Sunday, May 30, 2010


I first heard about GcMAF in the fall of 2009 and began asking about it. Not too many people either knew about it or wanted to talk about it. I read about it on various sites, primarily here and in this Bill Sardi article here.
I wrote a question on Prohealth board. Harmod's responses are of interest:

Most people in CFS/ME have not heard of this compound. A couple of CFS doctors, one is the US and one in Europe, are using this compound in a very small group of patients. One of them recently reported a strong positive response in one XMRV positive patient and improvement in an additional nine or ten patients who have just started on it. The compound is considered to be relatively safe. The best formulation is said to come from Israel, presumably this company. A less expensive formulation is produced in Europe and is undergoing small experimental trials.

There is a good overview of this compound and its activity at /

I wonder if this compound would have any activity against XMRV? Judy Mikovits was unaware of the existence of GcMAF until last week. Perhaps she can ask around about it?

Saturday, May 29, 2010

The Flashpoint

The past few weeks were a watershed in the convergence of very positive events in the search for validity in CFS/ME research and treatment. These events include the recent Invest in ME conference in London, the groundbreaking and thrilling published study of Dr. A. Martin Lerner and the recent XMRV tour of various European cities of the CFS/ME lions, de Meirleir and Peterson. These are heady times.

With the announcement on October 9, 2009 the world of CFS/ME changed. Suddenly there was a substantial piece of research with far- reaching implications. It was immediately obvious that this study was going to cause consternation. The discovery had the capacity to short circuit a dysfunctional system and shake things up. It was equally obvious that a door was opened. Whether it would stay open or be opened further or slammed shut was not clear; and it is still not clear. However the opportunity to move forward in CFS/ME research is there, and many people in the CFS/ME world sense it. Some are hopelessly optimistic, other are more restrained. Still others, the real losers, want to wait and see. What are they waiting for?

There is a discernible momentum and various people are tuned into it. A more accurate XMRV test will be coming out in a few weeks. This will unleash a host of doctors who are waiting to test their patients. This will be the ultimate “large-scale” trial. This antibody test has the possibility to show a significant percentage of positive results in CFS/ME - as well as in other diseases. The deficiencies of this test will be augmented by other forms of testing – stomach biopsies, saliva tests - to find additional reservoirs where the virus hides.

De Meirleir, Peterson, Cheney, Montoya, Brewer and perhaps others are acting as if there is going to be a “next stage”. That next stage will involve “immune tracking” (as yet undefined, but the subject of great attention by a few) and treatment possibilities. At this point we do not know what the treatments will be, but we can guess: AZT, Raltegravir, Apricitabine, tenofovir, peptide T, GcMAF, and Ampligen are all mentioned, as well as various immune modulators, particularly a stage-three trial drug being developed in Canada. Treatment protocols will take time, but this will start very shortly (if they have not started already). You can bet the farm on that.

In the short run, treatment will be the best chance to determine causality. In this manner we will find out the part that XMRV plays.

It is remarkable what has happened recently amongst CFS/ME practitioners. Dr. Lerner has released his incredible study results on antiviral treatments. This is a long tracking of all of his patients over the past ten years. His treatment results are very positive. What a sublime effort; this man is a real hero – and modest too. It seems likely that he will test his patients for XMRV and incorporate those results eventually into his treatment protocol. Perhaps, as promised two years ago, he will make a treatment DVD for other doctors.

It is a known fact that Dr. Lerner consults or interacts with Dr. Montoya about treatment protocols. This has been happening for some time. Dr. Montoya ran into a seeming dead-end regarding his Valcyte trial but he has not lost interest. Montoya has modulated his dosage regimens with Valcyte and added other drugs. Presumably these two are pooling information. Dr. Montoya will soon be using this new XMRV test. Dr. Montoya consults with Dr. Brewer, who has expertise in both CFS and AIDS. Brewer is practiced in giving antiretroviral drug regimens to AIDS patients. Montoya has colleagues at Stanford who can give him help with retrovirals. Dr. Montoya also consults with Dr. Enlander who also talks with Dr. de Meirleir. We know that de Meirleir consults with Cheney on a regular basis, perhaps every day. Cheney is seen talking to people at the WPI on a webcast and in London.

