Saturday, December 25, 2010

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!

Saturday, November 20, 2010

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)

Sunday, November 14, 2010

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.

Sunday, October 17, 2010

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.

Wednesday, October 13, 2010

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/

Thursday, September 9, 2010

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.)

Tuesday, July 27, 2010

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.

Wednesday, July 21, 2010

Stand back - wall collapsing

The NIH study is soon to be released.

Many things are coming together this next month. While there have been delays (and they are incredibly irritating), there is now a "great convergence". One confirmation study is about to surface - and there will be others. (All that is needed to get the ball rolling is this one NIH study.) Right now the wall is falling over, and it is going to fall on the bad guys and crush them. Never has their been a more deserving lot. Little or no effort will be made to dig them out. Some will be out with shovels, adding to the pile.

In the next few weeks, a new antibody test will be available from VIPdx. The lab is taking its time and wants to get this right. This in itself will be the best "confirmation study" - as increasing numbers of ill patients will test positive for XMRV. The test will be exported to various other labs, including Redlabs in Belgium, where some culture testing has already begun. Most importantly, next month, the Whittemore Peterson Institute will be dedicated on the University of Nevada campus in Reno, Nevada. This is the first institute- a large and beautiful structure - devoted to research and treatment of ME/CFS and other neuro-immune illnesses. Finally ME/CFS will have a home - a physical center for treatment and research.

Very soon full attention will be focussed on XMRV - and on trying to establish its involvement or causality in ME/CFS. Research will accelerate. Treatment protocols will be designed and, in this manner, the causality of XMRV will be established (just as in HIV). Patients, in trials, will be given drugs or a combination of drugs - and their immune response and viral loads will be tracked. GSK, Abbott and other pharmaceutical companies will get involved and design their own trials.

Some doctors already think that existing therapies for XMRV are available - either through inhibiting the virus (or viruses) or through regulating the immune system - or most likely a combination of the two. Working out protocols will take time. This is no easy matter, but at least - finally - there will be movement in the right direction. And most important, research will broaden and consolidate in ways that are hard to imagine at this time.

As one CFS clinician says regarding XMRV: "This is it! This is what we have been waiting for."

(No matter what one thinks of Harry Reid as a politiician, there is one certainty. Harry Reid is the best friend of CFS/ME in the United States government. It is fair to say that without Reid the WPI building would not have been built and that perhaps XMRV itself would not have been discovered. Harry Reid is currently in a close struggle with a Tea Party challenger. Anyone in Nevada who has CFS/ME, or knows anyone with CFS/ME, had better think twice before voting to oust Reid. It was no coincidence that Obama was in Las Vegas last week (campaigning for Harry Reid) on the very day that news arrived that the Alter study would be released soon. One can surmise that Reid and other Nevada representatives were in meetings last week shortly before this with the HHS regarding the absurd "scientific hold" of the NIH study. One can imagine the shuffling and stammering of the CDC scientists as their fingers were held to the flame. The shortest and most believable story is that Obama, on hearing from Reid of this pathetic move at the CDC, made a call and got the HHS "off the pot". Someone really jumped fast on this one - the clearest indication of an unexpected call "from the top". "Hey douchebag, the boss man wants you!")

Saturday, July 10, 2010

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.

Tuesday, June 22, 2010

"Ouch!" - losers lose

Late in the day on June 22, 2010 a preliminary news report was released regarding confirmation of the October 8, 2009 Science paper on the connection of XMRV and CFS/ME. The report indicates that both the FDA and the NIH have confirmed the association of XMRV with CFS/ME and the potential that this retrovirus is communicable. You can read about is here. This confirmation was a long time in coming, and a great deal of momentum was lost in the interval. However, the moment of truth has now arrived and, for those in the know, it is not surprising news.

The game that has been played for the last eight or nine months is over. The WPI, this small outfit now rising up very large from the beautiful northern Nevada desert, has won. Suddenly the losers have to get on a long uncomfortable train ride to nowhere and eat bad food. The real winners can now get down to business - and things can move forward.

With this very great bit of news, the WPI and their outreach friends can move on to testing, expanded research and treatment options for this nasty illness.

Here are comments of Hillary Johnson.

Sunday, June 13, 2010

The Igniter: Annette Whittemore writes on the WPI.


