Dr. Joseph Brewer and Mycotoxins, an update

Dr. Joseph Brewer of Kansas City was one of the physicians who did not attend the recent IACFS/ME conference. Dr. Brewer is an infectious disease doctor who has been working with AIDS, Lyme and ME/CFS patients for a very long time. Over the years he has become interested in various treatments for ME/CFS - and has been open to thinking about associated subjects such as Mitochondrial impairment (or down regulation) or Mycotoxin involvement - to describe two of his recent interests.

About two years ago now, Dr. Brewer stumbled upon Mycotoxins and their potential involvement in ME/CFS. Dr. Brewer and his associates, Dr. Thrasher and Dr. Hooper, published their first paper on Mycotoxins and ME/CFS in April 2013. It can be view here. In this study, Dr. Brewer reveals finding 93% (104 of 112) of his patients positive for one of three mycotoxins (there are hundreds of mycotoxins) through a test at Real Time Labs in Carrollton TX. 55 controls yielded no positives.

The Real Time Labs test is a urine sample for Ochratoxin A, Aflatoxin and Trichothecenes (MT). (Real time labs will soon have a blood test for gliotoxin, a mycotoxin associated with Aspergillus.) The initial test costs about $700 and appears to be partially reimbursable. On Dr. Brewer's initial study Ochratoxin A showed up the most, although a good number of patients had more than one and some had "the trifecta" - of all three. Dr. Brewer feels that mycotoxins are not good for patients to have in their bodies -  and that they represent a major factor in their ME/CFS illness.

Dr. Brewer reports that these mycotoxins impair mitochondria function and interfere with cell membranes. Loss of mitochondrial function can cause detoxification problems with other toxins. Poor detoxification might have something to do with clinical response.

Dr. Brewer's previous experience with mold or mycotoxins was non-existent. He is an infectious disease doctor who looks for bugs and tries to kill them. In no way can Dr. Brewer be described as a "mold doctor".

In December 2013, Dr. Brewer, Thrasher and Hooper published a second paper on Mycotoxins and their connection to chronic illness - "Chronic Illness Associated with Mold and Mycotoxins - Is Naso-Sinus Fungal Biofilm the culprit?" In this study they laid out their case based on examination of existing literature, citing case studies.

Faced with this high percentage of his patients with potential mycotoxin involvement, Dr. Brewer was both surprised and perplexed. He began treating some of his patients with heavy duty anti-fungal infusions. In time, again through researching the literature, Dr. Brewer concluded that the most likely reservoir for the mycotoxins was the sinuses. This involved a bit of guesswork. It is Dr. Brewer's thesis that these mycotoxins get into the body and colonize in the sinus. Once colonized and protected by a biofilm, the body cannot get at them and they just stay there forever. It is his belief that they have to be rooted out. He finds in his patients that the exposure can be from the distant past, up to 20 years ago. From Dr. Brewer's point of view, focusing on the sinuses in no way excludes other reservoirs harboring the mycotoxins - the gut, stomach and lung.

Dr. Brewer began treating his patients with nasal Ampho B - and he started getting results. Dr. Brewer works with a nasal drug delivery company called ASL pharmacy. They have a nasal delivery system called Nasa-touch which atomizes the medicinals. In time Dr. Brewer added another nasal drug to bust up biofilms that he believes are harboring the mycotoxins. This is nasal EDTA in combination with surfactant, an ingredient in Johnson's Baby Shampoo.

Two side effects of this treatment are noted. One is that the Ampho B can cause nasal irritation and even mild nosebleeds in a few cases. The second is that the treatment often causes a strong herx reaction as the mycotoxins are exposed and the drug kills them. In both situations, Dr. Brewer moderates or cuts back the treatment and all cases have been manageable.

Dr. Brewer has been surprised, astonished really, by the results of treatment. In his first 100 patients treated, 70% showed improvement, including six whose symptoms completely resolved, including all symptoms of their larger illness.

With treatment, the successful patient's urine Ochratoxin A will go down to zero in a matter of some months. The Trichothecenes (MT) takes longer but it too will diminish with treatment.

Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.

Dr Brewer has continued testing and treating more patients. He has now tested 350 patients, 325 of whom are positive for one or more mycotoxins. More Trichothecenes (MT) have been showing up recently in his patient population. He is now treating up to 200 patients and I believe another paper will be coming out soon. Dr. Brewer reports that those patients who have fully resolved and ended treatment tend to relapse and have to go back on treatment.

