ILADS conference 2010 - Dr. Marcus Conant

The Patient Advocate came to the ILADS conference in Jersey City, NJ to hear several talks. The ILADS organizers departed from past practices and invited five non-ILADS members to give presentations. In the PA’s estimation, this is in reaction to the changed ME/CFS topography since October 2009. There is no other explanation for it. Dr. Burrascano, a major lyme doctor, obviously engineered having these HIV/XMRV/Infection Disease doctors give presentations. Things are changing at the ILADS conference.

The Patient Advocate paid his conference fee to hear three presentations. Foremost among these was Dr. Marcus Conant, a relative newcomer to the ME/CFS field at the age of 73. If you want to learn more about Dr Conant look here. The Patient Advocate was not disappointed. This guy is great. We will be seeing more of Dr. Conant as XMRV moves relentlessly along.

Dr. Conant gave a talk entitled “Lessons - learned from HIV”. Dr. Conant, who was in the front lines of the AIDS diagnosis and treatment, is no shrinking violet. In the early 1980's he was one of a very few doctors in San Francisco who were willing to deal with doomed patients - often dead in weeks or months. Dr. Conant speaks his mind and he does not flinch. He began his talk by referencing the plague of 1348 and drew parallels, past and present, to it. He spoke in an impassioned fashion of the advocacy problems of trying to defeat ignorance, and how to move the agenda forward. His presentation had very humorous – even caustically absurd - moments to it, indicating the complex and emphathetic nature of his rangy personality. His central recommendation is to define the cause and to focus the research. In doing this Dr. Conant recommended not groveling, not fawning, not eliciting sympathy - just moving forward with clarity and determination. He encouraged activism and self-reliance regarding research, saying “Congress is your last resource, not the first”. Dr. Conant obviously does not get sidetracked or waste his time talking to non-helpful individuals. On the other hand he urges efforts toward inclusion - not fracturing - by trying to bring your adversaries to your side of the issues. The talk was deeply emotional and Dr. Conant, an unknown to most of the attendees, made a strong connection, as he was given a spontaneous standing ovation by the entire 200+ people in the hall.

The Patient Advocate has read on the internet that Dr. Conant has left his practice in San Francisco and come to New York because of an interest in this new retrovirus named XMRV. This was confirmed in conversation with him. The Patient Advocate surmises that Dr. Conant thinks that XMRV is a potential player in ME/CFS. Dr. Conant presents lyme and its affiliate, ME/CFS, as an infectious disease. With this in mind the Patient Advocate sees Dr. Conant as “an advocate for ME/CFS research and treatment”. At a minimum Dr. Conant’s expertise can be involved in upcoming treatment trials of antiretroviral drugs in ME/CFS patients.

The atmosphere of the ILADS conference was diametrically opposed to the CFSAC Science Day, which should be canceled. Much of this was due to the ILADS presentations of these four pro XMRV-related infectious disease physicians. There was none of the self-satisfied, politically-motivated vapors that filled the HHS conference room. The Patient Advocate saw Science Day as an attempt to put the breaks on further revelations about the connection of XMRV. The PA has to ask, why is this?

It becomes increasing obvious to the Patient Advocate that the FDA and others are really freaked out over the blood supply, and their responsibility for this. The FDA is going to be exposed to insurance claims coming from those who have been made sick through transfusions. This is a repeat of the AIDS epidemic. It is in their interest to string this out, until the Blood working group reports - and longer.

Other reasons for these delaying tactic were advanced to me by a knowledgeable and insightful friend:

“Where the money has not simply disappeared, or been poured down a rathole, it went to fund the amateur psychiatry of Stephen Straus or Bill Reeves. (Nobody seemed concerned at the time about them publishing work far outside their areas of expertise, except, as always Lenny Jason.) Avoiding exposure of this, with concomitant collateral damage to institutions, and future funding, is the first priority of those in charge. As second goal is to wrest control from WPI, so new research serves to provide more funding for the same institutions who screwed around, wasted time and treated funding for this subject as a kind of slush fund to cover miscellaneous expenses not covered by other allegations.