This article appeared in Molecular Interventions June 2010. This is a long article but well worth the read, especially in light of all the crap floating around today regarding serious CFS/ME research. This article might get some readers to focus a bit more on what this very small institute is trying to do.

The Whittemore Peterson Institute
Building the bridges through private and public sector collaboration

Annette Whittemore

The Whittemore Peterson Institute’s (WPI) publication of its ground-breaking study on October 8, 2009, of the link between a cancer-related retrovirus, XMRV, and patients with myalgic encephalomyelitis/chronic fatigue syndrome (“ME/CFS”) brings a desperately needed legitimacy to a complex yet controversial and misunderstood disease (1). News of this significant association brought hope to millions around the world who have suffered in silence from its devastating effects. Perhaps, just as important, the discovery of XMRV infection in humans allows the medical world to construct a testable hypothesis of how XMRV may cause or contribute to illnesses across a wide spectrum of chronic inflammatory diseases and cancers and new paradigms of treatment and perhaps prevention.

That the discovery happened in just three years of a small research institute’s existence is almost as amazing as the extraordinary scientific work. This is the story of how and why the Whittemore Peterson Institute came to be. It is a story of multiple collaborations at every level, revealing a blueprint for other groups of dedicated scientists, doctors, and philanthropists to create greater progress through unique and selfless partnerships across nontraditional boundaries. Like other philanthropic endeavors, it began as an idea evidenced through personal suffering and acted upon after all other avenues had failed.

The personal decision to commit time and money to build an institute for patients with neuroimmune diseases came from a desperate need for medical solutions to a disease that had been destroying our daughter’s life for over twenty years. We were also faced with the reality that experienced physicians were retiring without passing on their knowledge of ME/CFS to new physicians . In addition, the existing medical establishment lacked both knowledge and medical tools to effectively treat patients who suffered the debilitating effects of this neurological disease. Around the world, those who suffer with ME/CFS have been told that their physical disorder is a manifestation of a psychiatric disease. Subsequently, these patients may then be denied medical support by their government-run health care programs.

Box 1. The Historical Description of Myalgic Encephalomyelitis Myalgic Encephalomyelitis was first described by Melvin Ramsey in the UK after an outbreak in the 1950s [(5–7), see also (8)]. He coined the term to describe the muscle pain and symptoms of brain and spinal-cord inflammation its sufferers experienced. In the early 1980s, an outbreak in the United States of a disease with the identical symptoms of ME was reported to the CDC. With little input from the physicians who first described the disease, a small group of scientists, doctors and psychiatrists renamed the disease from the earlier term, chronic Epstein-Barr virus, to simply “Chronic Fatigue Syndrome” (9). By emphasizing fatigue as a symptom, which is known to be associated with many chronic conditions, those with “CFS” quickly became confused with others who were simply “tired” or “burned out” from overwork. Unfortunately for those who were truly ill, and not merely tired, this misunderstanding has prejudiced scientists and doctors before they ever examined a patient with “CFS.”

Journey Through A Medical Wilderness
Our odyssey began in 1989, when my daughter, Andrea, became ill with a mononucleosis-like illness and then failed to return to normal health After many months of continuous relapsing and remitting flu-like symptoms, she was referred to a major medical institution for evaluation. She was given a cursory check up, then provided with a psychological explanation for her infectious symptoms of sore throat, severe head and nerve pain, swollen lymph glands, night sweats, tachycardia, and muscle aching fatigue. Even to a non-scientist that answer seemed ridiculous. The consulting physicians could offer no explanation for what was clearly a biological phenomenon.

I returned home with Andrea, determined to find a doctor who knew something about the outbreak of a disease that had occurred at Lake Tahoe, a favorite summer destination frequented by our family. A physician and next door neighbor, Reggie Davis, who had known Andrea as a healthy child and saw her frequently during her illness, was convinced that her symptoms were like those of individuals from that outbreak. He suggested that we see Raymond Scott, an internist in Reno, even though Andrea was only twelve. Before allowing her to see the doctor, I scheduled an interview with him to be sure he knew something about the disease: I was not going to allow her to be told that her symptoms were not real, as did the doctor who told her that she “most likely hated her parents, her friends, and her school.” Through it all, other physicians confirmed what I knew––that my daughter was ill with a very real disease. Fortunately, Dr. Scott had worked with other patients in the Incline Village, Lake Tahoe area and knew more about CFS than any other doctor in Reno. Although the treatments he offered provided only symptomatic relief, her life improved under his compassionate care. She continued this modest improvement until she decided to enroll at the University of Nevada–Reno. The admission policy required the measles, mumps, and rubella (MMR) vaccination prior to starting classes. Within five days of the MMR vaccination, Andrea had a severe relapse and never regained her previous level of health.

