Tuesday, March 25, 2014

IACFS/ME - and then Mission Delores

At the end of this year's IACFS/ME meeting I headed out on foot to the Mission District and to visit an old favorite: Mission Delores. Over the years, I have come here often, as well as many of the other missions up and down the coast of California. (The mission system was sort of the CDC of the late 18th and early 19th centuries)

Mission Delores and its cemetery are featured in a mistily mysterious scene in Hitchcock's "Vertigo" - one of my favorite films. I am going to watch it again when I get home.

The day was sunny and warm and the sweet smell of dope wafted through the air in the Mission District - as the locals were seeking their medicinal or medical improvements. Crowds of people flocked to a local park to see a concert of the Rollin' Snows or the Scoobie Doos.

The IACFS/ME conference ended Sunday afternoon. The IACFS/ME conference was four, very long days, running March 20-23. Always I find this conference too long - and too broad in its reach. I suppose I understand why the planners do this, as they have a large constituency to please or honor - but they include so many items that I consider to be auxiliary. To me parts of this conference are like watching a bad movie over and over - or falling to one's death off a very tall building.

I come to these conferences as an observer - to watch and listen. I don't think of myself as a participant, but more of an outsider or outlier. I am in the process of my own illness discovery. I figure that I represent my daughter, who cannot be here.

Over time I have learned to be very selective in going to lectures. This time I think that I went to five. I am happier just looking at the poster papers, and talking to old and new friends. This is my fourth IACFS/ME, and it functions as a touchstone of sorts. I just wish it were more focused. I have learned what a focused conference can be. I saw it at the Stanford Conference, I see it at Mt. Sinai, and I see it every year at the Invest in ME conference in London.

Am I giving a mixed message here? Yes I am giving a mixed message.

Dr. John Chia delivered two important talks. It has been seven years since Dr. Chia's pivotal paper was published showing enterovirus protein found in stomach tissue of ME/CFS patients. No one has followed up with this paper. It just sits there with its weight of ME history leaning on it. Meanwhile Dr. Chia continues his superb research - on his own, in virtual isolation. Dr. Chia gave two talks in a section on "Virology Research", chaired by Dr. Jose Montoya. (I hope that Dr. Montoya was listening.) The first talk was entitled "Chronic pelvic pain (CPP) in patients with ME/CFS is associated with chronic enterovirus infection of ovarian tubes" and the second was entitled "Pathogenesis of chronic enterovirus infection in ME/CFS - in vitro and in vivo studies of infected stomach tissue". Regarding the second study, "Of 24 mice injected with VP1+, and RNA+ stomach biopsies, 2 died in two weeks and13/20 (66%) spleen specimens tested positive for VP1 where 1 of 10 controls tested positive for VP1 by immunoperoxidase staining."

("If they do not believe in death, then what do they believe in?"). Of course there is the possibility that these mice died of sneezing fits - or committed suicide.

There was considerable interest during the question period and Dr. Chia answered a host of questions. He also made a hard-nosed presentation, and defense, of his research over the years, stating that "I have spent considerable time trying to convince people that I am right. Now it is time for others to prove that I am wrong". Perhaps soon we will finally be able to answer this question, whether Dr. Chia is right or wrong. I am betting on his being right.

Dr. Maureen Hanson's team gave a talk, "Plasma cytokines in ME/CFS patients and controls before and after a cardiopulmonary exercise test." Dr. Sonya Marshall-Gradisnik's team gave a presentation on NK cells. There has been a string of exciting research coming out of this lab.  Dr. Gradisnik will also be making a presentation in May at the Invest in ME conference.

It seemed a great oversight that Dr. Carmen Scheibenbogen was not giving a talk or a poster paper. I don't think she was even here. I could say the same about other UK or European researchers. Nothing was presented or mentioned about Dr. Joseph Brewer's recent work in mycotoxins. This seemed a slight oversight. Dr. Brewer made a recent presentation at the Lyme conference in October and will follow up at the next ILADS conference. So someone besides myself must know of his existence?