A third goal is to avoid committing the federal government to paying disability, or diagnostic and treatment costs, for another few million people. Current expenditures for HIV run around $1,000 per person per month -- for life. Since we are talking about another retrovirus and some of the same drugs, costs for treating ME/CFS are unlikely to be lower. Taking on a new $1,000,000,000/month liability was not in the Congressional plans for medical reform. Projected funding is already inadequate without this."

Yesterday was Conant, Montoya and Brewer. Today it is Mikovits.

Put this gal in charge - let her run the show.

The Patient Advocate listened to the public testimony at the CFSAC, many of which were inspired presentations.These testimonies are available on the internet. The ME/CFS patients and advocates are articulate, passionate and focused - each in a different way. Their collective testimony is the very best and strongest part of these meetings.

The Patient Advocate would like to highlight one testimony and make a suggestion. Let's get rid of all the people on the CFSAC committee and put Dr. Joan Grobstein in charge. Let her pick the new members. Dr. Grobstein, 11 years ill with ME/CFS, can run things from her couch in her home. The HHS can hire as many assistants as necessary - and they can be trained to deal with the new ME/CFS committee head in a manner that is conducive to her illness.

Watch how much clarity and direction that Dr. Grobstein packs into the measly five minutes that they give her.

CFSAC - Day 2

Dr. Grobstein is "Public comment - Speaker 2". Take the time to watch this. (Hopefully it will be posted soon on youtube for more easy access.)

The Patient Advocate also presents Dr. Grobstein's written 2010 testimony, which includes some important suggestions not included in her oral presentation. It is worth reading.

CFSAC Written Testimony October, 2010
Joan Grobstein, M.D.

I am a former neonatologist who had to retire from practice in 2000 due to illness. I have had ME/CFS since 1999. Before retiring I worked at the Neonatal Intensive Care Units of Children’s Hospital of Philadelphia and the Hospital of the University of Pennsylvania.

At this Committee’s meeting a year ago, I spoke about science and MyalgicEncephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS. Specifically, I addressed the negative impact of the CDC’s “empirical” definition of CFS on scientific research into the causes of and potential treatments for ME/CFS. A resolution was passed at that meeting stating that the “CFSAC rejects the empirical definition” of CFS. Despite this recommendation, the CDC has published 3 papers in the past year using the “empirical” definition, including a paper which was unable to find any evidence of XMRV in blood from a cohort of patients with “empirically” defined CFS or in healthy controls, and another paper which discussed personality features and personality disorders in the same group of patients. At the last CFSAC meeting six months ago, Dr. Unger stated that she stood by the CDC’s estimate of the number of people affected by CFS in the United States, a number based on the “empirical” definition. There is no evidence that the CDC has paid any attention to the expressed views of this Committee about the “empirical” definition. Communication with the leadership of the CFS program at the CDC about the definition and other issues has been next to impossible for other professionals involved with ME/CFS as well.

At the same CFSAC meeting six months ago, I confined my comments to the

Committee’s charter, at the Committee’s request. At that meeting, an amendment was made to the Function section of the charter to include the statement “the current state of knowledge about the epidemiology, etiology(s), biomarkers, and risk factors relating to Chronic Fatigue Syndrome and identifying potential opportunities in these areas”. The words etiology(s) and biomarkers are not in the current version of the charter on the Committee’s website.

It must be frustrating to members of the Committee to have their recommendations ignored so blatantly. Taxpayers are spending a reported $130,000 each year on this Committee. We do expect effectiveness. I’m sure the dedicated experts who take the time to serve on the Committee also expect that their recommendations will be implemented, especially the ones that are revenue-neutral.

These are big issues: (1) that the Center for Disease Control of the United States of America is continuing to use a discredited definition in publications about CFS, and (2) that the charter of this Committee ignores the importance of a search for the cause of a disease that affects one million Americans and their family members. But today I want to move on from discussions of science and bureaucracy and talk about medicine.