Dr. Cheney has developed over the years his own exquisite protocol. While Cheney eschews antivirals, he has his own equivalent involving Artusenate and cell signaling factors. He claims now to be able to blunt diastolic dysfunction in many patients. Perhaps de Meirleir will start using Artusenate? I think so. Cheney also uses cell signaling factors and is working on an even more potentially effective one involving human afterbirth material. This material might short-circuit the need for stem cell infusions. This man’s curious mind is always on the go, reading, thinking, problem solving. The big question with Cheney is whether his ideas can be extended to others.

De Meirleir and Peterson are traveling through Europe this month doing conferences on XMRV. They travel to Spain and Norway. Peterson has a continuing strong relation with WPI since retiring from the WPI directorship. Where Dr. Chia fits into this picture, I do not know. More efforts must be made to bring Dr. Chia into these discussions. He has such good ideas and so much fine data. Perhaps when the new test comes out, he will find a connection. I mention Dr. Chia to every CFS/ME person that I talk to.

There is a thread here. There is huge interaction among a certain cadre of researchers and doctors. This has never happened before with this disease.

While things have been building for years (Lerner’s study covers ten or more years, Chia’s work covers a long time, and the same with the others.) the XMRV study tripped a switch. What exactly it will lead to we do not know. However, despite individual differences, a consensus is forming.

As things move forward differences of points of view are to be expected. After all there is a great deal of unknowns about this virus and its attachment, if any, with disease. If we were able to overhear Dr. Brewer we might discern that he believes this XMRV is the cause of CFS/ME. If we were a fly on the wall in Peterson’s office he might say that the percentages of XMRV expressed today are too high. Klimas might urge patience and wait for more information. Who is going to supply this? It is entirely possible to see de Meirleir, with his slight smile, say, “XMRV is not the only thing here”. What might that mean? Far from being a rejection of XMRV, it anticipates further discoveries. This reinforces Judy Mikovits’ statement that there might be an XMRV-2. So hold onto your hats, this is going to be interesting.

What is not interesting is the attempt by some, for unknown reasons, to take out the flashpoint of this new science and XMRV. The first effort on the part of nay-sayers is to try to dry up the funding of the WPI. Instead of a great deal of cash flowing to this institute to speed up research, hire new lab assistants, help meet an operating budget need of a couple of million dollars, none of this has happened. The attempt to blunt the cash flow to XMRV-related matters and CFS/ME has been successful and no great additional funding has come their way.

Hence Dr. Bell’s plea for patients’ grassroots contributions to the WPI. This was a desperate plea, appealing to the very sick who can barely take care of themselves, who can’t work, can’t move, are often abandoned and live on their own limited resources. These are the folks who are going to save the WPI? But Dr. Bell sees the writing on the wall, he sees the success of cutting off CFS/ME research funding. It is a time-proven tactic on the part of the scientific establishment. Check out how Denise Faustman is frozen out in diabetes research and her funding seriously restricted - while her ideas are “appropriated’ by others. This is always a neat trick. Read about how Judah Folkman was denied funding for many years with his angiogenesis work. There are many such stories. So Dr. Bell’s concerns are well placed and take on a heightened meaning in the current situation.

Like it or not, the WPI is our flashpoint, it is the flashpoint of CFS/ME research in the future. If they are degraded, if they are defeated, we all lose. It is as simple as that.

It is important to remember that this WP Institute is a very small entity. It has one science director/researcher, one researcher and one lab assistant. At the moment it has a makeshift lab. The science director is on the road most of the time advocating for and defending her research. In addition there is a medical director, at the moment an unfilled position, and a Director of the Institute itself. The word institute implies perhaps a large edifice, something with great resources, unlimited resources, vast amounts of people. The truth is that in is a very small organization of a few dedicated researchers and a limited budget. (The small college that I taught at has seven or eight full time biologists or microbiologists, not to mention many chemists and other scientific minds, and a healthy amount of outside funding, generally wasted on insignificant academic projects.) It is astonishing how small this WPI really is – and how vulnerable.