Reflections

As her health continued to deteriorate, Dr. Scott became more concerned. Soon we were on our way to another major medical institution in California, where rounds of tests and several physicians later, we ended the visit with a referral to another hospital’s pain clinic where she was told she should fill out a questionnaire everyday, then learn to live with her pain. Just eighteen years old, Andrea was facing a lifetime of pain that was so severe she required the use of a transcutaneous electrical nerve stimulation unit and injections to make it through the day.

Only after a visit to a local gastroenterologist, one year later, did we find that much of her pain arose from a diseased gallbladder. Within six months of her gallbladder surgery, she also had to have her appendix removed. We began to worry that a vital organ might soon be affected, so we followed her doctor’s advice and sought out internist Daniel Peterson of Incline Village. Months later, Andrea was accepted into his practice

Dr. Peterson has a passion for his work and his patients. He is one of a small number of well-respected CFS physicians and was one of two doctors who first alerted the Centers for Disease Control to a possible outbreak of a new disease, then dubbed chronic Epstein-Barr virus (EBV) (2). Dr. Peterson knew that something was making his patients sick and keeping them from getting well again. The CDC’s quick reply left Peterson with the impression that the CDC didn’t know what the cause was and that it did not think it warranted more attention. Without serious government-backed follow-up to validate those initial and unfortunate faulty conclusions, medical scientists were dissuaded from researching the cause of the new disease, while many more around the world became ill.

Patients who had what was now known as ME/CFS were left with modest victories to cheer and little medical hope. In 1993, Nevada became one of the first states to request that the President and Congress increase funding for research into CFS4. In addition, the Nevada legislature agreed to include the drug, Ampligen, which acts to stimulate the body’s antiviral defenses, in modest recovery models for Phase III trials. Treadmill VO2max (i.e., the volume of oxygen utilized during exercise of maximum exertion) was used as a guide to evaluate patient disability and response to treatment. When Andrea turned twenty-one, she enrolled in the phase III drug trial. Twice a week she was given an intravenous (iv) infusion that at first caused her to experience a worsening of her symptoms. Other days, she spent hours receiving nutrient iv fluids that supported her health. Finally, after one year of treatment, she began to improve with the drug and continued to take it, off and on, for eight years. Blood tests, developed in a laboratory in Belgium, helped determine some of the unique traits found in many CFS patients. After the bombing of the World Trade Center, however, transporting blood overseas was no longer an option. We and a few other patient advocates were approached by one of the owners of the Belgium lab and asked to support the establishment of a US lab that would perform the same tests. Because most of the American patients lacked the insurance to pay for the tests, my husband, Harvey, and I agreed to help and soon supported the lab in its entirety. We felt supporting this lab was critical to the ongoing work in developing and testing therapies for patients with CFS. As a result of supporting the lab, valuable RNase L studies and natural killer (NK) cell work were able to continue, which eventually led to the hypothesis that patients with CFS might be infected with xenotropic murine leukemia virus-related virus (XMRV). While taking Ampligen, Andrea improved to 75% of her previous levels of energy and stamina, but despite many of the positive outcomes, she continued to fall ill with opportunistic infections. For unknown reasons, Andrea began to develop reactions to Ampligen, making her too sick to continue. Once off the drug, she began a continuous decline. Today, without treatment she experiences daily seizures, nausea, vomiting, severe allergies, and painful lymph-node swelling. As a result, she requires nearly full-time help to care for herself and her home. Instead of answers and solutions, we were left with hopelessness.

CFS: Challenges To Overcome

The difference between the actual effects of this disease and that which is portrayed in the popular media could not be greater. The current CDC definition states that a patient must satisfy two criteria:

1. Have severe chronic fatigue of six months or longer duration, with other known medical conditions excluded by clinical diagnosis; and

2. Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than twenty-four hours.