Medicine is an applied science. Doctors take scientific facts and apply them in real world situations in order to improve the lives of real people. Part of the reality of medical practice is that sometimes doctors don’t yet have all the information we need to make a fully informed decision. And yet we must act. For example, a patient arrives in the emergency room in shock and we may not initially know why. But we have to act. We draw tests to clarify the cause of the patient’s low blood pressure at the same time that we start IV infusions to treat the low blood pressure. We may give antibiotics for the most likely infections before we know what the infection is, or even if infection is the cause of the patient’s condition. We act.

At the present time, there is no action for patients with ME/CFS. We know, for example, that many patients have low blood pressure and orthostatic intolerance, yet there is no recommendation to treat the low blood pressure, or even to do tests to establish its cause, in the CDC’s CFS “toolkit” for professionals. We know many patients have chronic viral infections, yet there is no recommendation to treat those infections. The CDC “tool kit” for CFS does not recommend testing for any infections. We know that many patients have abnormalities of immune function yet there is no recommendation to treat those abnormalities. We know a lot about Canadian Consensus Criteria-defined ME/CFS, but we don’t apply that knowledge to treat the disease.

In the past year we have learned a lot about MLVs, including XMRV, which present an attractive, although as yet unproven, hypothesis about the underlying cause of ME/CFS: a newly identified family of retroviruses may affect the immune system causing patients to be susceptible to various new or re-activated viral infections, as well as other possible infections, and perhaps themselves are causing much of the diverse symptomatology of the disease. It is time to act. Despite the incompleteness of our knowledge, we can treat. We must treat.

We know from past clinical trials that some patients improve, if not recover completely, when treated with antivirals appropriate for the viral infections that they have as demonstrated by appropriate lab tests. These clinical trials include, but are not limited to: enteroviruses, as shown by Dr. Chia, various herpesviruses, as shown by Dr. Lerner, and HHV-6, as shown by Dr.Montoya. Other infectious agents that have been shown to be common in ME/CFS patients include chlamydia, mycoplasma, and parvovirus, among others. I propose a randomized controlled trial of XMRV positive patients in which patients are randomly assigned to two groups: half the patients receive treatments for the infections that they are shown to have, and the other half receive treatments for the infections that they are shown to have and, in addition, are given the three antiretrovirals that have been shown by Dr. Singh to be active against XMRV: raltegravir, zidovudine and tenofovir. The primary outcome measure should be Karnofsky score, i.e., patient functionality. This is what patients care about: what they are able to do in their daily lives. Appropriate measures of the other, non-retroviral, infections should also be followed as secondary outcome measures. There is no currently accepted measure of XMRV activity, but it is not necessary to follow viral counts or to have an accepted immunological marker to establish efficacy of anti-retroviral treatment. Improved patient functionality or a more rapid eradication of other infectious agents will establish efficacy. Raltegravir, zidovudine and tenofovir have been used in thousands of AIDS patients, and their safety profiles are well understood.

I’m sure some will argue that there should be a third group in this trial, a group that receives no treatment for the infections that they have. I personally think that it would be unethical to include a group that receives no treatment. The word Tuskegee comes to mind. Although, ME/CFS patients were not deliberately infected, unlike the men in the Tuskegee experiment, it
is, in my opinion, unethical not to offer treatment to patients with known infections. However, I do realize that the current standard protocol for ME/CFS at this time is not to test for other infections, and, even if found, not to treat them. As a physician, this is unacceptable to me.

One could also argue that a third group should receive antiretrovirals alone. I am not opposed to this. I suspect all infections will need to be treated, but, since this is not documented, it is a reasonable question to research.

People with ME/CFS have been extremely patient with the medical and scientific community. However, our patience is not inexhaustible. Despite the cautionary mumbling of some physicians and scientists, people want to be treated for this serious, debilitating illness. We read the scientific papers on the internet. Despite our intermittent brain fog, we are not stupid. We will seek treatment. We will not wait for scientists to satisfy their intellects and establish who is “right”. If clinical trials are delayed too long it may be impossible to find untreated patients to enroll. At a certain point, it will also be impossible to claim therapeutic equipoise, because the mass of anecdotal evidence will be impossible to ignore.