Where were research concerns involving gut ecology, the metabolome, mitochondria, lipid membranes (Yes, it was great to see Dr. Garth Nicholson's poster paper), mycotoxins and a host of important subjects? What world do these people live in? What illness are they studying?

The strength of this conference lies in its poster papers. This year there were several exciting presentations. I took note of Dr. Maureen Hanson's gut biome study in ME/CFS. Dr. Hanson will be giving a talk at the Invest in ME conference this May. She will be able to trade notes with Dr. Simon Carding, who is also working on a gut biome study in ME/CFS. Dr. Hanson reminded me that her colleague, Dr. Ruth Ley, works mostly in the gut biome arena. Incidentally, there seems to be a percolating effort to have ME/CFS patients do their biome study through Ubiome. The objective would be to publish their own biome study. Is this a good idea or what? - and it all sounds vaguely familiar.

There was another study out of Griffith University of the team of Dr. Sonya Marshall Gradisnik. Nancy Klimas and her group had an entire host of poster papers. I hope these poster papers become readily available.

The most interesting poster papers were two by Dr. Paul Cheney. Dr. Cheney has always contributed one or two important poster papers. One yearns for Dr. Cheney to be given a chunk of time to make a full presentation of his ideas. Dr. Cheney does best in three-hour slots of time, so he could have a morning session, a break for him to rest for a half-hour (but does he need it?), and then an afternoon session. This could go on for two or three days. And then maybe we could have a comprehensive conversation of what might be happening in this illness. But, of course, this is not going to happen. Instead we have to content ourselves with Dr. Cheney's self-published studies, and with Dr. Cheney's riveting explanations in front of his poster paper. He gives it willingly and repeatedly.

Asked what he does for his patients, Dr. Cheney says that "he stabilizes them".

I witnessed a few snippy engagements and comments, which are always interesting to me - and which I will keep to myself. I watched old adversaries be cordial and even respectful to each other.

The conference awards dinner had an especially good feeling to it. Nancy Klimas got a top award, which she certainly deserves. Dan Peterson gave the Keynote Address and took us on a stroll down memory lane. He described the history of IACFS/ME meetings, in the process recognizing many individuals in the audience, including Hillary Johnson, the gifted writer. Dr. Peterson showed a short video with 1990's video snippets of the early heroes in this struggle - Komaroff, Cheney, Bell, Klimas and Peterson himself. It was a hoot to see Nancy Klimas as a young clinician/researcher. This video was a lot of fun. Dr. Peterson has a special skill, either natural or developed, of getting the flow going in a positiive direction.

I was surprised, really surprised - and pleasantly surprised - to see Pia and Richard Simpson of Invest in ME receive an award. Never were there two people who have less interest in awards. Instead, they are interested in science - and money to fuel research. So if you have extra money, after giving to John Chia's EV Med Research, write a big check to Pia and Richard Simpson and Invest in ME.

Now that Richard and Pia have been recognized by IACFS/ME for their stupendous efforts, maybe the steering committee of the IACFS/ME group can select a group of "Important People" to actually make the journey to the upcoming Invest in ME conference - and thus learn a bit about how to organize a meaningful conference.

One thing that always, always irritates me about this IACFS/ME conference is the lack of attention to the severely ill. In fact, I have trouble connecting the severity of my daughter's illness with anything that happens at this conference. I do not think that most of the people who attend this conference have the slightest clue as to the true nature of this illness. They look at the half-sick, always at peak times, and draw their conclusions - if they only did a little more exercise.

And it is my belief that they do not want to know. I have observed the displeasure incurred by Dr. Kenny De Meirleir at an Invest in ME conference for presenting videos of very seriously ill patients from Norway, and for the testimony of a young woman who lived in the same house with a severely ill sister and had not seen her sister for four years. And then there is the whole anxiety about showing Voices from the Shadows. It is a very profound and great video, but it is seen as a downer. Well, this illness is a downer.