In this battle there are no rules. The idealist utopian idea that science is pure is bullshit. This is not a clean and measured fight. Science is a competitive and dirty business, with very large stakes. People, even friends or compatriots, steal each others ideas at the first opportunity. Egos are very large and impossible to control. Those who believe the cream will naturally rise to the top in science are wrong. Those who believe the state or federal government will recognize the validity of certain research and support it are wrong. Those who think “friendly” or allied organizations will come to the rescue and be supportive are wrong. Pure science has to move forward in a force field of stiff resistance. The pressures against research in CFS/ME, for varied and unknown reasons, are immense. The WPI has gotten where it is with private funding and that will have to continue.

The disease of CFS/ME has two very serious problems - beyond the obvious. The first is that CFS/ME patients are so ill that they cannot move - or focus. Thus they cannot organize or lobby for themselves (as AIDS patients). The second is what I call the “Disbelief Factor”. No one believes this disease. No one believes it. It is beyond understanding. Often the patients themselves do not believe it - with its manifold symptoms and episodic debilitating nature. Hence they often get worse, because they cannot believe they have what they have. Family members, even close family members, don’t believe it. Friends don’t believe it. Doctors don’t believe it. Even those who are around it all the time, like myself, have trouble coming to terms with the reality. As a disease, it is hard to believe. At the 2009 Reno conference a male patient said to me, “CFS is not the worst disease, but it is the cruelest.”

The answer has to come through science. But the science has to be able to play itself out, the money has to be forthcoming, the effort by a very few has to be supported. It is not possible, it is intolerable, for the situation to stay as it is right now. A profound discovery has been made which may trip the switch in any number of directions. We need more people working on this, not fewer. We cannot afford to have this research stomped into non-existence. There are large forces out there who seek the demise of the WPI. XMRV research in CFS/ME is what is at stake here. We are engaged a large struggle and the recent conference confirmed the fact to me - that we are at the cutting edge like never before – and threatened like never before.

(Dr David Bell offers his opinions on the same subject here.)

Tuesday, May 25, 2010

London Conference May 24, 2010

(Richard Simpson, Martin Lerner, Invest in ME conference, 2008)

Here is my report from the Invest in ME conference in London that took place on May 24, 2010. This report is my attempt to communicate to others - to those patients who could not attend (including my daughter) - what I saw and heard. I am aware that this report reflects my own bias.

This is the fourth year that I have attended the Invest in ME conference in London. The guiding lights of this effort are Richard and Pia Simpson. These dedicated individuals work tirelessly to make this conference happen. Their hospitable and generous presence is felt everywhere, and I cannot imagine a CFS/ME speaker having a better platform from which to make a presentation.

The one-day conference takes place in a beautiful lecture hall at the very edge of St. James Park. During breaks you can go out and sit in the sun on a park bench and see the world go by. The hall seats 230 people. Each year this conference grows in number, and this year the hall was packed – mostly with patients and patient advocates. Soon the sponsors will have to find a bigger venue. Each year the appropriate government and public health officials are invited to attend and to make a contribution - and each year no one shows up. At least they show a great consistency. (In the UK one is startled by what the NHS does not provide for the citizens of this country. The health care for CFS/ME is Kafkaesque and anyone interested in government run health care should take a good look at this situation and disabuse themselves of their utopian dreams. The situation is pathetic and very sad for the patients, who are desperate.)

Invest in ME invites the top medical or research practitioners to present at this conference. Surprisingly (or not surprisingly) the participants are increasingly American researchers and doctors. The all-day conference delivers a disciplined and hard-hitting set of lectures, one after another. It is an exhausting but rewarding day and the audience member has a front row seat to the most current issues in CFS/ME, warts and all. In the past I have seen Garth Nicholson, Sarah Myhill, John Chia, Kenny de Meirleir, A. Martin Lerner, Basant Puri and Jonathan Kerr. The lectures are usually 45 minutes long and the day is broken into several sections with two tea breaks and a lunch break. A fine lunch is served. During the breaks conversation is encouraged and it is possible to buttonhole the speakers.

