Thursday, January 27, 2011
Monday, January 24, 2011
Thursday, January 20, 2011
Wednesday, January 19, 2011
Thursday, January 13, 2011
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
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.
Whittemore Peterson Institute