Sunday, June 14, 2009

Dr. Kenny de Meirleir

Dr. Kenny de Meirleir is a Belgium CFS/ME doctor who practices vertical medicine. There is no one quite like him in the field. He has developed his own theory about gut dysbiosis being the essential issue with CFS/ME. Other CFS doctors as diverse as Dr. Paul Cheney, Dr. Ritchie Shoemaker and Dr. Dan Peterson have now adopted his ideas. Not too many people have noticed this. Through a special group, funded by an anonymous donor, these doctors and clinicians have regular meetings and exchange of ideas. Dr. De Meirleir is in close touch with Cheney.

Dr. De Meirleir states that the gut wall is abnormal in CFS. As a consequence good bacteria cannot stick to the intestinal wall. This abnormality determines what is in the gut. He suggests aggressive strategies to deal with the problem. It has to be tackled at a fundamental level. He believes that high viral titers have nothing to do with the disease. The gut goes down first. All these antivirals are useless until you take down the cause - and the cause is a neurotoxin that also shuts down the mitochondria.

Dr. De Meirleir believes that the Belgium Red Labs Fecal Microbial test is very precise in measuring pathogens - and it tells us how much bacteria, and which and where. The Red labs test is a fecal microbial test of all the major bacteria that are in the gut. And according to him, this teaches us a lot. Basically all patients shift toward anaerobic metabolism. Once the problem bacteria are identified he kills the pathogens without doing too much damage, and then he begins rebuilding the gut. This might have to be to done 2 or 3 or 4 times because the bad stuff can come back. Because the bowel is a very conservative organism, it doesn’t change very well, so it takes a while.

The bacterial pathogens that cause the most problem are streptococcus, enterococcus and prevotella.

Ampligen is only a treatment for one of the consequences of this disease; it is not treating the basic problem. He now has the evidence for this, and will publish it.

His idea is simple: you shut down the cause and then you start cleaning up. All these gut immune cells, 80% of the immune system, live for a year - so to change the gut it takes a year. In the meantime you keep shutting down H2S so that is does not go in a bad direction.

The idea is to map the problems and then make a decision as to the biggest impact. Detecting this will get better and better. Stanford has this test now where they can see all the active organisms. These in effect are all consequences; they are not causing the disease. The disease is caused by a neurotoxin because the intestinal bacteria have shifted and because they are exposed to heavy metals. In response you do two things: break down the bacteria so they don’t produce heavy metal in this vicious cycle and then you start chelating.

Dr. De Meirleir says that he is seeing 23 severely ill patients in Norway and that eight of them have gotten out of bed since March 2009. He did not want to present this information to a UK audience, preferring to present it to the people concerned in Norway. The conference in Norway is on June 12th.

Dr. De Meirleir will write a book about his treatment. There is 15% who have a brain virus and they will fall out of this gut dybiosis thing. With them the main problem is a neurological problem, although the blood brain barrier difficulties might be connected to the gut. The other 85% have a digestive problem. LPS is a very immunogenic subject. You learn that gut is full of holes. You have to go one step further. According to Dr. De Meirleir, this was the missing link.

Monday, June 1, 2009

London Conference May 29, 2009

I am the Patient Advocate for my thirty-five year old daughter. I travel to conferences to observe what is going on in the field. This is not a scientific report. It is a record of my impressions, as limited as they may be. They are presented to give some impression of this conference to those who were not able to attend, particularly patients and patient advocates. I apologize ahead of time for my own biases and editorializing. A DVD will be released of the conference in July and can be purchase for 12 pounds.

This was the third consecutive year that I have attended this conference. It takes place in a beautiful old building on the southeast corner of Green Park. In many ways I could just reprint my report from last year. One positive note was that there were more participants at the conference. Each year it has gotten larger, and this year it was sold out. The government ministers, who were supposed to attend, were “tied up” and couldn’t make it. The conference resolved to send them a DVD of the lectures, urging them to consider these research and treatment efforts for CFS/ME.

The attendees seemed to be mostly from the UK. Not very many Americans attend this conference. I don’t know why. Instead there were Norwegians, Danish, Swedes and Australians. There were a good number of patients and some in wheel chairs.

As with last year, American presenters dominated the conference. These included Garth Nicholson, Dan Peterson, Annette Whittemore, John Chia, and Judy Mikovits. The Belgium doctor/researcher Kenny de Meirleir gave a talk. Basant Puri and Jonathan Kerr gave fine lectures. There were a few British and Australian doctors in attendance. Many others were missing.

The subject of this year’s conference was severe ME - but many other subjects were introduced.

Professor Brostoff chaired the conference. I had never heard of him and, by the end of the day, I wished that it had stayed that way. I missed the balanced, coordinated discussion and summaries of last year’s leader, Malcolm Hooper.