There is something so frightening about the core of this illness - from which almost everyone turns away. A little of this "ground zero"can be seen in Natalie Boulton's and Josh Bigg's extraordinary film. Dr. Montoya had the wisdom, the courage to show "Voices" at the Stanford Conference. (Dr. Montoya understands, he has learned this.) These totally isolated human beings hold the key - or a key - to the essential nature of this strange and devastating illness. Why are they not studied? Why does everyone turn away? Can we move forward if we are a bunch of cowards? If one is careful, blood, urine, saliva and feces can be removed from these patients (in some cases). If one wants to know what tests to do, I and others can tell you.

The efforts here at the conference and elsewhere to engage or embrace the severe ME patient is pathetic - really pathetic - and this means something.

Maybe this is all an age-related problem? Maybe I am just unable to see all the connecting parts at this conference and put them together? I will have to ask others, back in NY, like Jay Spero, if this is the problem, if this is my problem. In the meantime, I am in a hurry. I am not interested in the one-hundred year fix. I am less interested in stasis and more interested in dynamism, as reflected perhaps in what Dr. Skip Pridgen announced yesterday. Was Dr. Pridgen at this conference?

A number of serious clinicians did not go to this conference - Dr Eric Gordon, Dr. Kenny De Meirleir, Dr. Ritchie Shoemaker, Dr Derek Enlander, and Dr. Joseph Brewer. One has to ask why?


  1. Thank you for your interesting post on IACFS, I lived in San Fran/the Bay Area off and on in early-mid 90s, so this resonates for me in more ways than one. At that time, my brother was doing his PhD at Stanford and had med student friends, also at Stanford, they regarded me with curiosity, the Scottish girl with the strange illness. None of them had heard of actual 'ME' - the Lake Tahoe 'mystery illness' was sometimes vaguely mentioned, but not really in connection with my own illness, which had been triggered by Coxsackie b4 virus in early 1980s in west of Scotland. I was diagnosed in early 1984 by neurologist Prof Peter Behan, with what is now known as Ramsay-defined ME. I was severely ill and 30 years on I am moderate with severe dips. It is so gratifying to know of Dr Montoya's research. And I am of course interested in Dr Chia because of his enteroviral work. I am so very pleased that Invest in ME got an award, their work is sterling and gives hope to those of us in UK.

  2. Donations to Dr Chia's research should be made to EV Med Research, not to the EV Foundation. I contacted his office directly to get donation info, Andrew wrote me a very nice e-mail in reply stating that donations would directly fund the reagents needed to further the work. The lab is also looking to fill for a number of positions from scientist to technician


    EVMED Research
    25332 Narbonne Ave
    Suite 170
    Lomita CA 90717.

    Office (310) 534-9700
    Fax (310) 534-9701

    Generation Information



  3. As a person who is severely affected by M.E., I am cheering from my bed! Someone (you!) has noticed that I and other severe sufferers exist! We are hidden, isolated in our beds an no one even admits that we exist. I do not understand this avoidance of severely-affected patients in M.E. In other illnesses, the severely affected are the first ones studied--to see the most severe effects of the illness. But in M.E., we are hidden away and ignored, as though we are too horrible to contemplate. I agree with you, this means something. I think it means that our very existence engenders that overwhelming fear that something this life-destroying can happen; and if it can happen to us, perhaps it can happen to the readers' and researchers' and clinicians' families and friends too. I think we are avoided because we are examples of what can and does happen, and people simply do not want to think about it because then they might have to consider that it can happen to them and to their loved ones.

    Patricia Carter

  4. What I am most concerned about now is that some doctors, such as Komaroff, Lapp and Klimas, with the assistance of so-called "patient" groups like CAA and PANDORA, are now in the process of convincing the government and our medical professionals that what M.E. patients really need--and it will be applied to all of us--is CBT and GET. Therapy and exercise may help someone who suffers mildly from M.E., but it would kill me--and thousands of other severe sufferers.

    Patricia Carter

    1. Patricia:

      Dr. Komaroff stressed that CBT does NOT help ME/CFS. He said a study found it made 26% of people worse and only 7.4% better.
      GET also was denigrated by one or more of presenters at patient conference.

