2009. There was an aspect of "a chronicle foretold", and the struggle over a gamma retrovirus involvement in ME will continue. Dr. Mikovits' slides can be seen on Dr. Deckoff-Jones' blog here. Dr. Coffin seemed a bit subdued and meandered on his way, with his little bag, presumably back to Boston to see his Red Sox get smushed.

Shortly before this encounter, the audience was treated to an excellent lecture by Dr. Maureen Hanson. This woman has a fine way of delivering a lecture, presenting information in a clear and palatable form, with just enough humor and tantalizing possibilities to keep the listener riveted. Dr. Hanson gave perhaps the best lecture with a cadence and delivery of someone in touch with and at ease with her subject.

The poster papers went up on the morning of the second day - the beginning of the "Professional" conference. I never have been able to understand why the "first day" patients are not privy to this information. Many of the most interesting research items are presented at the poster sessions. Here again there were no chairs to sit down - no chairs for patients who might be in attendance. I assume that these poster papers will be made available on the internet - but you never know with "these people". They sell a DVD set for three hundred dollars, very much beyond the reach of most people. Perhaps the poster papers will be in the DVD but I would prefer to see them online for nothing. InvestinME does something quite different. They sell their DVD for $20, or, if you can't afford it, they give it to you.

There were about 50 poster presentations. The common denominator was that all were underfunded. I took special note of the posters on GcMAF. There were several of them. Dr.Cheney presented the results of a MAF 314 trial in August in collaboration with Dr. Marco Ruggiero. Marc Fremont presented an interesting poster on Redlabs new Metagenomics fecal analyis, which promises to link up with GcMAF treatment in a useful way. Dr. Shoemaker presented a paper on a small trial with VIP. There were several presentations on low NK cell function, as well as various papers on the working of various diagnostic markers. A Japanese team, working with rats, found the bioflavanoid resveratrol regenerated the atrophied hippocampus. (I immediately reached for my bottle.) Rich van Konynenburg had an update of his independent and crucial research. Recently Rich went to Sweden to give a lecture and his three hour presentation can be viewed here. Here the viewer will find "Everything one wants to know about glutathione - and more". Check it out.

There were many other worthy poster presentations that are not mentioned here.

The third and fourth days were filled with a dizzying array of lectures on various subjects. As usual, it was difficult to find the thread. For a full accounting of the research presentations on these days, I direct you to Cort Johnson's site. Currently there are "quick hits", but soon will be more extensive and detailed examination of the presentations. Cort does an amazing job of summing things up and of finding a coherence to the various threads of research that were presented. I noticed that Cort "takes notes". To me, this seems like cheating. No wonder he can put together all this information in a coherent fashion.

Saturday night's banquet featured a talk by Dr. Byron Hyde, the Canadian veteran ME clinician. He gave a presentation on the history of ME outbreaks. Various well-deserved awards were made - to Leonard Jason, Mary Ann Fletcher, Lydia Neilson, Ekua Brenu and Ellen Piro, The winner of the researcher of the year was Nancy Klimas. This was a nice choice, but could there have been a better one, a more fitting one? Yes, there could have. The IACFS could have given it to Dr. A. Martin Lerner. What were they thinking of - to not have done this? (I ran into Dr. Lerner in the elevator on the first day. He was his usual friendly and enthusiastic self - and said that he had a very exciting announcement - ME/CFS is definitely a heart problem - and that he has Holter monitor, and Echo data to prove it. )

The conference was attended by many familiar faces, Klimas, Fletcher, Broderick, Cheney, de Meirleir, Fremont, Lerner, Mikovits, Baraniuk, Hyde, and so forth. However, this conference was also defined by who was not there. Notable figures were missing - for various reasons, some bordering on the absurd. For instance, Dr. Enlander was not in attendance, nor was Dr. Brewer or Dr. Levine, or Dr. Guyer or Dr. Shoemaker or Dr. Natelson or any of the UK physicians. I had hoped to see Dr. Michael Dean or Dr Theoharis C. Theoharides, both of whom attended the NIH conference. No one from the CAA attended. What was that all about? One wonders why so many people did not show up? Some would say that these "absences" had no effect on the success of the meeting, but I would beg to differ.