Annette Whittemore gave the keynote speech. She spoke of the new Neuro-Immune Institute and the immediate goals. While the Institute building will not be finished until September 2010, the scientists, Mikovits and Vincent Lombardi, and are working feverishly. Annette Whittemore also gave details of the struggle with her daughter’s illness.

Annette Whittemore’s efforts are very noble and far-reaching. I don’t suppose the ME folks in the UK have ever seen anyone like her. She mentioned that Senator Harry Reid was the greatest supporter of CFS in the U.S. Congress, and that that Senator Reid has made great efforts to bring the Neuro-Immune Institute to Reno. Previous of this, I had never had a very positive picture of Senator Reid - but now that has changed.

Garth Nicholson gave a lecture on mycoplasma infections in immune compromised diseases, particularly Gulf War Syndrome. He spoke of the connections of CFS/ME in the families of these sick veterans. Dr. Nicholson of course was dragged into this research after his daughter got sick after the first Gulf War. Much of the information presented can be garnered from the internet and various studies that Dr. Nicholson has presented over the years. It was very good opening lecture and laid the groundwork for subsequent presentations and discussions.

A Norwegian MS doctor named Harald Nyland spoke of an outbreak of an epidemic of giardia in Bergen, Norway and its connection to CFS. Flashes of humor punctuated his talk.

The soft-spoken Jonathan Kerr gave an update on his search for subsets and markers for CFS. About five years ago Dr Kerr announced that it would be a year until a marker and two years for a treatment (or the other way around). At that time he was thinking of using existing drugs like Enteracept. That did not work out when he was denied funding. Many people speak very highly of Dr. Kerr’s work and of the strides that he has made. These days he announces no time line and soldiers along, making slow but steady progress. He is involved in important collaboration with the Whittemore-Peterson Neuro-Immune Institute.

Kenny de Meirleir gave a precise lecture on his experience with very severe ME patients in Norway. He unexpectedly began his talk with a very short film documenting a young Norwegian woman’s descent into a near death isolation. He also had the sister of another very severe ME patient tell briefly of her sister. This young woman has lived in the same house with her sister for four years without every seeing her. Her sister cannot tolerate any stimuli. It was a powerful moment.

Often the sickest patients, the housebound and bed bound, are forgotten - even at these conferences, where most participants can move about. The ones who need the most help are not represented - although there were a number of patient advocates in the audience. Through this film, Dr. de Meirleir brought the news home and, despite the shocking unpleasantness of the reality, I thank de Meirleir for this.

Dr. de Meirleir has visited, observed and tested 22 very severely ill CFS patients in Norway. (In the US, you can’t even get a doctor to bother to make a home visit.) Dr. de Meirleir does not fall into this category - and he is looking for answers. He believes the answer resides in the sickest of patients. As a result of his investigations in Norway Dr. de Meirleir has come up with a simple “marker” test for severe CFS. This is a self-administered home urine test that measures hydrogen sulfide. Protea Biopharma makes the test.

De Meirleir also presented his concepts of the connection of CFS/ME with a specific form of intestinal dysbiosis and presented his manner of testing and treating it. He does not have a particularly treatment for the very severe form of ME, which he characterized as “difficult”.

At the end of his talk, a variety of pettinesses broke out. I suppose there was some lingering irritation over his “press” conference of the day before. De Meirleir said that he has an independent group examining his protocol and its success rate. There were some expressed differences about the need for a control group. He said that he would do that.

Dan Peterson gave perhaps the best overview of current antiviral work done at his clinic. He presented the concept of translational medicine, a new paradigm for studying and treating illness. He covered a lot of ground and spoke of his use of Vistide. This guy is terrific.

Dr. John Chia gave another one of his fine presentations. Dr. Chia has identified a serious subset of CFS, which is identified by real markers – stains of enteroviruses in the stomach. (Of course as soon as a subset is identified and markers established, this no longer is CFS in the mind of the establishment and they use this to further substantiate that CFS does not exist.) Among other things his treatment is Oxymatrine, a Chinese medicinal compound. Oxymatrine brings some improvement in about half of the patients that he treats. His son Andrew, who works closely with him, accompanied Dr. Chia. Andrew is going to Pharmaceutical school with the specific intention on working on pharmacological treatments for enteroviruses. Dr. John Chia was dragged into the field of CFS research and treatment by the enteroviral illness of his son. Andrew is mostly recovered and also dedicated to the field. Dr. Chia is a precise diagnostician, who presents a very clear avenue for some people to explore and possibly get well. Surprisingly very few people are paying attention to this, although this conference has now presented him twice in two years - so they must have some sense of the peculiar diagnostics and success that he has reached with his approach to enteroviruses involvement.

