Thursday, January 27, 2011

Invest in ME

It is worth reading the mission statement for Invest in ME.

(Invest in ME was started by Pia and Richard Simpson, parents of two daughters stricken with ME. They learned everything the hard way, through experience. With the combination of hard work and a number of good friends, they run the very best conference in the world on research in ME/CFS. Given their limited means it is unfathomable how they actually do this. Importantly, Invest in ME is also heavily involved in the independent testing for XMRV in the UK. )

"Invest in ME was set up with the objectives of making a change in how ME is perceived and treated in the press, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts in order to raise funding for biomedical research - education, publicising and lobbying. Invest in ME aims to provide the coordination of events and activities in these areas. This will provide the focus and funding to allow biomedical research to be carried out.

Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness.

We believe that the seriousness of the situation regarding ME makes it necessary for governments to provide "ring-fenced" funding for bio-medical research into ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments.

We believe governments should standardise on usage of the Canadian Criteria for diagnosis, so that there is an agreed basis (noting that evolutionary improvement would be welcomed).

We believe government need to not only endorse and adopt, but officially promote the World Health Organisation classification of ME as a neurological illness, as defined by ICD-10-G93.3, separate from the psychological illnesses classified under ICD-10-F48, in order to provide the distinction of the neurological disease.

We believe that governments should provide a national strategy of biomedical research into ME to produce treatments and cures for this illness."

Monday, January 24, 2011

InvestinME conference speakers - May 20th

The Invest in ME conference has just announced the speakers for their May 20, 2011 conference in London. The speakers are:

David Bell
Annette Whittemore
Judy Mikovits
Kenny de Meirleir
Jose Montoya
John Chia
Professor Olav Mella and/or Dr. Oystein Fluge
There will be additional speakers, to be announced later.

InvestinME is run by Pia and Richard Simpson, along with other visionaries. This is their 6th conference, and each year they focus tighter in on research and treatment into ME/CFS. The conference is compressed into one long day of presentations. Presenters have various opportunities on the surrounding days to have interaction and to exchange ideas. As they say, "shit happens" here. The Patient Advocate has seen it first hand. Various relationships between clinicians and researchers have been forged at this conference. A large amount of information is disseminated worldwide through DVDs of the lectures.

The sponsors of this conference make a conscious decision each year to focus attention on the research subjects that they deem to be the most important. Recently, in the past few years, their choices have attained "a feeling of inevitability". This, no doubt, is linked to the October 2009 Science paper. No one knows where this is ultimately going, but these sponsors are going to push things along and push hard.

InvestinME does not seem to have a larger "ME/CFS industry" to please. This stands in sharp constrast to the IACFS conference, which has the "sink trap" approach to programming. Everything is on the table - hence nothing is on the table. The Patient Advocate has suggested to the fellow who runs the IACFS that he "take a page" from InvestinME, but he is not interested.

The InvestinME conference is a hard-hitting, intense day of lectures. Someday this, or something similar, will occur every three or six months. The August conference at the Whittemore Peterson Institute in Reno was a good start is having more exchange. We saw the effect of this on the recent lyme conference, where various ME/CFS clinicians made presentations.

The InvestinME sponsors labor long and hard to bring their annual conference to realization and theirs is a devotion of love. Their effort is wildly understaffed and underfunded. If a reader is looking for a place to give money, please consider this organization. They are the best. It is ironic that this focussed event takes place in the UK, a back-water for scientific research and treatment into this nasty and debilitating illness.

From the PA's perspective, the InvestinME conference is linked temperamentally with the Whittemore Peterson Institute. Both these organizations, in spite of their different qualities, spring from patient/advocate fueled, research-driven motivations. Neither of these organizations have a desire to be permanently ensconced in this problem.. They want to solve the illness and go back to their lives.