Dr. Brewer's absence at the recent IACFS/ME meeting has already been noted. How could this happen? How could the emergence of a target for treatment not be acknowledged at this conference? This is all the more unusual in that Dr. Brewer published his first paper a year ago and then gave an exciting presentation at the Lyme conference in October 2013. In this situation, there seems to be a target, a treatment that is relatively benign - and Dr. Brewer is getting results. Doesn't this warrant more attention? Wouldn't it be interesting to find out what is happening here?

Of course, in spite of this, there was quite a lot of discussion of the subject of Mycoyoxins in the hallways of the IACFS/ME conference.

Regarding mycotoxins and ME/CFS we have to ask some questions. The most obvious one concerns the validity of the testing at Real Time labs. At the moment this seems the only lab that does mycotoxin testing. Dr. Ritchie Shoemaker has not been overly excited with this test, or with the idea of nasal colonized mycotoxins. If it isn't mycotoxins that are being knocked out, what is the activity of Dr. Brewer's treatment? A 70% response rate of over 100 patients is impressive. Dr. Brewer himself says that he has never seen such success with a single treatment.

Meanwhile other physicians are beginning to test their patients. A West Coast physicians group has tested over 100 ME/CFS patients for mycotoxins at Real Time labs - and are getting the same high positive results. Preliminary reports on Dr. Cheney's testing of his patients also indicates a high positive response, especially for Trichothecenes. Even Dr. Ian Lipkin indicated that mycotoxins were dangerous, and warranted looking at in ME/CFS. Other physicians, Dr. Chia, and Dr. Enlander, are aware of Dr. Brewer's work and have been encouraged to test their patients.

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?

Mt. Sinai ME/CFS conference – November 20, 2013

The second conference at the Mt. Sinai ME/CFS Center was held on Wednesday, November 20, 2013. (The first conference was two years ago.) This year’s conference was an upbeat, almost exuberant affair, a set of fine lectures capped by a question and answer period. Dr. Derek Enlander organized the conference and presided over it with his usual charming and respectful guidance.

Various people, patients mostly, spoke positively to me of “the focus" of the conference and of the variety of information that it presented. Of course the packed room included many of Dr. Enlander’s patients - but there were also patients of Dr. Peterson and, I presume, of Dr. Klimas. One had the feeling that a number of the attendees had not previously attended a conference like this. At the end of the day it seemed as though many people did not want to leave.

A number of factors coalesced in this particular situation. Dr. Enlander, the sponsor and originator of this conference (aided mightily by Dwight Merriman, a major donor), is on the faculty of Mt. Sinai. This important medical center in NYC promotes the Mt. Sinai ME/CFS Center, which, in turn, is a huge platform upon which to operate a conference venue and to project information about this illness ME/CFS.

The speakers, limited to five, included clinicians and researchers.

The first speaker, perhaps the most dazzling (in the general sense), was Dr. Eric Schadt. If you want to be amazed, check out this talk from the last conference, recorded by my son Peter Cairns. Dr. Schadt has big plans for data assembly and manipulation. He works on various projects with various collaborators, all at the same time. Dr. Schadt, always dressed informally in his own private uniform, seems to be in a hurry. One wonders how much he knows about ME/CFS - and the feeling that I get is that he applies a schema from an allied chronic illness to ME/CFS. Nevertheless, he laid out various immensely complicated networks of disease, explaining the complexities and “perturbations” (a great word) along the way. It was all quite exciting. One wonders how much he works on our illness - and the big question is, how can we get him to do more work on ME/CFS? He seems propelled in a direction that would be extremely helpful. Certainly he is not lacking in enthusiasm, and is brimming with confidence.

Of particular note was his work with a technical collaborator, Dr. Joel Dudley, to find a drug for an existing illness (IBD), using their computational techniques. Through their elaborate process Joel Dudley identified Topiremate, an anti-seizure drug, to treat IBD in rats. No one previously had come close to thinking of using this drug for IBD. In another instance a previously unassociated tri-cyclite drug was found to be effective in a certain lung cancer with the results being published in Cancer Discovery.

The implication is that such a drug discovery process could be applied to ME/CFS. My suggestion would be to have Dr. Schadt and Dr. Dudley work on a drug-targeting project for ME/CFS, something that might be both quick and specific. For instance, imagine the possibilities if Dr. Schadt’s technology could interrogate particular cell lines from a tightly constructed cohort of ME/CFS patients.  