Dr. Judy Mikovits, who astonished so many folks at this conference last year, was back for another lecture. She made her usual complex and far reaching talk, most of which passed over my head. (I should have studied biochemistry.) Her work at the Institute involves sub-setting CFS through gene array chips and cytokine testing. The Institute is moving very fast and I get a sense that specific information is going to emerge here sooner than later. Certainly talking to Annette Whittemore and hearing Mikovits and Peterson makes one sense something is afoot, although they are smart enough not to say anything. During the question period Dr. Mikovits was asked if they had been working on a specific virus involved in CFS. She answered: yes, and then she followed up that there is a novel virus that has never been associated with this disease and that they had submitted their research for publication. I could not hear the particular publication although I was listening hard.

This particular one-day UK conference has a distinctly different feeling that the longer and broader conferences that I have attended in the US. However the one-day format is particularly hard-hitting and intense. The lectures ranged from Basant Puri’s report on brain scans, which was quite detailed and scientific, to Norwegian Barbara Baumgarten’s very practical presentation of efforts to develop ME clinics at hospitals in Norway. Needless to say these are quite different areas of consideration, and it becomes almost incomprehensible to the listener trying to combine these various threads.

However, certain continuity was given by the lectures of de Meirleir, Kerr, Mikovits, Peterson, Nicholson, and Chia, which are tied together by several threads. These include the search for diagnostic markers, the treatment of gut dysbiosis through diet and probiotics, and the search for complicating pathogens, and their treatment.

Once again I got the sense that the UK has there own specific and serious problems in regards to this complex disease. Many of the participants expressed dismay that the ideas and treatments presented to this conference are unavailable to them under the NHS. (Some of the attendees seemed to be hearing this information in these lectures for the first time.) For instance the NHS will not pay for extensive thyroid testing, or for Acumens’ mitochondrial tests or any specialized experimental tests for this disease. Much like the CDC, the government in the UK does not believe that this disease exists or, if they do, they have no idea what it is, and they don’t seem to want to know. Private doctors like Myhill are available, but the populace is not conditioned to seek out such treatment, which is not reimbursed by the national insurance. The questions from the audience indicate that many patients in the UK live in a bubble, as if the internet does not exist. So much for the managed health system of the UK.

A final question of the day came from a man who asked the panel of speakers for their assessment of when a marker and further treatments would be available. The questioner expressed his feeling that the speakers had been upbeat, but that he, the questioner, felt that he was lacking specifics about diagnostics and treatment. Somehow he seemed disappointed at the day’s events. A few of the speakers gave vague answers - but no one would give the questioner what he wanted. There was a long silence. Dr. Chia indicated that the question was a bit more complicated; he said that diagnostics for various subtypes were present now and that the problem was getting these accepted. For instance the process that he uses, staining, is not new, nor is it experimental. However, he has difficultly getting anyone to pay attention to or care about his results. Meanwhile he goes forward searching for treatments, and lobbying Pharmaceuticals for drug development for enteroviruses. This fellow’s question ended this conference on a bit of a down note. It was a shame, as it was a day of fascinating talks.


Cheney lecture April 2009

(This report includes corrections by Judy Roget. I appreciate these corrections.)

I attended the lecture of Dr. Paul Cheney in Fairfax, VA on April 25, 2009. Dr. Cheney gave one of his astonishing three-hour lectures to a group of about 100 listeners. I have heard Dr. Cheney talk in person on several occasions and have also looked at two three-hour lectures of his on DVD. I was looking forward to hearing his latest talk and I was not disappointed.

I am a non-scientist, who surveys the field of CFS. I go to lectures and conferences and listen and try to get a feeling for what is happening. I am biased toward Dr. Cheney and any other physician/researcher who devotes themselves to this peculiar disorder.

Dr. Cheney gave a non-top three-hour lecture. He presents using power point but, unlike others who just mindlessly read information off the screen, Cheney talks mostly extemporaneously, with a clear direction and command. He has a lot of ground he wants to cover and knows how to traverse it. He takes one five- minute break. At the end he answers questions for twenty minutes or longer. He was clearly tired at the end.

For his lecture and ideas on diastolic dysfunction research and earlier treatment plans one can consult online information and previously released DVDs of his lectures. Dr. Cheney does not shy away from presenting his views. Information on this April 25th lecture will be published on two new Internet sites of Dr. Cheney –, and You can leave you name at these websites and be notified when the sites are activated. A DVD is also being made of this lecture - so interested parties can investigate it themselves.

Recent information is available online on his ideas about Oxygen Toxicity and Treatment with cell-signaling factors. These can be found online under “Oxygen Toxicity as a Locus of Control for CFS” and “Cell Associated Therapy for Chronic Fatigue Syndrome: Is this the Next Frontier?”

I include a few notes from the lecture, items that struck me. I share them in hopes they might help others to focus on certain aspects of this disease to their benefit - as I have from the many contributions of others. In general, I look to independent physicians and researchers as the best hope to provide answers. Dr. Cheney is one of the best.

The crux of this lecture was about Cheney’s ideas on Oxygen Toxicity and then on his current treatment plan. The talk presented a great deal of technical research information, with displays of IVRT and ECHO graphs and studies, which Cheney has applied to his patients.