The concept behind this conference is healthier and more focused than the semi-annual meetings in the US. These US conferences, of which I have attended two, are four days long and have a great amount of “filler” or academic cannon fodder. The sponsors try to please everyone and in the process please no one. The viewer gets none of this feeling at the Invest in ME conference.

Mondays lectures started early with Dr. Leonard Jason. He is a good choice to get the day going. I have heard Dr. Jason speak a number of times and each time he is better. He has been previously well received at his conference and for good reason. He presents precise and well-organized statistical information attempting to define the parameters of CFS/ME in a legible and understandable fashion. Given the history of CFS/ME and its various confusions, this is not an easy task. Along the way, he delves into subject matter that is quite surrealistic, often bizarre and funny. Dr. Leonard works is a disciplined way, mostly on his own, out of DePaul University in Chicago. He strives towards clarity regarding the language and definitions of CFS, and he is appreciated and respected by a growing number of people.

Dr. Jason’s inclinations and work can be gleaned from the internet. This is true of all the speakers. My intention in writing this report is less to detail the contents of the lectures and more to give a feeling about the conference from my perspective. Things are changing with rapid dissemination of information worldwide and personally, I did not expect to learn a whole bunch of useful items that I did not already know. There were a few tidbits that I will include in this report.

The second presentation was a solid academic talk by Nora Chapman from the University of Nebraska. I imagine that the science of this talk passed over the head of most of the audience, including mine. Chapman and her associates have demonstrated that selection of defective enterovirus in heart and other tissues leads to persistent infections despite active antiviral immune responses. Paired with this lecture was Dr. John Chia, who also works with enteroviruses. Dr. Chia was back for the third straight year and he gave updated research information, including case studies, enumerating his belief that enteroviruses are a major causes in CFS/ME. Dr. Chia strikes a nice balance with his research ideas and his treatment possibilities. In this case, he spoke at length about Equilibrant (Oxymatrine) and its effectiveness in about half of his CFS patients. As he likes to point out, this is a quite a high percentage of success for any CFS protocol. Dr. Chia lectures can be seen online or on DVDs. Cort Johnson has several good interviews of and discussions with Dr. Chia on his site. Dr. Chia collaborates with his son Andrew on research. This year Andrew had to attend classes at the U of Southern California where he is in pharmaceutical school. Among other things he wants to learn and lobby for the development of anti-enteroviral drugs. I was hoping that Andrew could meet my son Peter, who is about his age. Peter was attending the conference and doing a little filming. Maybe next year, the two can meet.

After the morning break, Cheney gave a lecture on oxygen toxicity and diastolic dysfunction. Cheney’s big problem was squeezing his usual three-hour lecture into 45 minutes - and I can say that he did not do a good job of this. Twenty minutes into the lecture I turned to my son Peter and said that Dr. Cheney was proceeding as if he had three hours - and that he had better speed it up. He didn’t and the consequence was that Dr. Cheney had to just stopped in the middle of his lecture. However, it was not a big problem as any 45-minute slice of Dr. Cheney is worth its weight in gold, and this day was no exception. Dr. Cheney is a quite fantastic fellow. This was his first appearance at this UK conference. Most of what he presented can be culled from his research website or from his recent DVD from April 2009. Dr. Cheney gives credence to the new discovery of a retrovirus. After all, Dr. Cheney has long believed that a retrovirus could be at the center of this disorder. In his lecture, Dr. Cheney indicated that 38 of 47 consecutive patients in his practice were XMRV positive by culture testing at VIP lab.