 

Next up was Dr. Judy Mikovits, who gave another of her amazing “outside of the box” lectures. It was also a surprising lecture, at least to me, who was not expecting her to touch on this subject.  But this is a wonderful thing about this researcher – she goes where she wants to go and always with the patients in mind. The reader might remember that Dr. Mikovits was jailed two years ago as she prepared to come to NY to give a presentation to the first Mt Sinai ME/CFS conference. At that time a great pall descended on this well-attended conference, as most conference attendees reacted with deep sadness to the very astonishing strangeness of the jailing of a researcher.  At least for this second Mt. Sinai conference day, many participants were pleased to see Dr. Mikovits speak – and it was a triumph, another masterstroke of Dr. Enlander. In fact, many of the attendees had come exclusively to hear Dr. Mikovits’ talk. I was among them.

Dr. Mikovits, without a job and without money, has continued over the past several years to attend professional conferences (cancer, GcMAF, mitochondria, lipid, lyme, ME/CFS) and to unleash her immense curiosity in the direction of this illness. She makes unusual, dynamic and wide ranging observations. We need to have more minds like hers at work towards our betterment.

Speaking of curious and fine minds, it was just a year ago that my friend Rich van Konynenburg died.  He gave a fine presentation at the last Mt. Sinai conference and his presence today was and always will be sorely missed.  Two years ago, Dr. Enlander showed his stripes by inviting Rich to give his first, or one of his first, presentations at a major conference. For years, I had observed Rich get marginalized in various situations –and his important ideas relegated to the periphery of conferences - but he always persevered. He was a wonderfully gifted and intelligent man, and when I think of his absence I want to weep.

Dr. Mikovits chose this moment to revisit an old topic, a topic that for all intents and purposes was seen as having been put to bed.  Dr. Mikovits’ lecture was an update on events since the Lipkin paper on XMRV. In today’s lecture, Dr. Mikovits presented various papers, some older, some newer that – and in a straight-line fashion - strung together the case that allowed the door to be reopened on a retroviral fingerprint in this illness. It was quite a talk, adjusted to the audience level, but still difficult to absorb. 

Towards the end, Dr. Mikovits touched briefly on one of her recent investigations - aberrant mitochondrial workings at the genetic level. She is investigating genetic testing for indications of secondary mitochondrial dysfunction that has shown up in a few ME/CFS or ME-like patients. Courtagen is the company that does this testing. This test might very well identify an important part of this illness - with the possibility of immediate treatment. The medical director of Courtegan is Dr. Richard Boles, whom I had heard about several years ago from Dr. Joseph Brewer. Dr. Boles is an innovator.  The hope is to form a collaboration with Courtagen, where they would run a small trial on severe ME/CFS patients.  

To me, Dr. Mikovits has the most “out of the box” thought process in this illness world.  In order to move this along, I think she needs to have more input into future conferences.  Like Rich van Konynenburg, she has “a feel for this illness”,  much of it springing from her work in cancer.

Dr. Mikovits and Dr. Schadt should have the opportunity to sit down for extended talks. Together, with the help of others, they might be able to crack a part of this illness. 

By lunchtime, we had had two lectures – the amazing and the surprising. What could be a better start?

The remarkable Hillary Johnson, author of "My Mother Ruth", came to me in the middle of the conference and said that it reminded her of the Invest in ME conference in the UK, both in its ambience and its seriousness.  Hillary was spot on. The Invest in ME conference is patient driven, which almost guarantees intensity and focus. These UK folks, primarily Richard and Pia Simpson, make things happen, without all the attendant crap of an ME/CFS Industry conference. If one wants to run an effective, hard-hitting conference, I would advise following the Invest in ME  model.

Dr. Derek Enlander has done this.  Perhaps it is inadvertent - but this Mt. Sinai conference had the same combination of clarity, variety, limited bullshit and consolidation of different aspects of research and treatment.  Could the conference have been improved? - Yes, it could, but it was an amazing effort as a second conference - and this bodes well for any such future endeavors.

The lectures after lunch were directed towards clinical practice.

Dr. Dan Peterson gave the first presentation. Each time I hear him give this talk, he seems to reach a higher level of eloquence concerning an array of difficulties of this illness. Dr. Peterson appears to me to want to be as clear as possible regarding his treatment of virally reactivating patients. These patients, clearly identifiable, represent 15% of his patients. I believe that he is mindful of his legacy and wants his lifetime of work to be continued by others. Of course this is a noble sentiment. He touched on Ampligen, Vistide, and Valcyte, all heavy-duty anti-virals that sometimes bring near complete recovery to selected patients. Of course the drugs work extra magic in his hands, as he has such a feel for this. I have personally met patients undergoing these treatments who have returned to work. Towards the end, Dr. Peterson confessed that he and his colleagues at large (clinicians) have not given or not been able to give proper care to these very sick and disabled patients. There was a sense of humility in what he said, something that you do not hear expressed very often.