Dr. Cheney initiated the talk by stating his concept of “CFS as a compensatory mechanism to contain the redox problem (at the heart of it)”, and that fatigue is a mechanism for keeping worse things from happening.” This theme reappears throughout the talk.

The talk was filled with familiar information about diastolic dysfunction. He feels that almost all CFS patients have diastolic dysfunction. “100 % of CFS patents have an energy related cardiac problem.” One of the primary symptoms of diastolic dysfunction is Orthostatic Intolerance (a problem with standing). He feels that CFS is a severe oxidative stress disorder, resulting from some provocation, or insult – viral or bacterial. He thinks that antiviral therapy is only effective in the beginning of the disease. He spent some time talking about the four phases of the disease.

CFS patients cannot get oxygen into their tissues. If you administer oxygen to the patient, they get worse. Cheney believes that “oxygen is kept out as a compensation for keeping something worse from happening and the system accepts the consequences as compensation for not getting something worse”. With his testing method, Cheney detects “a 21% loss in energy in 30 seconds” when oxygen is administered to patients. He says that the CFS condition is close to a fetal physiology in two ways - 40% have PFO (an opening in the heart), and all have oxygen toxicity.

Treatment of oxygen toxicity is in control of the outcome of this disease. Treat the oxygen toxicity correctly and the oxygen toxicity goes away – and the patient gets better.

CFS patients have a defect in oxygen handling systems. This includes damage to red blood cells. (Red blood cells are not damaged, rather the way oxygen is carried by the red blood cells is altered.) The body compensates by keeping oxygen out and the result is low energy. Cheney discussed the four adaptations to low oxygen - and most CFS patients have all four. One of them is the methylation block –“another important defense mechanism against oxygen toxicity”. The push crash phenomenon is basically is a failure of the HPA axis to control oxygen toxicity.

NAPDH is low, anabolically blocked which results in P450 becoming uncoupled, leading to all sorts of problems.


Dr. Cheney feels that the best treatment follows the best understanding of “leverage”. He calls this the “control point”, and he believes in CFS this control point is oxygen toxicity. He describes himself as having “gone beyond” just treating the symptoms, or searching for the etiology or for specific viral culprits. He is interested in finding and attacking the “control point”, and getting patients back to a more functional state. Everything that he knows points to CFS as an oxygen toxic state. He asks himself: what is it that makes the oxygen toxicity go away?

At this point Cheney spoke at length about two sticking points: mitochondria and P450, in relation to oxygen toxicity.

Treatment 1.

To correct things, Cheney uses cell-signaling factors (CSF), which are similar to “live cell” therapy as practiced in Europe for many years. This is not a new idea. For years Cheney has used a LMW peptide called Kutapressin. In recent years he has added other Cell-Signaling Factors (adrenal, thymus, heart, kidney, and bran). Cheney makes his own, presumably a gel. The one for the heart is from bison. (Dr Cheney no longer uses Kutapressin. He currently uses five cell signaling factors to treat his patients: bison heart, bison liver, bison kidney, bison pancreas and porcine brain. Adrenal and thymus and porcine liver (pigs are scavengers and their P450 systems cause an adverse response in most CFS patients) are only used for testing purposes. Dr Cheney currently manufactures the treatment cell signaling factors mixed in a base of golden jojoba oil for transdermal application to the inner arm from wrist to armpit.) Cheney explained how he felt that CSF worked in CFS and he demonstrated this with a study that he has done. This study was performed to investigate function, not symptom improvement. It was in two parts and the second part, using CSF, had a significant uptick in patient functionality. Improvement occurred within ninety days. 75% of the patients functionally improved and their oxygen toxicity improved. Non-responders oxygen toxicity did not improve. Improvement in responders was sustained.

He ran through a set of permutations of the various CSFs, measuring for energy responsiveness on “Echo terrain maps”. He finds that the adrenal and thymus and liver create the most “backflash”, i.e. loss of energy, and that the pancreas, brain and heart CSFs bring the most energy response. (Porcine liver produces the adverse response whereas bison liver produces improved response.) He has created hundred and hundreds of ECHO terrain maps to determine energy response to the use of these agents. He sees the same thing without exception. 100% of patients display oxygen toxicity, all of the patients’ energy response drops with adrenal and thymus. All patients’ energy response goes up on heart (most responsive) and brain and bison liver CSF. Cheney says this is nothing more than a series of interrogations and out of it you can create a map.

Cheney uses an ECHO “terrain map” to develop therapeutics.

Healthy controls do not respond to CSFs.

Also he is expanding his energy ECHO testing to various pharmaceuticals and supplements to see if they are helpful or hurtful.

According to Cheney, citing evidence from his Echo terrain maps, Methyl B12 and Folapro “is toxic to CFS patients”. The methylation block, which he believes exists, is helping to prevent oxidative stress

Magnesium always benefits these patients.