I tend to focus on clinician/researchers. I suppose this comes from my own sense of urgency - of wanting to get on to treatments. Personally I would like to see a small clinician/researcher-driven conference, more in line with the InvestinME conference. I would like to see more concentrated discussion of treatment options and focused discussions among doctors and researchers who understand this illness and/or have clinical experience. I would like to see more coordinated, structured talks on biomarkers, and a broader, focused discussion of options for treatment trials. The time to do this is now. The Ratna Ling group and the InvestinME conference give us the examples to follow. I would like to lock in a room various people - Brewer, Cheney, de Meirleir, Guyer, Klimas, Bell, Enlander, Myhill, Levine, Peterson, and Montoya - and not let them out until they agreed on something in regards to diagnostics and treatment. I know it is there. Why can't this happen?

There are other important things on which to focus. Many are intent on continuing the search for a viral or retroviral insult with this illness. More are convinced of this now than at any time in history. This is not 1992. The question is how to deal with this, how to move forward with existing or new therapies. Those who think that the final pounding has occurred with HGRV had better think again. Retroviral drugs, in a few people, are working against something. Most likely they are the wrong drugs and the wrong dosage, but there are possibilities in this direction.

I spoke to Dr. Peterson while we were waiting to board a plane in Ottawa. He emphasized that there were now three options for treatment - Ampligen, Rituximab (Rituxan) and anti-virals. (I don't think he was including anti-retrovirals.) And there are other options that he did not mention.

Meanwhile the Hutchins foundation has pledged ten million to study viruses in this illness. Leading their study is the ever-present Ian Lipkin, who has a powerful idea about himself. He certainly has the equipment and the lab to probe deeper into the viral cause. The question is, will he build on recent experience and find what already has been found? I think many people would be perfectly happy if he did this.

Further information:
It looks like the Chronic Fatigue Initiative (despite its terrible name) is going to do some of the studies that the CDC should have done years ago. They’re using both the Canadian Consensus Definition and the CDC’s “empiric” definition. This seems to be a mistake at first glance, but, if they analyze the two groups separately and show that the “empiric” definition doesn’t really define anything, it could be useful.

Specifically, the CFI is funding some important epidemiological research at Harvard. Researchers there will look at a large group of nurses and health professionals that already have been followed for many years to see who develops “CFS” and what happens to them over time. Hopefully, this will provide the longitudinal picture of the disease that has been lacking up to now, as well as insights into predisposing factors. They will examine a large sample of men and women with “CFS” to determine what environmental exposures they have had. This, too, has been poorly understood. Hopefully, they will be able to begin to understand whether viral infections lead to environmental sensitivities or vice versa (i.e., environmental exposures adversely affect the immune system which makes patients prone to re-activation of old viral infections or acquisition of new ones). This population of patients, as well as the group of nurses, apparently has blood available from both before and after becoming ill, so there is the potential to look at what specific triggers do to various blood tests. This could enhance our understanding considerably. One hopes that they will also be looking at geographic and family clusters--if not now, soon.

CFI is also hoping to clarify pathogenesis by recruiting 200 well-characterized “CFS” patients with the help of Drs. Klimas, Bateman, Peterson and Montoya, as well as 200 healthy matched controls. They will collect clinical data and biological samples from the two groups, looking for clues about what causes the disease. They will store the biological samples in a centralized biobank at Duke University. The samples will be available to other researchers for study. Once this database is complete Dr. Ian Lipkin and Dr. Mady Hornig will be using the samples to look for novel viruses or other pathogens. Again, this is a long-delayed effort that is sorely needed and has the potential to be very productive.

Finally, the CFI is establishing a program called Mechanism of Illness that will provide grants for research looking for the mechanisms involved in “CFS”. The first grant is funding a Fellow in Infectious Diseases at the New York Presbyterian/Columbia University Medical Center. It is important to train new clinicians and researchers who will spend their careers studying and treating ME/CFS. We can hope that other grants under this program will advance the understanding of ME/CFS.