Dr. Derek Enlander himself gave his usual polished, informative presentation, outlining his treatment protocol that has brought so much success to many patients. The room seemed to be full of his patients, in various stages of recovery.  Dr. Enlander presented a brief view of his upcoming research into the limbic system and announced a Spect Scan collaboration with Dr. Byron Hyde. These isotope scans look like they could be a new insight into the limbic system. Do not be surprised to see Dr. Hyde on the next conference program.

The last speaker was Dr. Nancy Klimas. Earlier in the day, she had been at a CFI think tank discussion at Columbia - and thus missed most of the day’s presentations.  She started her talk by promoting the new Neuroimmune Center at Nova University in Florida, which she heads up. Dr. Klimas has recruited various top-notch people from around the country including Gordon Broderick, one of my favorite researchers, and another, Mary Ann Fletcher, who had the guts to speak up in defense of our favorite advocate Eileen Holderman at the last CFSAC meeting.  I have always appreciated Dr. Fletcher’s work, but my opinion of her rose sky-high in these few revelatory seconds.

This is some enterprise that Dr. Klimas has consolidated - and let us hope that she can move things along, particularly in terms of research. She has a knack of getting grants, particularly through piggybacking ME/CFS onto Gulf War illness research.

Further into her talk, Klimas spoke about various immunological aspects of this illness. I have seen variations of this presentation quite a few times now, but for many in the audience this was a new and exciting experience.  Personally, I have never understood her cytokine profile - and the great difference between it and the separate efforts conducted by Dr. Montoya, Dr. Lipkin and Dr. Mikovits. For instance Klimas does not seem to pick up elevated IL-8 in her patient cohort.  To me, elevated IL-8 is almost a signature in itself of this illness. Conversely, she routinely gets elevated IL-5, which is almost non-existent in other ME/CFS cytokine panel cohorts studied. This makes one wonder what she is seeing and in what patient group.

Lost in the shuffle of the last few years is the cytokine profile that came out of the WPI in 2011. In spite of its attachment to the defunct XMRV, this profile functions equally well if the letters XMRV are removed. This study certainly gave impetus to Dr. Jose Montoya in his search for a signature, and I am convinced that Dr. Ian Lipkin’s cytokine work is going to reflect a similar signature, or at least be something built on the WPI work. How could it not be?

Dr. Klimas went on to claim that we have, virtually, a biomarker in this illness right now.  I found this somewhat disingenuous, and I do not think many people actually believe this. Certainly we can look forward to Dr. Jose Montoya’s studies in this regard, which will be presented in time. Dr. Montoya has told me that he continues working on this, is making progress, but that he “wants to get it right”.  Also we can look forward to publication of Lipkin’s work on cytokines that should emerge soon. Most important to me is the work on NK cell and other immunological markers, a potential “fingerprint” of this illness, coming out of the work of Dr. Sonya Marshall-Gradisnik and Dr. Don Staines at Griffith University in Australia. I have written on some of this elsewhere.

Dr. Klimas went on to complain about replication and promoted the idea of “you replicate my work and I will replicate yours”. To me, not having replicating studies in ME/CFS is a big problem. In my opinion the first and foremost trial to try to replicate is Dr. John Chia’s 2007 study on enteroviral involvement. Not having an attempt to replicate Dr. Chia’s findings actually interferes with progress towards a solution of a significant part of this illness. It has great negative consequences for patients.  Dr. Chia is left entirely to conduct this research on his own. Dr. Klimas should try to replicate Dr. Chia’s work - and then we can turn later to replicating something of her lab.

It was great to hear the various clinician attitudes and nuances for treatment – the more the better as far as I am concerned. One longs to hear others - especially Drs. Cheney, Chia, Brewer, Gordon, and Horowitz. And then there are other outside of the box researchers - Richard Boles (mitochondria), Robert Naviaux (metabalome), Patricia Kane (lipid membranes), John McClaren Howard (mitochondria, lipids), Marco Ruggiero (GcMAF) and others. 

There was a short question period at the end of the conference with the various presenters as well as Frank Ruscetti, Ashok Gupta, and Christian Becker. The panel ended with various questions to and statements or answers from the panelists.