Almost every case of CFS is toxic to fructose, almost universally responsive to glucose.

“Glutathione in this disease is not a good idea in most instances.”

“T3 is the worst hormone that you can give to a CFS patient.”

“Vitamin d3 is toxic to this disease.”

Cheney attacks the “Oxygen toxicity” with CSFs.

Treatment 2

Cheney characterizes people as part human and part something else – this something else being gut bacterium. “It links human illness to gut problems.” “You can’t have an illness without a gut problem.”

Cheney has a program for gut dysbiosis and dysfunction that is similar to the one of Dr. deMeirleir. This is the first time that I have heard Cheney talk about this with such emphasis. Cheney stated that none of the other therapies work if this one is not included.

Cheney attacks the gut dysbiosis with gut modification.

Treatment 3

Cheney treats his patients with Artesunate

At normal human Redox environment, we are at our highest energy set point. At this normal redox set point, no virus cannot replicate. Viral replication is a function of redox.

Artesunate is a powerful redox inhibitor. It shifts redox state to normal. (It shifts the redox state of CFS patients to normal using a pulsed protocol.)
Artesunate is a great antiviral and redox shifter. Artesunate is one of the most powerful antivirals known, active against all herpes viruses.

Artesunate has great tolerance and safety and is a central feature of his treatment today.

Cheney attacks the redox state with Artesunate.

Cheney says, with this treatment, he has doubled the amount of cures, and that 75% of patients show improvement with this treatment modality:

Treatment 4.

Cheney gets a high percentage of responders from patients who are under 40 years of age. For non-responders, mostly over 40, he has been using stem cell infusions. The first three part of the treatment bring results in 90 days. The stem cell treatment takes six months to evaluate the effect. Cheney says that these stem cell treatments obliterate the oxygen toxicity, and that patients “has been transformed with stem cells infusions”.

Cheney treatment (This should read "Cheney treatments include" as there is more to the current protocol.)

1. Artesunate
2. Cell signaling factors
3. Gut dysbiosis – probiotics, digestive enzymes, diet
4. Stem cell infusion

Question period

-Cheney was asked what medicines he likes. He mentions Klonopin, then low dose Doxepin. He does not think much of Neurontin.

About Rich van Konynenberg, Cheney said this. He admires Rich and has had many lively discussions with him. He admires anyone who is attempting to organize a testable theory of this disease. Cheney agrees with some ideas of Rich’s. There is certainly evidence of a methylation blockage in CFS. Cheney believes that it is designed to help the CFS patient, and it is not the problem. Trying to unblock it with methyl b12 and Folapro makes the situation worse. In terms of glutathione Cheney thinks Rich is right in that there is lower reduced glutathione, but not total glutathione. Trying to supplement glutathione directly leads to increased oxidized glutathione. Taking glutathione in large doses is not the way to go. Cheney thinks that Rich is right in some ways, but is wrong in his conclusions.

-Essential Fatty Acids – he uses them as a “good health move”, but is somewhat suspicious that they too might worsen “oxygen toxicity”.

-His general message was to be careful what you take. If something is not bringing obvious benefit, it very well might be complicating the situation.

-Supplementing with glutathione is unproductive and only raises oxidized glutathione.

-CFS is a problem of energy - and d-Ribose won’t help. It just makes the problem worse. He says the same thing about co-Q-10.

-About stems cell therapy, he mentioned Dr. Neil Riordan and his stem cell work in Autism, and remarked in Autism’s close relation to CFS.

-These stem cell treatments are done at clinics in Costa Rica and Panama. Cheney said that the clinics were located in these countries not because the process is illegal (which it isn’t) but because of costs.

-Cheney feels that almost all patients have environmental illness to some degree. He thinks environmental illness overlaps with CFS but that it definitely is a separate entity.

Reno Conference March 2009

I attended the CFS/ME conference in Reno Nevada from March 12-15. I am a patient advocate for my 35-year old daughter who is housebound with CFS. The conference took place at the Peppermill Hotel and Casino. Upon arrival, this location seemed a most improbable place to have a CFS/ME conference. This choice is a highly stimulating environment, with flashing lights, chemical smells, perfume, noise, lousy and expensive food, and a smoky environment. The location was chosen because Reno is the home of the new Whittemore Peterson Neuro-Immune Institute, which is currently under construction at the nearby Reno branch of the University of Nevada. This research and treatment center is scheduled for completion in several years.

Like with all academic conferences, there are contending forces at work. The conference organizers do their best to be inclusive of this vast umbrella of CFS/ME. Consequently the presentations run from the most abstract to the very mundane. This is a four-day extravaganza. Because of its length and breadth, the end effect is somewhat confusing and unsatisfactory in terms of getting any sense of cohesion to what is going on in this field. However one can pick their way through the talks and presentations and come away with some sense of progress and direction.