Research cannot be done without funding, and funding for ME/CFS research at the NIH has been abysmally low. The NIH website gives an estimate of 5 million dollars, or about 5 dollars per patient, for 2010. ME/CFS received no ARRA funding for 2010. It is time to establish designated funding levels for ME/CFS.

I have spent my life working primarily as a clinician, not a researcher. I am therefore not particularly familiar with different types of grants or the mechanism of organizing randomized controlled trials with NIH funding. I have neither the time or the energy to get that information now, and it is not my job to do so. A request for proposals should come from the NIH for the necessary projects. More research dollars are urgently needed for this significantly underfunded, serious illness. It is time to act.

Many thanks to all the people who serve on this Committee and support this Committee. It is my hope that the future will soon be much brighter for people with ME/CFS.


References:

http://www.cdc.gov/cfs/toolkit/diagnosis.html

http://www.cdc.gov/cfs/toolkit/treatment.html

Switzer WM, Jia H, Hohn O, Zheng H, Tang S, Shankar A, Bannert N, Simmons G, Hendry RM, Falkenberg VR, Reeves WC, Heneine W., Absence of evidence of xenotropic murine leukemia virus-related virus infection in persons with chronic fatigue syndrome and healthy controls in the United States., Retrovirology. 2010 Jul 1;7:57.

Maloney EM, Boneva RS, Lin JM, Reeves WC, Chronic fatigue syndrome is associated with metabolic syndrome: results from a case-control study in Georgia. Metabolism. 2010 Sep;59(9):1351-7. Epub 2010 Jan 27.

Nater UM, Jones JF, Lin JM, Maloney E, Reeves WC, Heim C, Personality features and personality disorders in chronic fatigue
syndrome: a population-based study, Psychother Psychosom. 2010;79(5):312-8. Epub 2010 Jul 28.

John K. Chia, Andrew Y. Chia, Ribavirin and Interferon-a for the Treatment of Patients with Chronic Fatigue Syndrome Associated with Persistent Coxsackievirus B Infection: A Preliminary Observation, The Journal of Applied Research, Vol. 4, No. 2, 2004

A Martin Lerner, Safedin Beqaj, James T Fitzgerald, Ken Gill, Carol Gill, James Edington, Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome, Virus Adaptation and Treatment 2010:2 47–57

Singh IR, Gorzynski JE, Drobysheva D, Bassit L, Schinazi RF., Raltegravir is a potentinhibitor of XMRV, a virus implicated in prostate cancer and chronic fatigue syndrome., PLoS One. 2010 Apr 1;5(4):e9948 http://report.nih.gov/rcdc/categories/

Hire this guy.

Dr. Michael Snyderman

Yesterday's question and answer session was a grinding bore. The tone was set by an incredibly irritating moderator from the UK. Who was this guy? Where do they find these people? He was like a bad English actor, a bit drunk, a bit incoherent. The session quickly evolved into a series of incredibly stupid questions. Each questioner, deeply ignorant of the subject, felt the need to say whatever came into their heads. And then there was the obligatory researcher griping by a woman who needed to have the door closed on her publicly. These guys and gals have no shame. They have no ability to restrain themselves, and this inability allows the situation to fall apart very quickly. Towards the end, an oncologist from Buffalo, pictured above, asked the only good question of the day. His question got some of the members of the panel to focus on what is at hand. This fellow's name is Dr. Michael Snyderman. Hire this guy - he is great.

Hopefully there were other people at this conference like Dr. Snyderman - men and women who can identify the problem and focus their minds on it. Make no mistake, in spite of the circus idiocy of this conference, the WPI is building allies, accumulating collaborators. It is obviously slow going, but it is happening. The WPI is holding all the cards. They just need to keep doing what they are doing, picking up the smart folks and forgetting about the rest. Seeing Dr. Snyderman in this sea of crap gave me hope - and no, the Patient Advocate had no idea about him previously.

(On September 28th Jamie Deckoff-Jones published a very important post on Dr. Snyderman's poster paper at the XMRV conference. Later the same week Mindy Kitei wrote a post on Dr. Snyderman and promised more to come in the form of a longer interview. These are two of the key bloggers on XMRV or MLV-related viruses.)