The WPI's Judy Mikovits and Annette Whittemore will be back this year, for the third year in a row. Joining them will be researcher/clinicians of the first order: David Bell, Jose Montoya, Kenny de Meirleir, and John Chia. This will be Dr. Chia's fourth consecutive year at this conference. Hopefully his son Andrew will be able to attend this year. The Patient Advocate looks forward to hearing of Dr. Chia's continuing research into enteroviruses, and his take on recent developments in XMRV research. Dr. Mella, and/or Dr. Fluge will be presenting information on the rituximab trial that they are currently running in Norway. Rituximab is a promising treatment for a subset of ME/CFS.

Those is attendance are apt to hear the latest ideas of testing for and research into XMRV - as well as various treatment possibilities. de Meirleir certainly will present his experience of treatment protocols with GcMAF, artusenate and Nexavir. Perhaps there will be discussion of peptide t or stem cells? Dr. Montoya undoubtedly will present his work on a diagnostic and tracking cytokine panels, as well as other significant work. Missing at this point is the input of stem cell treatment represented best by Paul Cheney and Neil Riordan. Dr. Cheney gave a talk at this conference last year. Perhaps Ila Singh will be added, or Professor Jill Belch and her colleagues from the University of Dundee? Whatever happens, the Patient Advocate knows the conference will represent the most progressive and dogged approach to cracking this illness.

Thursday, January 20, 2011

Paula Carnes report of Mikovits talk

Adding to the previous report of Lannie is this report by Paula Carnes, which adds another important perspective to this ongoing research. We are all indebted to these remarkable patients for their reporting. Collectively, we, the reader, get a very good sense of what happened at this meeting. It is not so easy to report of a complex lecture and both these reports are excellent.

Thursday, January 13, 2011

The Sound of a Wild Snail Eating

An Appreciation

A small book with the improbable title The Sound of a Wild Snail Eating was published in the late summer of 2010. It was written by an ME/CFS patient using the pen name Elisabeth Tova Bailey, who, by the nature of her illness, is forced to limit her contact with the outside world.

The Patient Advocate first saw this book in the hands of Dr. Joan Grobstein. As a result I have read it, and given it to various people for the Holidays. Every one of the recipients has expressed admiration for Bailey’s work.

A quote from Rainer Maria Rilke’s Letters to a Young Poet begins Part 1 and sets the tone for the book:

"Try to love the questions themselves as if they were locked rooms or books written in a foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now."

The Sound of a Wild Snail Eating is disarmingly simple but has a great reach. It is a book about observation and its implications - about gathering information from a small, seemingly insignificant source and looking for larger meaning. The work, while appearing to be the modest effort of a severely disabled individual, instead is comprised of powerful feelings and observations, proving that a story or poem or a piece of music does not have to be large to be emotionally profound.

The author of The Sound of a Wild Snail Eating was given a small woodland snail by a friend. At first mystified as to what possible purpose this gift could have, the bedridden author became curious about this other living being who was now a resident of her isolated world. Knowing nothing whatever of the nature of snails, she began, through observation, a "relationship" with the snail. The result is both an investigation of the world of snails and of chronic illness. The author cites various literary sources on snails as well as relying heavily on obscure nineteenth century scientific books on gastropods (stomach feet). She delves into dusty volumes, recording the habits of snails - their eating habits, locomotion, amorousness, strength, disguises and defenses, reproduction, and many other aspects of snail life.

Throughout the book the author's curiosity and thoughtfulness construct larger meanings from the simplest of events - the wonders of a snail in a terrarium. This book is part biography, part memory-play, part journal, part observational record, and part disease description as Bailey interweaves observations of her own physical state with gastropod lore. For a period of months the author describes, with self-deprecating modesty and humor, her snail observations and discoveries. Many of these cloak larger profundities, as the author draws parallels between the tiny habitat of the snail and the larger world. We learn all sorts of particulars about snails and their habits, as well as terms that we have never heard of: schneke, gastropods, radula, dextral, sinistral, pedal mucus, foot drinking, estivation, slime plates. Along the way the reader learns all one needs to know about slime.