The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue. The CDC then recommends a series of common blood tests, but goes on to predict that:

“More than 90% of patients presenting with severe fatigue will test at normal levels for the series of laboratory tests listed above. Assuming that there is nothing in the physical examination or in the personal history of the patient that suggests a clear direction to the doctor, no further laboratory testing is recommended.”

With what other disease could government health officials suggest waiting six months for a diagnosis, using tests that will only tell you what it is not, and leave you with no answers as to what it is or how to treat it? The CDC concludes that because not every CFS patient has the same abnormalities in their immune systems or brain scans, further evaluation is not necessary. Thus, scientific answers become even harder to obtain.

Perhaps what is missing most from the public’s awareness is the description of the most severely ill patients, like Andrea, who, at times, was so ill and weak that she was unable to feed herself or walk unaided. As these patients’ immune systems weaken and various chronic infections take hold, they live their lives between doctor’s offices and their homes physically and emotionally isolated from their families, friends, and communities. Many go on to develop life-threatening complications. In a retrospective analysis, Leonard Jason found that those diagnosed with ME/CFS died of heart disease, cancer, or suicide at ages approximately twenty-five years younger than the normal population. Only detailed epidemiological studies will reveal the true complications of long term disease and mortality resulting from the complications of this disease.

The problems that patients experience when dealing with the healthcare system can be as difficult as the disease itself. Most doctors have difficulty diagnosing ME/CFS and when they do, are at a loss as to what to do for their patients. The lack of medical consensus is so great that most doctors disagree on the best treatment strategies or what, if any, biological treatments to consider. Doctors and patients are left to their own devices, experimenting with drug treatments that are unproven, toxic, or both. Scientific and educational information surrounding ME/CFS is conflicting and often consists of anecdotal observations from physicians. Additionally, many patients are told they suffer from “faulty thinking” about the illness and are then prescribed cognitive behavioral therapy and graded exercise therapy.

More Than A Foundation

It was evident to me, after working with another research foundation to study CFS, that engaging various scientists to do related research projects was only one part of the solution to the much bigger issues surrounding ME/CFS. This initial research program was narrowly focused on one virus and relied on individual researchers to apply for grants. Much like the extramural grants of the NIH, these projects are scattered among different unrelated researchers and not organized in a comprehensive and coordinated manner.

One thing that I admired about the foundation’s director was her ability to access researchers to do the work that she felt might reveal new information. After reading about the XMRV finding in prostate cancer, I tried to contact the group of researchers at UCSF that had made the extraordinary new discovery. I wanted to pay them to test CFS patient samples using their viral-chip technology. After several attempts, I gave up that effort and instead began to develop another plan of action. That plan was to create a research program within the structure of a medical research center.

Many advocacy organizations had expressed an interest in government support of Centers of Excellence for the treatment of patients with ME/CFS. In fact, to address the issues of CFS, a bench-to-bedside approach was needed, requiring nothing less than an expert institution, which would combine translational research with patient diagnostics, treatments, and medical training for new doctors. When it became apparent that no one else was willing to create such a center, with the strong encouragement of my husband, family, friends, and political leaders.

Reflections

I agreed to act. With a promise from medical doctors to support our efforts, I committed my time and my family’s resources to create and build such an institute. In early 2005, Dr. Peterson and I began working to describe this institute’s future clinical practice. Meanwhile, my husband discussed with John Lilley, then president of the University of Nevada–Reno, the School of Medicine’s desire for a new medical research building. Our Governor and good friend, Kenny Guinn, agreed to place this project in his state budget. Legislative leaders who understood the potential benefits to both patients and future medical education in this state also began to offer their support. This new research facility was to house three significant interest groups: researchers from the University of Nevada’s Medical School; the Nevada Cancer Institute; and the Center for Neuroimmune Disease (now called the WPI). That winter, I gathered scientific information for a presentation to the 2005 state legislature, arguing the need for such a medical center. University representatives and Nevada Cancer Institute scientists did the same. Passionate pleas were made by several patient advocates in addition to our testimony. By the end of the legislative session, ten million dollars has been allocated to support a new research and medical office building5 (Figure 2). The main portion of the building was built from bond money which was based on the indirect costs of the researchers’ grants. My husband and I committed to give or raise an additional $5 million towards WPI’s portion of the building, and soon the construction began, bringing reality to a dream.