I am a patient advocate. I am neither a doctor nor a scientist. I come to this conference seeking practical information regarding treatment modalities. I find many of the research talks fascinating, but I am more interested in the here and now. My knowledge of biochemistry is limited, despite having listened to hundreds of talks.

I attended the conference in Ft. Lauderdale in 2007. The 2007 conference had a much greater sense of superficial excitement than the Reno conference. This was due to the impending Valcyte trials. Dr. Montoya, a virtual unknown at the time, was welcomed as a hero. Dr. Montoya was not at the Reno conference, and no further presentation of the trials results have been made public.

The conference started with a one-day Patient’s conference, and the talks were general in nature. The auditorium was full with close to 300 participants. Dan Peterson and Anthony Komaroff gave excellent introductory talks, followed by fine talks by Dr. Jason, who is always super focused, by Nancy Klimas on treatments. There were questions for all of the speakers at the end. Very little was new here and most of the information presented can be found on the internet. The big news of course is the Whittemore-Peterson Neuro-Immune Institute.

The format from the last conference was changed in that questions were not at an open mike. Instead there were written questions, selected at the dais. While this might have proven itself to be more “efficient”, it lost the “dynamic” of the questions portion of the program. This written question procedures went on for the entire conference (with one notable exception). Hence the presence of Dr. Park, Dr. Shoemaker, Dr David Johnson, Rich van Konynenberg and many others was missing - in that the authors of the written questions were not identified, nor could the spectator judge the questioner through appearance and voice. I found the open question sections incredibly valuable in the Ft. Lauderdale conference and also at various other conferences to which I have been. I was surprised at this new format, as Klimas usually encourages the give and take. The one exception to the written questions was on the third day when there was an open discussion of several case studies. It was during this time that van Konynenburg, Park and others were able to voice their opinions. I would very much have liked to see more of this.

A fine lunch and dinner were provided for the patients by Sierra Internal Medicine, Peterson’s organization. Dr. Peterson was introduced - and then enthusiastically welcomed for his tremendous efforts in this field. Speaking to an appreciative audience, many of whom must have been his patients, Dr. Peterson was visibility moved, shaken really, as he thanked the patients for the inspiration that they provided him. It was a very moving and heartfelt moment, and put aside any question of the value of coming to this conference.

The next three days were the Research part of the conference. Many of the familiar CFS doctors and researchers were present: Kenny de Meirleir, Natelson, Klimas, Dan Peterson, van Konynenburg, Shoemaker, Kerr, Raymond Perrin, Trevor Marshall, Dr. John Chia and his son, Cheney, Mikovits, and Jason. Surprisingly, many physicians and researchers were absent: Holtorf, Byron Hyde, Jacob Teitelbaum, Dale Guyer, Susan Levine, Derek Enlander, Ablashi, Montoya, Vrchota, Lerner, and Viniski. There were a few doctors from UK and Europe, and a number from Japan.

For me the highlights of the first research day (Friday) were the presentation of a small but positive trial of Isoprinosine (showing patient improvement in various parameters) an exquisite talk by Alan R. Light on receptor expression on Leukocytes increases after moderate exercise (with potential biomarker possibilities), and a small trial on Xyrem (taken for alpha wave intrusion). 95% of patients showed improvements, with no difference in immune markers. Next was the soft-spoken Jonathan Kerr, who holds a key for long-term solutions, and whose presentations are riveting.

The second research conference day, Saturday, was the longest and included the most presentations. Saturday started with the open discussion on “difficult patients’. This was quite interesting, but it could have been much longer. Mikovits, the director of the Whittemore-Peterson gave a slam-bang talk, one similar to what she delivered in the UK last May. However, this time she had less time and she really had to whirl through it. This gal is generally accepted as being a serious researcher and in a position to get some results. She is obviously bringing money and people over from her former research field in cancer. Gordon Broderick, allied with Klimas, gave a super lecture on his new paradigm or motif for gathering and collating information, which presents a much more dynamic model. Vincent Lombardi, also with the Whittemore-Peterson Institute, concluded that cytokine and chemokine signatures in subgroups of ME/CFS could be used diagnostically, as serum biomarkers to striate patients for appropriate anti-inflammatory, antimicrobial and antiviral therapeutics. Klimas followed this with her talk on cytokine defects in CFS/ME. I was pleased to see Norman Booth give his study results on mitochondria dysfunction and the mitochondrial tests that are being done at Acumen in the UK, Acumen is run by John McClaren Howard. Also Shoemaker gave a great talk, but he seems to get lost in the shuffle. I actually was surprised that he was invited to give a talk.

The third day featured research in genomics. This session presented, through Kerr (and two of his very young lab scientists, who both made excellent presentations) and Mitovics, an impressive coherence. At the same time there seemed to be a sense that not everyone was on the same page and that there were many loose ends. There was an agreement that much work needs to be done before biomarkers might be realized or treatment modalities attempted.