While this book is ostensibly about a snail (or snails in general), it also includes finely expressed feelings describing the strange debilitating nature of this nasty illness, ME/CFS. To those unfamiliar with ME/CFS, these insertions of the disease reality might seem jolting, but to the initiated they will read as authentic and familiar . Alternating between elegant and humorous write ups of her observations and research, are the author’s personal revelations of the very nature of this dispiriting, restrictive illness and her methods for living with it. They are among the very best written. Bailey’s description of the process of receiving visitors for someone with ME/CFS, for example, is particularly moving and convincing.

Several other elements of The Sound of a Wild Snail Eating are worth noting:

This erudite book is laced with small, significant quotes from Rilke, Billy Collins, Patricia Highsmith (Strangers on a Train), Edgar Allen Poe, John Donne, Elizabeth Bishop, Emily Dickinson, Florence Nightingale and many others, thus revealing the author as a reader of great breadth and scope.

Bailey’s book is the product of a rigorous writing process: - paring down, compression, editing, and reduction make it a very powerful statement. At the end the author acknowledges the editorial help that she received. The result of this honing is a finely wrought, compressed and readable story line that contains just the essentials

On the back cover, in extremely small print, is this statement: "Author and publisher will donate a portion of the proceeds from the sale of this book to the Whittemore Peterson Institute and to a national conservation organization".

I highly recommend this book, and further recommend that the reader follow the advice of Thomas Mann of what to do when one finishes a good book: “Read it again.” The PA particularly recommends it as a gift for someone who knows little or nothing about ME/CFS, but is receptive and open to learning more. It is a splendid book.

Wednesday, January 5, 2011

Whittemore Peterson Institute statement - January 4, 2011

Turning Today’s Discoveries Into Tomorrow’s Cures

January 4, 2011

XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant

The recent proclamation that “XMRV is not the cause of CFS,” came from an individual who did laboratory experiments to show how PCR experiments can become contaminated. These results have nothing to do with the reality of a disease or the methods used by those who have detected XMRV in the blood and tissue of patients found to be infected. The positive studies, which cannot be explained away by PCR experiments, are those which have used multiple methods to show that XMRV is a live replicating gamma retrovirus in human blood and tissue samples using the gold standard methods of viral isolation and antibody testing, in addition to PCR. Unsupported conclusions, such as the one offered by the Wellcome Trust spokesman, often create sensational headlines but do little to move science forward. Authors of the positive

XMRV studies have been extremely careful not to claim causality, realizing that more scientific research is required to make such a statement. However, one fact still remains clear. Not one of the negative studies changes the results of the scientific research done by Lombardi et al., Lo et al., Urisman et al., and Schlaberg et al.

The WPI-led scientific study, which rigorously ruled out contamination, revealed high associations of gamma retroviruses with physician-diagnosed CFS patients, using four different methods of detection. Recent commentary associated with the negative research papers on XMRV, which used only one testing method, claimed that these studies proved that XMRV was not the cause of human disease. On the contrary, what the authors of the “contamination studies” confirmed is something that most experienced scientists already know; there are risks associated with using PCR if one does not properly control for contamination. They cannot conclude that other research groups had the same problems or that “XMRV is not the cause of CFS”.

Most significantly, the recent Retrovirology publications failed to address the most important pieces of scientific evidence of human infection in the previous XMRV studies, including the fact that XMRV positive patients produce human antibodies to gamma retroviruses, XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

Many researchers realize that the question of gamma retroviruses and human disease cannot and should not be dismissed lightly. Retroviruses integrate into their host’s DNA causing life long infection. Human retroviruses, such as HIV and HTLV-1, are causative for immune deficiencies, neurological disease and cancer. Animal studies involving XMRV demonstrate that the virus moves quickly away from the blood to various organs within the body, such as the spleen, lymph nodes, GI tract, and reproductive organs. This helps to explain why the virus is difficult to detect in blood even as it replicates in the tissues of those infected. Other studies using mouse models of Murine Leukemia Virus infection, a close relative of XMRV, have shown significant tissue involvement soon after infection, resulting in many physical symptoms of disease including cognitive deficits and immune deficiencies, symptoms which are well documented in patients with XMRV associated diseases.