Marian Lemle asked a question about her hypothesis that H2S plays a major role in ME/CFS and whether anyone made a connection with this. She must have been pleased that Dr. Enlander mentioned sulfur metabolism. From what I could see, Marian drew a blank from the rest of the panel. Her thesis is a good one and should be pursued. 

Howard Bloom made an eloquent statement about being locked in a darkened room for five years with this illness – and the attendant emotional catastrophe of total isolation.

Dr. Frank Ruscetti, fielding a difficult question about government (NIH) support for this illness, gave a fine, partial answer (by necessity) that concluded with his belief that funding for this illness will have to come from private foundations. I could not have agreed more and what he said was very important - coming in the final minute of the day. So this was a great conference from the first minute - to the last.

It is my opinion that the question period could have been extended for another half hour. There were at least ten people with hands raised when the conference ended - and the interest to engage the panel was growing. Many patients husband their energy and resources to get to this conference, and for them it is a precious moment, a unique contact with individuals that are elevated in their minds.  Patient questions are generally well articulated and diverse, polite and interactive. It is my belief that things –ideas, insights - come back the other way too and in unexpected fashion. I hate to say it, but panel members also need input - and some of these articulate patients might harbor insights that are useful to others, especially to medical practitioners. As far as I am concerned, they can never know enough about this disease and its peculiarities - and where else to get it but from the horse’s mouth. 

Yellow Soup

There was another fantastic and interesting article on Dr. Alexander Khoruts today. It appears in City Pages, is entitled The Forgotten Organ (Mysteries of the Microbiome) and was written by Chris Parker. This fellow Dr. Khoruts, based right here in Minnesota, amazingly, is, along with Dr Thomas Borody, the most dynamic individual in this emerging field.

He took a 14th century idea, known as Yellow Soup, and updated it to the 21st century. Many people are standing back, wondering how such a "Progressive idea" could emerge in our own time. (This is a bit of a joke.)

I first read about Alexander Khoruts and his work a good number of years ago.  He is right here in Minnesota at the University of Minnesota. He is a world leader in fecal transplantation and it is exciting to have him working so close by to where I live in Minnesota. Minnesota is not known to be a state that is aware of or gives legitimacy to ME/CFS (an understatement), so the possibility that a treatment for ME/CFS might emerge here is welcome news.

Here is an article on Dr. Alexander Khoruts, from the Guardian. As usual, the comments are interesting and informative.

A more immediate scientific observation regarding short term fatty acids in the gut can be found here.

Mount Sinai ME/CFS conference - November 20, 2013

Dr. Derek Enlander is chairing an ME/CFS treatment conference at Mount Sinai in New York City on Wednesday, November 20, 2013. This one day conference will include presentations by Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Dr. Enlander himself. A panel discussion including the speakers as well as Dr. Frank Ruscetti and Christine Becker will occur at the end of the day. The emphasis will be on communication and interaction.

(The conference takes place in the Academy of Medicine, 1215 Fifth Avenue. Registration fee is $150 for physicians and $50 for patients. The conference runs from 11-4.)

It is my obervation that this conference is an outgrowth of a Simmaron research discussion held prior to the ME/CFS FDA meeting in May. At that time, Dr. Dan Peterson generously organized a pre-meeting open-format treatment discussion involving both Dr. Klimas and Dr. Enlander, along with a number of other clinicians, researchers and patients. The discussion was a lively one, and free-wheeling, just the kind of discussions necessary to push ideas along. Dr. Peterson's early morning meeting was the only item of real interest at this FDA conference and it is my feeling that this Mount Sinai conference is an attempt to build on that Simmaron discussion.

This is the second conference arranged by Dr. Enlander and the ME/CFS Center at Mount Sinai. Dr. Enlander is one of a very few physicians who is attached to a major university hospital doing research on this difficult illness. The last Mount Sinai ME/CFS Center conference was held two years ago and featured several very powerful and important lectures. Foremost was a talk by Dr. Eric Schadt that can be found here. Additonally Rich van Konenynberg gave a fine presentation on his mehtylation blockage/glutathione depletion ideas. Rich, who died a year later, is sorely missed by the patient community and many others who experienced the very rare character of this man. Rich's fully articulated three-hour lecture in Sweden can be found here. Dr. Kenny De Meirleir's often referenced talk on GcMAF can be found here. Dr. Enlander himself gave a fine presentation of his treatment strategy.