At the end the Japanese scientists presented their “model for an integrative approach” including ideas about anti-fatigue foods.

Poster papers are presented in an adjacent room to the lecture hall. Poster papers are visual presentations on bulletin boards and available for viewing throughout the three day Research conference. They are pre-selected by someone, through an application process. I estimate that there were about 30 poster paper presentations. These included work and ideas of Dr. John Chia on Oxymatrin, and Rich van Konynenburg’s positive results on his Methylation pathway blockage concept. Additionally Ritchie Shoemaker, Trevor Howard, Raymond Perrin, Amy Proal and Ashok Gupta presented their ideas. The presenters of the posters were available during the breaks for conversation - and there was a great deal of interaction that took place in this room.

A DVD of the complete conference is available and will be released in two weeks.


UK conference May 2008

I am a patient advocate for my 34-year-old daughter. I attend CFS conferences and try to learn about this disease. I am not a scientist. Consequently, much of what I hear, I do not understand. However, after a number of years now, I do have a feel and a respect for the complexities of this disease. For those interested, here are my observations of the one-day ME/CFS conference in London May 19, 2008. Having written these notes for my own use, I have no further comment to make on them. More knowledgeable and useful reports will hopefully appear, and there will be a DVD of the presentations at this conference

The conference was chaired by Dr. Malcolm Hooper, a revered UK ME/CFS doctor.

The conference began with a very excellent hour-long lecture by Dr. Leonard Jason from DePaul University in Chicago. He is a psychologist who studies CFS statistics, demographics and terminology. He spoke at the International conference in Ft. Lauderdale and gave the same lecture addressing the importance of precisely defining the CFS population. He also elaborated the various shortcomings of not having done this yet. He spoke of the various weaknesses of the 1994 Fukada definition (a committee decision) - and of the 2005 Canadian definition, which is slightly better. His lecture was both fascinating and depressing, as there are great pressures from different directions to either expand the definition or contract it. As usual in such matters, the bottom line is money.

Dr. Jason makes huge efforts to sort out the patient population. Part of this involves developing apt questions to tease out a meaningful response. For instance a particular question or set of questions will try to measure “the severity of self-reproach” in various overlapping patient populations. If you ask a patient with depression, “If you were well tomorrow, what would you do?” you will not get much of an answer. If you ask this of a CFS patient, you immediately get a long list of things that they would do. The response in the room indicated that most attendees understood exactly what he was saying.

As an example Dr. Jason spoke of the recent CDC definition, which instantaneously expands the former estimated CFS patient population of 400,000 to 4 million. It is a nice trick and many people are happy with this - as it supposedly makes the disease more prevalent and real; and this will supposedly draw more researcher money. Dr. Jason aptly pointed out the flip side of this where under the new definition a “CFS patient” need not have “post-exertional fatigue” or “fatigue of six months duration” and other hallmarks of the disease. The reality is that these new parameters host a great number of patients suffering from other disease states, including depression. After hearing Dr. Jason speak, one would have to worry about the CDC. All this is a little desultory and depressing, as Dr. Jason soldiers on with very impressive arguments to define CFS more accurately and tightly, which will eventually lead to more identifiable subtypes, the subject of this conference.

Next up Jonathan Kerr gave his usual fine low-key and precise lecture. He is usually allotted a half-hour, which I suppose is all that he needs to elaborate his work. He presented his gene expression work in his soft-spoken voice, and there was nothing new here. He and his group have identified seven subtypes, each which has a potential treatment with existing drugs. They are working on a marker (or markers) in order to identify subtypes. No timeline for a marker, or markers, was given. Presumably and eventually, trials with specific existing drugs with subtypes could be done. Kerr did reveal that his application for a trial of Enteracept on a subgroup was turned down by the government, and that this trial is not going to happen. The most poignant moment came at the end of his lecture where he put up a picture of his “group”, the same photo he has shown in the past - six researchers. This group has now dwindled to three - as his funding has been cut, and he gets no funding from the UK government health ministries. Fortunately he is working in collaboration with a group of Americans, who have a deeper appreciation of his work.

Dr. Martin Lerner made a longer presentation on his work sponsored by the A. Martin Lerner Foundation. This was the first time, I believe, that Dr. Lerner has spoken in the UK; and there was the sense that few members of the audience had a clear idea who he was or what he does. Dr. Lerner presented a lecture similar to the one that can be seen on the Internet, with the significant addition of recent long-term data. Dr. Lerner is probably the most experienced doctor in using anti-virals for subsets of CFS in the world. Highlights of the lecture are expressed here. Dr. Lerner has compiled six years of data of 180 patients, including 5000 visits and 45,000 pieces of information.