    2. "Begin an exercise program in which you gradually increase your activity level. This can effectively reduce the severity of your symptoms."

      "Cognitive behavioral therapy (CBT). CBT is a type of psychotherapy. It helps you identify and change negative thoughts and behaviors. CBT can reduce symptoms."

      The above ran in this column on March 21st, during the conference.


      So he said one thing at the conference, yet that ran under his byline in newspapers all across the country.

      Jay Spero

  5. get the wheel chairs and hospital beds lined up and loaded with the severely ill...I know it would be very very difficult but these folks need to be seen by the people studying this disease. We must not be so passive!!! Yell ..scream ..fight god dam it!!

  6. A different Anonymous: Better yet, bring the testing to the patients... wheelchairs and hospital beds (and all the environmental stimulation associated with that) would induce severe and possibly life-threatening relapse in patients who are already severely ill.

  7. Love seeing different perspectives. I was there, but due to my own illness, I only saw about a third of the presentations. Wasn't there a section of the program to discuss the severely ill? I know I missed it. But I thought I saw it on the agenda. Also, as you know, Pridgen is from Alabama. I invited him to go. He said his research results wouldn't be finished yet and he didn't want to present anything until the study is published. I encouraged him to go to learn from the others, broaden his knowledge base. He said everything will change with his study results. He said Bateman, whose clinic is participating in the trial, would be there.

  8. I appreciate that you took the time and interest to go to this conference, observe and report. As a ME sufferer-thankfully not yet housebound- I have recently been much more active as my own advocate. For me, this consists of reading as much as I can, when I can, on the research being done, blogs by sufferers and participating in the blog HealClick. I re-blog any items I feel will give others a glimpse into this devastating illness. It may not be much, but it is better than nothing.

    Keep up the good work - I wish you and your daughter the best.

  9. I believe the unwillingness of governments to fund M.E. research drives the lack of research on the severely ill. Give out the $140 million in grants that MS gets from NIH this year and there will be plenty of research on severe illness. Or how about the $2.2 billion Dr. Fauci will spend on HIV this year alone?

  10. Chris,
    Thanks for the compliment (I like the way you write, too), and thanks for attending the conference and communicating your concerns about it. I sometimes find myself falling into steep depressions at IACFS conferences and there are numerous reasons why that might be, but mostly frustration with the pace of this particular group of scientists, the half-spoken and unspoken truths that float by in the atmosphere, as if fear of not-getting-government-grants has taken over as its own disease to vie with M.E.; or a giant like Paul Cheney being relegated to poster sessions (because he displeases the CDC?); and more. I think you focused on an important issue, however: the continued failure to study the most sick. Don't know if you attended the session on "difficult patients," a fixed feature of this conference. Instead of the patients you describe, the "difficult" patients seemed rather mild, and one of them was classed as difficult for the reason that he was "angry." This generated a lot of amusing discussion including one doctor who said she had worked on a psych ward and advised the doctors in the audience to get five people involved, two for the legs, two for the arms, and one for the head. Blowing off steam, I suppose, but chatter that is such a far cry from a truly "difficult" patient--one who cannot move, cannot eat, cannot bear the weight of a sheet upon her body. Everyone knows these patients exist in significant numbers and your observation that IACFS acts as if it simply cannot face or examine their reality, rings true. Another factor in play may be CDC's insistence that M.E. is actually a lot of little "subsets" (reductionism) instead of a major disease with a continuum of severity (as is a widely recognized feature of most diseases) the most seriously ill are considered, sotto voce, to have a different disease. Or, they are assumed to be unrelated to the patients these doctors see day to day. And yet, common sense suggests they could tell us the most.
    Agreed: Dan Peterson's raucous "IACFS, past, present, future" extemporaneous speech was both a gracious gesture to many and oftentimes, a hoot.
    Lastly: utterly tragic that CDC was ever involved in the discovery process.
    Hillary Johnson

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