The Real Work Begins

Judy Mikovits and I met at an HHV-6 Foundation conference in the spring of 2006. It was at that conference that Dr. Peterson presented patient data describing many longstanding CFS patients who had developed rare lymphomas. Dr. Mikovits was intrigued and, as a seasoned scientist with experiences in retrovirology, recognized a potential for discovering a new disease causing pathogen. Shortly thereafter, I asked Dr. Mikovits to serve as the Institute’s full-time Research Director. She immediately planned a comprehensive research program to answer questions that would support the development of diagnostics to help define those who had this illness. She began by building a repository of patient samples and organizing her studies to generate sufficient data to justify an NIH grant, which was submitted in June, 2007 and finally funded in October, 2009.

Having the support of University leadership––President Milton Glick and Ole Theinhaus, Dean of the Medical School––was also critical to our success. Experienced scientists such as Steven St. Jeor, a CMV researcher; Greg Pari, an expert in Kaposi’s sarcoma-associated herpesvirus (KSHV); and Ian Buxton, a pharmacologist, offered their assistance. Soon after moving to the University, we organized a small conference as a means to formally introduce ourselves. Researchers from the University, the National Cancer Institute, and the WPI came together with ME/CFS physicians, to discuss their areas of expertise. The following year Dr. Mikovits led the first meeting of the Institute’s new scientific advisory board. Today, the WPI Scientific Advisory Board engages scientists with expertise in cancer, infectious disease, autoimmune diseases, immunology, and virology.

WPI has had to use a combination of funding mechanisms to pay for the many different activities neccessary for the creation of a working institute. Like many medical research non-profits, WPI must rely on the talents of its researchers to receive grant support and the ability of its administrators to raise funds from the larger community. When a disease is not well understood and often maligned, it is an even more daunting task. For example, it took WPI three years to receive NIH funding for reasons unrelated to the quality of the proposal.

Donations to the Institute come in many forms. WPI has a yearly gala dinner which raises hundreds of thousands of dollars. We ask private foundations, companies, and individuals for their help in a variety of ways. We have also used yearend gift appeals and a new Facebook Cause page to raise money and awareness. The WPI Web site has been a source of donations, as well. The urgent need for a continuous source of income to support the clinical work of the Institute is now our greatest priority. Generous patients, hopeful for answers, make up a significant part of the funding in this disease. They must choose between several organizations who claim to be doing important research work. It is difficult for most laymen to decipher the kind of science they are funding or whether or not the scientists are qualified to do the work. Thus, private donations which are very competitive can be spent on research that does not provide significant results. Educating the public about the importance of our organization’s own research capabilities is time consuming and requires a full time effort, but is extremely necessary if one is to gain public support.

The Intramural NCI Program:
The Value Of Basic Research

The selection of Dr. Mikovits as the research director of the WPI was fortuitous in that she had worked for twenty years in the Intramural Program for the NCI as research technician, graduate student, postdoctoral fellow and finally as head of the NCI contractor’s lab of Antiviral Drug Mechanisms. The NCI’s tumor virus program of the late 1970s supported the identification of retroviral oncogenes in human tissue and of the tumor-causing human retrovirus, human T cell leukemialymphoma virus type I (HTLV-I) by Bernie Poiesz and Frank Ruscetti, in the laboratory of Bob Gallo. By 1984, NCI investigators were co-discoverers of a new retrovirus, HIV-1, which is the causative agent of AIDS. It was natural for Dr. Mikovits to enlist the help of her former NCI colleagues, Frank and Sandy Ruscetti, Mike Dean and Rachel Bagni, to look for an infectious agent. Thus, NCI’s investment in funding basic research in animal and human virology made the discovery process possible. Initially, the discovery process focused on the use of a viruschip assay similar to the one used to discover xenotropic murine leukemia virus-related virus (XMRV) in the tissue of men carrying RNase L mutations who had prostate cancer (4). After two and a half years of trying to make sense of the viral chip data, we narrowed our focus to XMRV, because many CFS patients also suffer from an RNase L defect, and initiated a collaboration with Bob Silverman, a co-discoverer of the virus, of the Cleveland Clinic. All patient material used in this study were subjected to four separate XMRV assays: DNA PCR from peripheral blood cells (PBMC); viral protein expression in PBMC; presence of antibodies in plasma; and the recovery of infectious virus from plasma transmitted to indicator permissive cell lines. After five months of a rigorous review process, the journal Science published our findings (1).