InvestinME DVD - Pia and Richard Simpson

It has been two months now since the May 2010 InvestinME conference. The receipt of the DVD makes me want to reflect on this organization InvestinME that you can read about here and the guiding lights of this organization Pia and Richard Simpson. These people deliver the goods and they should be more celebrated for bringing cohesion and clarity to the research field of ME/CFS.

Today I received my copy of the DVD from the May 2010 London ME/CFS conference. Even though I attended this annual conference (for the fourth time) I was excited to receive the DVD - and receiving it reminded me how very exciting this conference is - and I want to thank again Richard and Pia Simpson's selfless efforts for bringing us this information. I watched with fascination the round table discussion of the speakers that took place the afternoon before the conference. This year's speakers - John Chia, Brigitte Huber, Judy Mikovits, Annette Whittemore, Paul Cheney, Leonard Jason, Jonathan Kerr and Nancy Klimas - gathered for an hour and a half and discussed pertinent issues. The conversation was moderated by Malcolm Hooper. Dr. Hooper is excellent at guiding a group conversation and/or a series of lectures. His mild mannered yet focused personality brings a collective sense of harmony. He is also not devoid of an excellent sense of humor, a quality that I insist on in a "real person". (If one were convinced that moderating a lecture series is not a particular and delicate skill, one only need to have attended this conference several years ago when a quickly forgotten personality did this job in a quite poor fashion). Yes I like Dr. Malcolm Hooper.

All of these people are becoming like old friends to me - and my admiration increases on seeing them in action in a group conversation. I have less of a kindly feeling about Dr. Huber, but, as others suggest, this might just be me. Others have suggested that she is another point of view - so we will just leave it at that. I will try to restrain myself from revealing further information about Huber that indicates more clearly why she is unwelcome in the large and diverse (and expanding) group that secures my admiration.

Jonathan Kerr was missing in this group conversation, Cheney came late, and Huber left early.

Of course one could piece together some of the conversation's content from the next day's public lectures (and I did), but there is nothing like an extemporaneous give and take by very sharp and articulate people. I recommend trying to get ahold of a copy of this DVD and watching the round table discussion particularly. It is quite revealing and one can get a very quick sense of the personalities and issues involved.

This fellow Leonard Jason has done so much good in insisting on clarifying the language surrounding ME/CFS. His studies, which are carried on by "his group" (himself and a few graduate students) at DePaul University are not medical studies as such but more language studies - and the defining of terms. Dr. Jason is less interested in agreement, more interested in clarity.

In viewing this round table, it seemed to me that Cheney, Klimas, Jason, Chia, and Mikovits were all talking about the same subject. Their opinions of course differ but there is a willingness to listen to each other and to acknowledge the existence of the others. With Huber, it was slightly different. It is obvious that she has no clue about this illness or the patients who suffer from it. Whether this is necessary for scientific research, who knows? - but it certainly must have some bearing on who one includes in a particular study. Huber was invited to this conference because of her interest in an endogenous retrovirus HERV-K18 and its association with ME/CFS. My feeling, for what it is worth, is that it was a mistake to invite Huber, and that she brought nothing of use beyond being a foil for Mikovits. This in itself proved to be exciting, but I am not sure how much it moved the situation along. In this roundtable Huber mentioned more than once her idea that Mikovits' samples were contaminated. This, in itself, took her out of the conversation. I think Huber could use a few counseling sessions with Dr. Jason.

Many other interesting subjects were discussed in this forum. Naturally XMRV was the underlying theme. Another long discussion focused on biomarkers. Many ideas were generated. Among other things Cheney advanced his belief that "oxygen toxicity" was a foolproof biomarker - and that testing could easily be done in any cardiologist's office. At the moment no one else has picked up on this, but I have a strong hunch that this is about to change.

In watching this DVD, try to remember that InvestinME is not a large monolithic entity with tons of money. This fly by night organization patches together funding from various sources. This conference, this DVD exchange of information, is brought to us by the efforts of a very few generous souls. It is important to remember this - that most efforts in ME/CFS are philanthropic and visionary efforts by a very few individuals, working alone and working very hard. We all benefit from these efforts. It is difficult to express enough thanks to these people.