The CFI states that its aim is to fund programs which will stimulate interest in “CFS” and result in increasing commitments by other institutions to research. Certainly, the efforts of the WPI over the past two years have done that. We can certainly hope that the CFI will help to continue that momentum.

23 comments:

  1. Thank you for writing this Patient Advocate. but also thank you for previous blogs. You write so well about how it is to care for and be somebody with ME. Like your daughter, my dear partner really has no attending physician. We just guess what to do, what to change etc. It is terrible and all my dr does when I tell her it plainly is nod - she is NZ's so called leading ME dr but she can't be arsed to hot foot it to see my partner in the depth of this illness - yet she makes it to Ottowa to supposedly beef up on the latest info (there never is any latest info that matters to the patients - nothing changes for them - except that another year has gone by and still no-one gets 2 hoots if they are still lying in bed.
    Thanks again, for your blog - I hadn't read it in a while and it has helped me realsie that I am not alone in my thoughts.

    ReplyDelete
  2. Please do not send anyone to Dr. Jones blog it is full of misinformation.

    ReplyDelete
  3. Chris, I always appreciate your blog, but tonight more than ever. It helped to ground me again. What a bizarre week this has been. Thanks for getting down to business. We can always count on you not to get caught up in the drama and hoopla. It is definitely time to get back to business.

    ReplyDelete
  4. Thank you for the report.

    "if they analyze the two groups separately and show that the “empiric” definition doesn’t really define anything, it could be useful."

    Do you have any reason to believe they have any intention whatsoever of doing anything of the sort?

    Wouldn't they just tell us they were using a real definition instead and reserve that part for a single study?

    Has there been any indication that they intend to do that, which goes against the CDC, which few researchers have demonstrated any courage to do?

    And why CCC?

    ReplyDelete
  5. This comment has been removed by the author.

    ReplyDelete
  6. We are living very difficult times... Thanks for this extraordinary report!

    ReplyDelete
  7. Please don't listen to the post about Dr. Jones' blog - it is full of misinformation.

    ReplyDelete
  8. This was a conference of whys. Why was the CAA not there?

    There has always has been good research but it never goes anywhere. Why? It alway claims to be translating evidence into practice. But it ever does. (NK cell findings, circa 1990?)

    It's always about "this illness" or "our illness." Which one? CFS is not an illness it is at best a symptom syndrome which can include many different things. We will not solve "it" or find the cause. Has no more validity than saying X=ABCDE. Find the cause of X.

    "Chronic Fatigue" initiative will study viruses using CCC (ME/CFS) and the empiric def? Hard to come up with the why on this one.

    A valid consistent accurate diagnosis is vital and key to treatment, benefits and basic care. ME is a distinct illness, but that has to be mixed in with CFS, which we allow. There is no such thing as ME/CFS but we still go on and on about it. It is at best a made up term with different meanings and is used to mean different things. We parade around with posters and hold signs about ME/CFS, awareness for whatever we think it is or should be.

    Why a complete blackout of any info on the presentation or session of ICD code changes? This in reality determines the diagnosis. Why was this all done in secret by a "coalition" of very few and presented to NCHS, THEN put out publicly for discussion? Contrary to what this "coalition" claims, what this proposal will do is gut ME, the only valid diagnosis we may have. But we play the ME=CFS=ME/CFS shell game and make up what we believe.

    Next one my as well be on unicorns.

    ReplyDelete
  9. Thank you P.A. It's good to know what happens at these conferences (even if in the end it is not a whole lot!) since most patients are unable to attend or otherwise have access. Your blog is great, thanks for all that you do.

    ReplyDelete
  10. Even if people think that mold is just a trigger for CFS, how can they possibly justify holding a CFS conference in a hotel like this?!?

    If Chris got sick there, I can only imagine how it affected the patients.

    ReplyDelete
  11. Thank you for this excellent report. I am struck by how much is happening in the field compared to the really bad old days. It seems there are areas of research that are actually moving. It seems as though we may well be entering the middling days. I'm hopeful.