It is well known that Mount Sinai received a generous research gift from one of Dr. Enlander's patients, thus fueling the ongoing ME/CFS research at this center. It is less well known that these conferences at Mount Sinai, with all their very great importance, are constructed on a shoe string. It is time for someone else to step forward and help with this conference, especially considering the reality that very few of these kinds of discussions are ongoing in the field of ME/CFS treatment. This conference has very great potential to expand and ignite substantial treatment discussions - but someone is going to have to help Dr. Enlander in order for this conference format to reach its full potential.

For those readers who are not familiar with Dr. Enlander, here is a short radio interview with him.

ILADS/San Diego

I am heading to San Diego for the ILADS conference on October 18-20. ILADS is a four-day conference on Lyme disease, its diagnosis and treatment. ILADS has their own dogma, attached to the long term use of antibiotics in treating Lyme and its coinfections. This is a long and large conference - and it has the feeling of representing "an Industry". It is always well attended by practitioners or researchers who have a big stake in the Industry (Professionals). In this way it is very similar to the IACFS/ME conference that is held every two years. Both conferences take a very broad approach in attempt to represent various constituencies.  The results are mixed - as this approach to conferences always lacks focus.

Patient-driven conferences like Invest in ME or the Physician’s Roundtable are completely different. There is no Industry to be supported. The Mount Sinai ME/CFS conference in November 2011 also took a more focused approach both in terms of subject and duration. There will be another Mount Sinai ME/CFS conference on November 20 chaired by Dr. Derek Enlander and including Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Enlander himself.

At this ILADS conference I will try to ferret out what I can, what is useful to me.

I am very interested to hear Dr. Richard Horowitz lead a section on treating multiple infectious diseases. This will be an extended preview of his book “Why Can’t I get Better? – Solving the mystery of Lyme and Chronic Disease”, which will be available on November 17.

Dr. Horowitz takes a broad view, embracing the complexities of these difficult illnesses with an umbrella framework that includes both viral and bacterial infections. He tries to think outside of the box and has shown a great curiosity over many years now. A recent lecture can be found here sponsored by Xymogen. In spite of the commercial aspect of this presentation, it advances his basic notions.

Dr. Burrascano will give an update on the Advanced Labs culture test. This is an important test and the CDC seems to want it to not exist.

Dr. Joseph Brewer will present a lecture on mycotoxins involvement in ME/CFS and his ongoing ideas of how to treat this. To me this is an important subject and I look forward to hearing Dr. Brewer.

Eva Sapi will provide an update on her Biofilm research.

Dr. Andy Kogelnik of the Open Medicine Institute will give a talk entitled, ”Clinical Research Networks: A Paradigm for Understanding Chronic Illness”. Dr. Kogelnik and the OPI/MERIT initiative have big plans. 

Various researchers will present immunologic side of Lyme disease – testing and treatment.  (I wonder if they know of the research of Dr. Sonya Marshall-Gradisnik?)

There always seems to be such a great disconnect between the Lyme community and the ME/CFS world. For me this is very hard to understand, as they seem to overlap so much. In a remarkable post, Cort Johnson brings us information that Simarron is looking for tick-born illnesses in Dr. Peterson’s samples. I wonder why it has taken so long.  I have never heard Dr. Peterson mention anything of tick born illness. Maybe Lipkin is finding something in this regard?

I have always been surprised at not ever seeing Dr. Horowtiz at a ME/CFS conference. He should be center stage. I did see Dr. Burrascano at a WPI conference in Reno in the summer of 2010, brought there by the phenomenon of XMRV. Since then a few ME/CFS physicians make an appearance at the ILADS conference, fueled by the larger viral and immunological research of Dr. Judy Mikovits. Presenters at ILADS have included Dr. Joseph Brewer, Dr. Jose Montoya, Dr. Neil Nathan and Dr. Kenny De Meirleir. (A De Meirleir lecture on GcMAF, similar to the one presented at ILADS last year, can be found here. GcMAF in Lyme disease has not been seen since Dr. Klinghardt proclaimed it a wonder drug several years ago. )

It has always been a mystery to me that at ME/CFS conferences, no mention is made of Lyme. This even holds true for the Invest in ME conference. Maybe it is time for getting Lyme doctors to ME/CFS conferences. Maybe Dr. Horowitz should make a presentation at the Mount Sinai Conference?

Among the many attendees at ILADS will be Dr. Judy Mikovits, Dr. Chitra Bhakta, Dr. Eric Gordon, and Dr. Karen Vrchota.