All of this, the conference, the roundtable, the DVD, is brought to you by InvestinME. This conference is the brainchild of Richard and Pia Simpson. The Simpsons have two female children with ME/CFS. They have taken it upon themselves to do what many of us wish that we could do. They do not stand around wringing their hands. They take on the problem directly, and in a country where this illness officially does not exist. The Simpsons have developed a means where they could consolidate the most articulate and serious research. Not enough credit is given to them.

In viewing this DVD I am reminded of my very great admiration for this couple and their most successful efforts to bring researchers and clinicians together. Nothing else is like this conference.

Over the years I have heard many fine physicians and researchers give presentations: Kenny de Meirleir, Jonathan Kerr, Sarah Myhill, Garth Nicholson, Dan Peterson, A. Martin Lerner, John Chia (three times), Leonard Jason (several times), Byron Hyde, and various researchers from Norway, Sweden and the UK. For the last few years the conference has leaned heavily on US researchers and clinicians, indicating a sense that this is where research is consolidating. This conference goes a very long way towards establishing the serious nature of the illness and demolishing the distinction between the American brand of CFS and the UK ME. This conference assumes and sanctions the older term of ME - no bullshit here.

This DVD lecture series is loaded with excellent lectures. I would recommend especially Paul Cheney (too short), John Chia, Mikovits and Leonard Jason.

Putting together this one day speaker panel is difficult, especially since decisions have to be made months ahead. It was great to see Cheney in the UK and I would like to see him come back for another year and be given more time to speak. Anything from the WPI and their growing affiliates is okay with me. If I were going to make one suggestion it would be to invite Dr. Joe Brewer. He is noticeably missing from conferences in general and yet he (along with Montoya) is best poised for near-term treatment. Dr. Jose Montoya would be another person worth including. I also like Dr. Dale Guyer, but he is on the periphery of the ME/CFS field.

The one day format of this conference is hard-hitting and intense. It is a long day. For the speakers and others concerned individuals the communication occurs on the day before the conference both with the round table and a dinner. The speakers are put up in the same hotel. In this way, communication amongst the participants and others is encouraged. I myself have observed numerous serious conversations going on in the hotel and at the conference during breaks and lunch. It is a great idea to get these people together and have an informal go at each other. InvestinME has done a great service in facilitating such conversations.

This conference is quite different than the conference in the US. In the first place the US conference is every two years, which is not often enough Additionally the US conference tries to covers too much ground, presents too many lectures, including a great deal of academic cannon fodder. The conference participant has to wade through a tremendous amount of crap without any clarification, and this goes on for four days. The Simpsons at InvestinME (probably because they are not a committee and do not have competing interests) have the courage to define the program, and to present something that is hard-hitting, up to the minute and practical. With a little more money and a little more help, maybe they can expand their efforts to having a conference every six months. Vast amounts of money would have to flow in their direction and the opposite is more likely. For the moment, check out this DVD and consider what these two individuals have brought to us for our betterment. (And it is worth noticing that they do not charge you $300 for this DVD.)

Lest I overlook someone in this fine organization I want to include a link to other organizers and contributors and congratulate them all on their fine work.

It is worth remembering that InvestinME came to the rescue after Jonathan Kerr blew a tire on his XMRV study, pledging to work in cooperation with the WPI on XMRV in UK patients, Funded by the modest pledges of this organization, a study was proposed to look for XMRV using the methods of the WPI. InvestinME clearly understands the legitimate ME/CFS patient population and we can expect some decent results from this study. InvestinME announced this support in March and three months is an adequate time for a study to be completed. The Patient Advocate looks forward to these results, but wonders why patient-driven research is necessary in this situation.

1996 Prime Time report on CFS

In reading this morning I came upon this video posted by ixchelkali on the Phoenix Rising message board. Surprisingly I had not seen this before, but it struck me as something important to watch at this time. I decided to post it here for those that might not have seen ixchelkali's post. I thank ixchelkali for this reference.

Primetime from Barborka on Vimeo.

GcMAF

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:http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1379980

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 /www.gcmaf.co.uk/info/

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?

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