Jonathan Kerr gave one of his exquisite low-key barely audible presentations. He plows along in his genetic work, this time speaking on his continuing work to subtype CFS by SNPs. In a nice bit of symmetry his slides matched his inaudibility - and they were completely washed out and unviewable. What was with this? I guess under current circumstances he was embarrassed to be at this conference and wished he were somewhere else. Dr. Kerr used to do very important work. Each year he seems to have less funding. In the past, at the end of his lecture, he would show his band of researchers, shrinking magnificently each year. This time I noticed that he didn’t show the usual picture of his colleagues - so I guess he doesn’t have any. This sophisticated research is fueled by cash and it seems to be drying up. Certainly the UK government gives him nothing. One gets the feeling that the research of this lonely aspirant languishes. He was going to fetch up with the WPI but I wonder what happened to that? Long ago it was my suggestion that Dr. Kerr move to the US where he could make a real contribution to CFS/ME research instead of stalling out. Surely he knows that there are a lot of Brits living in the US and if he moved to Minneapolis I would take him to Brit’s Tavern for a Speckled Hen.

Nancy Klimas spoke next. She has this sophisticated data sharing system run by Gordon Broderick of the University of Alberta, which could prove elemental in future studies. She gave a talk on immunological biomarkers, which others have described exquisitely This study ties in handsomely with what goes wrong in various pathways and extends the work of other studies. She has a loyal patient base with far reaching implications, including a new treatment center. I prefer Kerr’s quietness or Peterson’s dour seriousness to Klimas’ cheery optimism - to each his own. I have seen her talk on various occasions, perhaps five or six times, and I cannot personally get beyond the impression that "she overplays her part".

Towards the end of the day, things heated up a bit. Brigitte Huber gave a talk on her HERV-K18 research and then added a coda on XMRV. She did an unexpected and gratuitous job of sandbagging Judy Mikovits, who was the next speaker. Huber methodically went through her recent XMRV “study”, explaining in her officious voice that her PCR test was the “assay of choice” and “very sensitive”. She tested 228 samples, 112 from Susan Levine, 105 from Taylor in Chicago, and 11 from the HHV6 foundation. Then she put up a slide with red letters that said, “All samples were negative for XMRV integrase”.

Huber said, “We cannot see in our patients XMRV like in the Science article”. In a further confounding maneuver she hinted or charged that the WPI study was “contaminated”. This charge needs to be challenged, as it is a lie. As she was leaving the lectern Huber said in a wonderfully disingenuous voice (to no one special, but I suppose it was directed towards Judy Mikovits), “Sorry”. It was a revealing and weasily moment.

To me it is becoming obvious that certain people, especially doctors who have been treating patients unsuccessfully for years with half-baked treatments, or researchers who are connected to the academic research money tit, are trying to sink Mikovits and the WPI. This is not science; this is venality. This negative reaction has little to do with whether XMRV has any validity or not. That is a separate issue and there are two sides to the argument; and it needs to be fought out according to established scientific methods. I think that certain critics sense, perhaps correctly, that soon they might be out of a job.

The day before the conference, there was a brain storming session with the various participants at this conference – Cheney, Chia, Huber, Jason, Whittemore, Chapman. It is a great idea and discussion/disagreement (sometimes fierce) is often a necessary and useful result of such exchanges. In this afternoon session, Huber launched an attack on Mikovits. Mikovits did her usual job of defending herself. Huber left the group early (maybe to go shopping?). As she left Huber promised that she would not create a controversy by revealing her study results the next day.

Overnight Huber changed her mind, honest soul that she is, and made her awkward revelation. It was all quite unseemly, and did not fit the tone and tenor of this conference - which is heavily ladened with sick patients, hanging on by a thread. They make a great sacrifice to get to this conference, but not to hear this kind of shit. After all this is really not a scientific conference, and this nice bit of spite was entirely out of place.

When was the last time that Huber gave one iota of thought about CFS patients? I can tell you exactly – it was… Never!

I watched this with fascination, realizing that Huber in her righteousness had put her head on a block and asked to be kicked in the teeth. It was a great setup, a “once in a lifetime situation”, and Mikovits came through big-time, doing what she needed to do. She remained calm (inside she must have been boiling) and delivered a splendid lecture (the best that I have seen her do) and demolishing Huber. The effect was that Huber shrank down to the size of a pea. I had talked to Mikovits the day before about Huber and advised her in general to disregard her critics and just roll over this woman (not that Mikovits spends one moment listening to me). Some critics need to be rolled and this was just what happened. At the end of her lecture, Mikovits got a loud and sustained applause showing deeply felt appreciation.