Dr Lerner has separated the 180 patients into two groups with similar demographics: Group A (138 patients) - CFS Herpes virus illness (EBV, HCMV, and HHV6, in some combination) with no coinfections, and Group B, CFS Herpes virus illness (EBV, HCMV, HHV6 in some combination), with co-infections (Lyme, Babesia, etc). He presented information only on group A. Lerner uses the Fukada definition. Patients in Group A were identified through positive IgM recombinant p18 monoclonal VCA, abnormal Holter monitor assessment and abnormal cardiac wall assessment. More specific details of this screening are publicly available. Specific long-term pharmacokinetic therapy, (Valacyclovir, Valgancyclovir) was administered to each patient. Using his own Energy Index (EI) point score (1-10), Lerner determined the mean score for 138 patients at baseline was 4.5. The mean final EI point score was 6.0. These data indicate that specific long-term pharmacokinetic administration of Valacyclovir/Valgancyclovir provides long-term significant benefit to Group A patients. There was no toxicity to this long-term antiviral therapy. In answer to a question, Dr. Lerner indicated that there were remarkable improvements to heart irregularities.

Dr. Lerner strongly believes that viral subset CFS treatment options exist right now, today. His foundation is working on a DVD training film for physicians. While Dr. Lerner holds various patents on his treatment protocols, with several more pending, he gives every indication of being a dedicated practitioner and researcher who wants to get his information on antiviral treatment to a wider audience.

Dr Chia followed, as he presented his ideas on the causal relationship of enteroviruses and CFS, including his treatment with alpa-interferon and ribavin. This man is a very serious doctor and with his son has made great steps towards identifying a CFS subset. As with Dr. Lerner, it seemed that few in the UK knew of Dr. Chia and his research. Information on his investigations is available on the Internet.

The last major lecture was an incredibly high-powered presentation by the American researcher, Dr. Judy Mikovits. She is the research director of the new Whittemore Peterson Instituteof Neuro-Immune disease in Reno, NV. In a lecture of which I understood next to nothing, she gave every indication that this institute has the funding, the drive and the independence to reveal some important elements of this disease. She also indicated a no-nonsense willingness to cooperate with others world-side in this struggle. I have seen many scientists make presentations, and this gal was amazing. With this presentation, along with the others, there was a clear picture that the Americans were back in the UK doing what they do best.

Additional lectures were given by Dr. Julia Newton, who gave a very clear and useful talk on Autonomic Dysfunction, a distinct subgroup in CFS, by Dr. Irving Spurr, a UK doc with great practical experience, who presented his ideas for treatment of CFS, and by Dr. Jean Munro, who gave case histories of CFS treatment by her group in the UK.

The final set of questions to the entire panel (including the addition of Dr. Tae Park from S. Korea, who had a poster paper on his IVIG treatment), gave some coherence to the topic of the day. At times, it was difficult to believe that these different speakers - with their diverse angles and experiences working with ME/CFS - were actually talking about the same disease. A nice bit of drama was added when Dr. Spurr stated that there was no evidence that anti-virals were effective. At this moment, Dr. Lerner looked a little dispirited. However, Dr. Lerner quickly recovered and reemphasized the positive results of his work; and various others joined him in expressing the belief that there are treatments available at present for distinctive subsets, and that more treatments with existing drugs will come online as subsets are identified.

Additional thoughts:

The important point of this conference to me is that it seems to indicate a turning point in thinking about this disease or set of diseases. People get together in this conference room and hallways and share ideas, and you can sense things are happening. The days are past of just dosing a drug on an experimental basis and seeing what it will do.

Several things are happening at the same time. The mechanisms of certain subsets of CFS are being better understood, an awareness of the necessity of tighter definitions of CFS is being expressed, and the diagnostic tools are becoming better.

In watching Dr. Lerner operate, it is difficult to determine whether he is primarily a practicing physician or a researcher. He seems to be both, and he has the curious habit of not tooting his own horn, at least not in public. Dr. Lerner is a quite fantastic fellow. He indicated that people at the A. Martin Lerner Foundation (privately funded) had diligently assembled this data based on retrospective and current information of 180 of his own patients. I think Dr. Lerner assembled this data to convince others of what he already knows: with the correct diagnostic workup, judiciously and professional administered long-term anti-virals make many people (in this subset) feel a whole lot better.

A few other thoughts: Dr. Lerner spoke of the importance of not exercising until reaching stage 8 on his EI.

Dr. Lerner’s diagnostic slides of EBV in the heart muscle are a little scary, but he had presented this before.

I asked Dr. Lerner about the EBV IgG antibodies as a diagnostic tool and he said that they were “totally useless”. He uses a particular type of IgM antibody test that is commercially available. Also he uses a Holter monitor test for diagnostic purposes. T-wave patterns appear flattened in a meaningful way with CFS patients. There is a third element of his diagnostic scheme involving another heart test. All of this is available by searching the internet for his patents.

Dr. Lerner had another good piece of advice. “Increase what you do when it is easy.”