Many anxious patients have asked, “Where do we go from here?” and “Is this the end of XMRV research?” The answer to the second question is an unequivocal “no.” As to the first question, a quick check of the status of ongoing research in various labs confirms that the research groups who have been working on XMRV over the past year are still hard at work developing better assays to check the world’s blood supply for the new retrovirus, finding correlates of immune dysfunction, engaging in animal studies, extending their findings to other groups of patients, and in general, enthusiastically continuing their research. They understand that novel scientific discoveries, which threaten current dogma, will continue to be challenged until the evidence can no longer be denied. For instance, there are still those few who question the fact that HIV is the cause of AIDS. It took Nobel Prize winner, Dr. Barry Marshall, 17 years and three trials in which he infected and then cured himself of H-Pylori associated ulcers, before the medical world would accept the fact that the bacterium causes the disease. Today we are engaged in a new battle to prove that human gamma retroviral infections, such as XMRV, are underlying pathogens in neuro-immune diseases and untold cancers.

It is clear that more research must be done to clarify the role of gamma retroviruses in human disease. However, when a pathogen such as XMRV is found in over 80% of those tested with the same diagnosis, causality is clearly a reasonable hypothesis that begs further scientific and medical research. It is a known fact that important questions of causality can often be answered through well designed clinical trials. For those who have suffered for years from these debilitating diseases, novel drug trials cannot begin soon enough.

WPI’s collaborative research projects are revealing the infectious and inflammatory nature of neuro-immune diseases, providing strong evidence against the use of CBT and exercise therapy as rational “treatments” for those who are ill. Such knowledge underscores the urgent need for much more private and federal funding of biological research to provide diagnostic tests and effective drug therapies for the millions who are ill, stop the spread of infectious retrovirus(es), and end the devastating cycle of disease.


Annette Whittemore


Whittemore Peterson Institute

Tuesday, January 4, 2011

David Tuller, NY Times, on XMRV

David Tuller wrote a very fine journalistic piece on ME/CFS in the NY Times today. The article first appeared online, and later in print in the Science section of the daily paper. Thousands of people will read this article.

An astute reader of this blog points out in a comment that the Patient Advocate has been critical of the coverage of the NY Times regarding the subject of ME/CFS. This is a correct statement- and the PA's criticism was well-founded. Today's article indicates a seismic event in the coverage of this story by the NY Times, and it is a very important positive shift in the balance of power in this "retroviral association" struggle.

The Patient Advocate's son Nicholas asks the essential question. Why did the NY Times decide to publish this now? It is an important question, but it is a difficult one to answer. At a minimum someone, somewhere, at the Times has gotten the idea that there is a story here. Certainly the FDA Blood Advisory panel recommendation must have elevated the NY Times' interest on the subject. Furthermore, it cannot be discounted that the December 20th sandbag operation left a bad taste in many people's mouths. Many people saw, rightfully, that this was an orchestrated effort to unseat the infectious disease association from ME/CFS. The PA surmises that this negative take-out operation was one bridge too far for many serious people. This article indicates a return to a level playing field for the pursuit of the science into this very complex, difficult and life-destroying illness.

The battle over XMRV or other infectious agents is not over, but this article goes a long way towards clarifying the issue. Many of the principles in this drama read this newspaper, for better or worse. The NY Times is the national newspaper, and many influential people get their information from it. Today's article is balanced, and it is fair. It was crafted by David Tuller in such a way as to mark the most negative comments halfway through, and then to proceed to discount or contest those very arguments. This gives legitimacy to the issues at hand - and leave the door wide open for further coverage of this drama.

