Repost of Laurel's video

Here is an exquisite Holiday gift from Laurel. Take a look at this video. It is the one of the best that the Patient Advocate has seen on ME/CFS - perhaps the very best. Yes, it is the very best. It was made by Laurel of dreamsatstake.blogspot.com

Her blog is one of the premier blogs on this illness. The Patient Advocate only posts this video here in order to direct you to her blogsite.

The Patient Advocate recommends going to Laurel's site to look at this video - as she has a commentary on the making of it. This is a remarkably poignent and powerful video made my a remarkable woman. What a fine effort!

Dr. Marcus Conant and Advocacy

In his quest to help his daughter get better, the Patient Advocate went to hear Dr. Marcus Conant at the recent ILADS conference. Dr. Conant was one of the courageous few that clinically engaged the AIDS epidemic in San Francisco in the early 1980's. Dr Conant did not flinch in the face of this terrible burden thrust upon him. Instead he treated these near dead and dying patients - and became a great advocate for them. He knows the business of disease advocacy, and when he speaks it makes sense to listen.

Recently Dr. Conant moved from S.F. to New York, where he is a consultant. Among other things, he has an interest in this XMRV retrovirus. Dr. Conant sees many parallels of the current situation with neuro-immune illness and the early years with AIDS. An astute Dr. Burrascano invited Dr. Conant to lecture. Dr. Conant gave his lecture without remuneration.

In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a stirring talk enumerating a number of key points. The Patient Advocate has read over his notes on this lecture and Dr. Conant's advice to us follows:

"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."

"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme)

"Focus on research, not suffering."

"Don't trust the press." "The press is not your friend." - they are corrupt and have another agenda.

"Congress is your last resource, not your first." "The federal government is not your friend." You first have to prove that something is there.

"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time. (Dr. Conant was not talking about deadly enemies here. He expressed clearly that he would not waste any time on someone whose mind he could not change. In this above quote, he was emphasizing the notion of inclusion - and of not unnecessarily making enemies)

“Develop coordinated activism" How do we best get funds to study this disease?

A month later this presentation still reverberates in the mind and heart of the Patient Advocate. This talk could not have come at a better time.

With ME/CFS, we stand at a crossroads. At this moment the government is sitting on the HHS XMRV blood study group's phase II study. The government is worried about the blood supply. The government has the data and it is pretty convincing. What will they do and when?

Meanwhile NIH research money is not coming to the WPI. The WPI funding applications have been turned down at least four times. They are having trouble getting their current research published in legitimate journals. Why is this? Whatever limited funding they have is drying up. Whether this all is by design is anyone's guess.

Meanwhile other research into XMRV is going on around the country in both expected and unexpected places, fueled by discretionary funding or siphoned off from other projects. Researchers are drawn by natural interest to this new retrovirus. Here is one recent study. And here is another (from MN, no less). These ongoing research projects hold the key to the solution of this ME/CFS XMRV-related illness. Science is the answer. The WPI and their affiliates triggered this. They tripped the switch on all this research. This flashpoint Institute needs funding in order to come up with more answers. Research is the answer. We cannot wait any longer.

(The PA wrote about Dr. Conant before, but this needs repeating)

Maija Haavisto

Here is a video of Maija Haavisto speaking about her experience with Low Dose Naltrexone (LDN).

The Patient Advocate has wanted to write something about this amazing young woman for some time. Now, with this excellent and informative video, is a good time to do this. Maija Haavisto, a ME/CFS patient herself, has written an excellent book on drug and supplement treatments for ME/CFS. The book is called "Reviving the Broken Marionette" and it can be purchased on her blog site or on Amazon. This book is a must read for anyone dealing with this illness. The Patient Advocate, in his efforts to help his daughter, has consulted this book many, many times. If the PA were to recommend buying one book on ME/CFS, this would be it.

Maija is a self-starter who has done a tremendous amount of research on various drugs that can potentially be helpful in ME/CFS. This self-directed research evolves from her desire to cure herself of this illness. Maiji clearly believes that there are existing drugs and therapies that can bring relief or partial relief to this strange illness. While she is correct in this assessment, she is also open to suggestion. She is a particularly strong advocate of LDN as a ME/CFS therapy. Take a look at this video and admire the efforts of this young woman.

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.