    ReplyDelete
  12. Are you sure that the CFI are using the empiric criteria? I'm not. I did see something about them saying they were using the latest CDC criteria. However, the Fukuda criteria (1994) are often called the CDC criteria so perhaps that is what was being referred to - they are not the Holmes et al (1988) but a latter version (hence maybe "latest").

    Also, they were updated in 2003 (Reeves et al., 2003)) so I thought perhaps that is what is being referred to.

    The empiric criteria (Reeves et al., 2005) are a weird version of Reeves et al. (2003)/Fukuda that haven't been used by other researchers I believe (except by Lenny Jason's team when they were investigating the empiric criteria). So I have been hoping that they didn't mean the empiric criteria, but do not know for definite.

    ReplyDelete
  13. Thanks for the report. Too bad about the conference setting.

    Do hope CFI changes it's name and isn't using the empiric criteria, except to show it is invalid!

    ReplyDelete
  14. Thank you for attending and writing about this conference (and others in the past). It helps those of us who are unable to do so.

    ReplyDelete
  15. And if we have an accurate dx of ME, then we would not have to worry about "Chronic Fatigue" initiatives or which "CFS" definition they are using.

    ReplyDelete
  16. Very good summary of the conference, problems and all, but informative.

    I wonder if Dr. Hanson's presentation will be posted anywhere. Her name comes up frequently in discussion of studies of this disease.

    I would really like to hear her talk.

    It's very good that so many studies are going on around many aspects of this disease.

    Even if Ian Lipkin has a lot of self-confidence, he's a smart guy, knows his subjects, and may come up with something. Can't take the ego out of many doctors and researchers, but one can take the scientific breakthroughs if there are any. I'm hopeful.

    Wonder why the CAA and some other researchers weren't there. This makes me nervous that CFS is getting marginalized again or that there are sides being taken -- still; how frustrating.

    I wish researchers could get together, act collaboratively -- instead of competitively -- and share information and do this all in a rational manner, which puts the CFS sufferers first, and not their bravado and competitiveness.

    Oh, to just put science and CFS sufferers first would be a step forward in and of itself. Many researchers do this, of course. It would be good if all did and pooled their knowledge, and went on from a point of cooperation. Then maybe we'd learn something new.

    The Lights weren't there either, it seems. They have found familial clusters in Utah of people with CFS, and also found changes in genetic expression after exercise in CFS patients and not healthy people.

    ReplyDelete
  17. As the 17 million me/cfs patient population increases by 25% every five years, as more of our blood lab workers become ill, our governments are doing what they do so well - kick the can down the road.

    ReplyDelete
  18. The very fact that they are holding the conference in a hotel like that shows that they do not appreciate the severity of the illness at all.

    The main reason I'm posting is that I am wondering what Chris thinks of the National Forum's research and the Hokama ciuatera epitope test and why it is never featured in these conferences.
    http://www.ncf-net.org/

    ReplyDelete
  19. For what reason should we ignore Dr. Jones blog please?
    I have always found her to be very informative in a way patients can understand.

    ReplyDelete
  20. re Dr Lerner comment, that CFS is a heart problem,etc : there is no doubt that it _Causes_ heart problems, but it does not begin as a heart problem. Do you really think that is what he meant?

    and thank you, PA. you are a hero to me.

    ReplyDelete
  21. Yes, about the hotel, it's like getting potato chips on an air flight -- financial corners being cut. Maybe there weren't enough funds raised or allocated.

    How was the conference funded?

    The shabbiness of the hotel does make one pause and wonder about the seriousness of the conference, that and no comfortable, available chairs for people with CFIDS who need them!

    ReplyDelete
  22. Anonymous,
    I take it you have no valid reason for asking us not to read Dr.Jones blog as you neglected to answer my question.
    Misinformation? Please be polite enough to point our these pieces of misinformation.

    ReplyDelete
  23. Thanks for the post!!

    Need home theatre furniture? Ottawa\'s Stereo Plus & Design is responsible for some of the best theatre room design Ottawa has ever seen.

    Lighting Control Ottawa http://bit.ly/okHi4s

    ReplyDelete