The Aftermath: Still Stuck
In Osler’s Web

By attempting to bring chronic fatigue syndrome (CFS research out of the shadows and squarely onto the nation’s health agenda, we knew that we would be the object of much criticism from both the medical establishment and those individuals invested in other theories of disease causation. Previous experiences had shown that some of these activities would parallel what happened during the early days after the discovery of HIV and AIDS.

CFS was belatedly recognized as a legitimate disease entity by the Centers for Disease Control in 1997 but is still denied recognition as an infectious immune disorder. The HHV6 foundation believes that HHV6 is the sole cause of CFS. A major CFS patient advocacy organization is on record, having concluded that a retrovirus has nothing to do with the pathophysiology of CFS. Much of the opposition outside of the CFS community firmly believes this disease and others that are similar arise from psychiatric disturbances. Within a week of the Science online publication, several scientists publicly announced that they would not be able to replicate the findings, negative findings were reported on blogs, and within a month, three negative papers had been written and submitted about the lack of XMRV in CFS.

Without directed research allocations from a Director of an NIH institute, it can take between three to five years before money can be allocated to study the role of XMRV in disease. Fortunately, Robert Wiltrout, Director of the National Cancer Institute’s Intramural Center for Cancer Research, has already requested that the scientists in the intramural program begin to develop reagents to determine the role of XMRV in the development of cancer and other chronic diseases. The other difficulties surrounding funding of governmental research grants are numerous, including the time it takes for the entire process to be completed. NCI has developed a mechanism to rapidly give new research funding to existing cancer centers. Unfortunately, when a new, non-traditional entity such as the WPI is created, it must often delay work until the funding is already in place. To solve these problems, we have found it beneficial to work with other institutions and experienced investigators who have offered to co-author grants in a mentoring relationship. But we have also learned a valuable lesson: a non-traditional entity may point out a new research direction, but it must be confirmed by traditional engrained mechanisms.

Reflections

Although the challenges have been significant, the personal rewards one receives by helping others through the work of this institute have been tremendous. We meet and talk often with hundreds of individuals who are thankful that the WPI is creating a scientific program of discovery that will improve their lives. They have spent too many years suffering in silence, often opting out of the medical world when they can’t find relief. Scientific efforts to solve the many questions surrounding neuroimmune diseases have brought a renewed interest in the field and hope to millions throughout the world. Below are just two of thousands of messages sent to our offices. “Canada cheered when we heard the news.” Another patient wrote, “I do not have words to thank you for the work you have done. It has now been 30 years since I fell ill and I truly never thought I would see the day this terrible knot was untied.” Therein lies the motivation, despite all obstacles, to continue this vital mission.

References
1. Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, et al. (2009) Detection of an infectious retrovirus, XMRV, in blood cells of patients with Chronic Fatigue Syndrome. Science 326:585-589.
2. Holmes GP, Kaplan JE, Stewart JA, Hunt B, Pinsky PF, and Schonberger LB (1987) A cluster of patients with a chronic mononucleosis-like syndrome. JAMA 257:2297–2302.
3. Jason LA, Corradi K, Gress S, Williams S, and Torres-Harding S (2006) Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 27:615–626.
4. Urisman A, Molinaro RJ, Fischer N, Plummer SJ, Casey G, Klein EA, Malathi K, Magi-Galluzzi C, Tubbs RR, Ganem D, et al. (2006) Identification of a novel gammaretrovirus in prostate tumors of patients homozygous for R462Q RNASEL variant. PLoS Pathogens 2:e25.
5. Ramsay AM and O’Sullivan E (1956) Encephalomyelitis simulating poliomyelitis. Lancet 270:761–764.
6. Ramsay AM (1957) Encephalomyelitis simulating poliomyelitis. Public Health 71:98–112. 7. Ramsay AM (1957) Encephalomyelitis in north west London; an endemic infection simulating poliomyelitis and hysteria. Lancet 273:1196–1200.
8. Ramsay AM (1986) Myalgic Encephalomyelitis: A baffling syndrome with a tragic aftermath. M.E. Association Journal 1986, UK.
9. Jason LA, Najar N, Porter N, and Reh C (2009) Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case definition. J. Disability Policy Studies 20:93–100.

Sunday, May 30, 2010

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?

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