The moderator of the conference once again was Malcolm Hooper, who represents the best of the UK ME doctors and researchers. Dr. Hooper is known for the Hooper files, which are included on the conference DVD to be released in several weeks. Dr. Hooper has an easygoing manner, moves things long nicely, keeps the conversation focused and gives helpful commentary when necessary. This man obviously has multiple gifts.

Invest in ME’s primary idea (I believe) in creating this conference was to bring the most recent research and treatment information to the UK, a tidal backwater in regards to recognition of the seriousness of this disease (not that the US is much better). Beyond this they want to facilitate these personalities to sit down and talk together and to share their ideas. In general CFS doctors and researchers are a lonely band of folks, comfortable and happy with their isolation. In other words their social skills are limited, especially in relating to each other. In the last few years, things have gotten much better in this regard, mainly due to this conference and a few other “retreats” of CFS/ME notables, supported by private donors.

The high-mindedness of these talks always disintegrates at the end of the day with a plenary session where patients and patient advocates plead for treatment advice – treatment readily available in the US and denied the patients in the UK. (Whether these treatments work or not is another conversation.)

The question is why, with so much of this information readily available, one would bother to attend this conference. It is a good question. My answer is that this conference allows me to get a sense of the direction of things, the “zeitgeist” of this field - and also to talk directly to the participants in the more informal parts of the conference. Unexpected things happen and one picks up bit of information or has other items reinforced. For instance, I got to hear Dr. Chia talk for a few hours at dinner. What a pleasure this was! I got to watch him “interrogate” a patient advocate about their patient. Dr. Chia seeks out particular symptoms and circumstances that occur at the onset of the illness. It is a bit like 19th century medicine - but CFS/Me is a 19th century disease. And this form of questioning yields answers for Dr. Chia.

I have been inclined towards Dr. Chia since I first heard him speak. He has a forthright, unadorned quality that is makes you pay attention. Dr. Chia has worked in the trenches for twenty or more years, learning about this illness the hard way, and developing his own resources to maintain and increase his research. Dr. Chia is definitely onto something “specific” - in a field where so much is elusive and speculative. If I were going to give a newcomer to this field a bit of advice (and I do not have a whole lot to give) I would recommend learning about Dr. Chia, his testing and his treatment. It is a good bet, and perhaps you will get lucky.

At another point, I got to hear Dr. Cheney give an informal mini-lecture on parts of his protocol: artusenate, minocycline, wormwood, and cell signaling factors. In regards to this last item Dr. Cheney related his enthusiasm about a new gel that he has made from afterbirth material. Citing studies on hamsters, Cheney described a process where non-stem cell material is extracted from stem cells and injected back into the hamsters, curing them as if it were stem cells. Dr. Cheney has made a similar gel from human afterbirth that gets a very strong reaction on his Echo machine, much stronger than any existing CSF. He is very excited about this.

I observed several individuals from the WPI doing their presentations and establishing connections. I can assure you that the announcement of the demise of the WPI is premature. They are moving faster than ever. The WPI is on a trajectory that will leave its critics in the dust. While others quibble over this and that, and lay traps to distract them, the WPI are putting all that aside and focusing on the task at hand. More specific and accurate testing is close at hand, as is means to track improvement in patient’s immune status, as well as clinical trials using various existing anti-retroviral drugs. Peptide T is still in the picture. (Another non-WPI source indicates that GCMAF might be a player.) (Time will tell in all this and the nay-sayers have put great effort into trying to cut off the funding and grants for the WPI. In this they have been somewhat successful, leaving it to the rest of us to do what we can to increase funding for this important scientific research.)

The WPI is in the process of projecting and clarifying their mission and of making collaborative connections with the international community in a manner that has never been seen before in this disease.

Needless to say, this was a great conference.

Christopher Cairns