The larger issue here has been going on for many years: Is ME/CFS an infectious illness? Is there a pathogen or set of pathogens that disrupt the immune system in a profound way, making these patients severely ill? This article goes a long way towards defining the larger shape of the pathogen association. As Dr. Harvey Alter said on December 14, "If it is not XMRV, we have to find out what it is." Dr. John Coffin has said essentially the same thing. The balance has been tipped towards establishing ME/CFS as an infectious disease - and towards finding treatments.

It is important that we not forget how we got here. There were rumors at the March 2009 IACFS conference in Reno that the WPI was onto something big. A few months later, in May 2009, the Patient Advocate remembers "the moment" at the end of the InvestinME conference. In response to a query, Dr. Judy Mikovits leaned forward and said, almost in a whisper, "Yes, we have found a novel virus not previously associated with this illness, and the study will be published in Science magazine". From that very moment, the world of ME/CFS turned.

With October 2009 Science paper, Dr. Mikovits and the Whittemore Peterson Institute established the association of a retrovirus - XMRV - with ME/CFS. Since then the Whittemore Peterson Institute has been under serious attack, and many people have been trying to knock them out. Some of this contention is the way that science operates, but much more of it is political in nature. The political aspect is unseemly, and unusually back-biting and negative - venal really, and laced with hatred. Through all this garbage, Dr. Mikovits and the WPI have held their ground, confident of their research, confident that there is an infectious viral component of this illness, causing profound immune dysfunction. They have gone on to establish immune signatures for this patient population - and the WPI's research continues unabated, although outside funding has not been forthcoming. This is a tactic to strangle this research. This too will be unsuccessful.

These consolidated and continuing attacks on the Whittemore Peterson Institute have taken their toll. These very few scientists and advocates who have advanced this XMRV, infectious disease research have taken a daily beating for over a year now. And yet, they are still standing. These people from this small, independent institute are tough - and they have proven that they can take a beating. Amazingly they are still the same gracious and generous people of several years ago. It is hard to watch this assault, but the PA's admiration for the constancy and persistence of this Institute's efforts has grown and grown - and their survival - the WPI's survival - will give other's hope. We will see more WPI's in the future. This is not 1992, and Mikovits is not in the position of Dr. Elaine DeFreitas. (Dr. DeFreitas was on her own with no way to defend herself.) The effort to demolish the WPI has failed, and, if anything, this NY Times article substantiates this. It is time to move on to more and broader research - and on to treatments.

It is important to recall what has happened in the last fifteen months. Because of the October paper, research into XMRV has sprung up in various places. ME/CFS and XMRV have been in the public eye like no other time in history. It is time to push. A momentum has been building and an inevitability has been settling in. While science is not moving fast enough for patients, researchers are becoming increasingly interested in retroviral association with various neuro-immune illnesses. Other research into ME/CFS has consolidated around the heightening of the XMRV association. For better or worse, ME/CFS has been in the public arena like never before and it will stay there now. All this can be attributed to the Science paper, and this has to be viewed separately from whether the specifics of this paper pan out or not. ME/CFS as an illness has been sprung loose, and this little private institute in Reno, NV smashed the lock.

This article today will help take the pressure off of Dr. Mikovits and the Whittemore Peterson Institute. Today was a good day for ME/CFS research - and a clear vindication of the research of Dr. Judy Mikovits and the Whittemore Peterson Institute. The subject of ME/CFS has been elevated to the highest level of news journalism, and this can only bring more brain power to wrestle with this illness. Neither Dr. Mikovits or the Whittemore Peterson Institute will object to this.

Monday, January 3, 2011

New York Times article - 1/3/2011

The NY Times published a very fine article today online. It was written by David Tuller. The article is balanced and reports the science surrounding the XMRV situation in a broad and neutral fashion. Perhaps the NY Times senses that there is a very real and developing story here? Perhaps it will make it into print in the Science section where thousands of people will read it? This is a very good article and it was great to see it.