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.

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)

UK conference May 2008

I am a patient advocate for my 34-year-old daughter. I attend CFS conferences and try to learn about this disease. I am not a scientist. Consequently, much of what I hear, I do not understand. However, after a number of years now, I do have a feel and a respect for the complexities of this disease. For those interested, here are my observations of the one-day ME/CFS conference in London May 19, 2008. Having written these notes for my own use, I have no further comment to make on them. More knowledgeable and useful reports will hopefully appear, and there will be a DVD of the presentations at this conference

The conference was chaired by Dr. Malcolm Hooper, a revered UK ME/CFS doctor.

The conference began with a very excellent hour-long lecture by Dr. Leonard Jason from DePaul University in Chicago. He is a psychologist who studies CFS statistics, demographics and terminology. He spoke at the International conference in Ft. Lauderdale and gave the same lecture addressing the importance of precisely defining the CFS population. He also elaborated the various shortcomings of not having done this yet. He spoke of the various weaknesses of the 1994 Fukada definition (a committee decision) - and of the 2005 Canadian definition, which is slightly better. His lecture was both fascinating and depressing, as there are great pressures from different directions to either expand the definition or contract it. As usual in such matters, the bottom line is money.

Dr. Jason makes huge efforts to sort out the patient population. Part of this involves developing apt questions to tease out a meaningful response. For instance a particular question or set of questions will try to measure “the severity of self-reproach” in various overlapping patient populations. If you ask a patient with depression, “If you were well tomorrow, what would you do?” you will not get much of an answer. If you ask this of a CFS patient, you immediately get a long list of things that they would do. The response in the room indicated that most attendees understood exactly what he was saying.

As an example Dr. Jason spoke of the recent CDC definition, which instantaneously expands the former estimated CFS patient population of 400,000 to 4 million. It is a nice trick and many people are happy with this - as it supposedly makes the disease more prevalent and real; and this will supposedly draw more researcher money. Dr. Jason aptly pointed out the flip side of this where under the new definition a “CFS patient” need not have “post-exertional fatigue” or “fatigue of six months duration” and other hallmarks of the disease. The reality is that these new parameters host a great number of patients suffering from other disease states, including depression. After hearing Dr. Jason speak, one would have to worry about the CDC. All this is a little desultory and depressing, as Dr. Jason soldiers on with very impressive arguments to define CFS more accurately and tightly, which will eventually lead to more identifiable subtypes, the subject of this conference.

Next up Jonathan Kerr gave his usual fine low-key and precise lecture. He is usually allotted a half-hour, which I suppose is all that he needs to elaborate his work. He presented his gene expression work in his soft-spoken voice, and there was nothing new here. He and his group have identified seven subtypes, each which has a potential treatment with existing drugs. They are working on a marker (or markers) in order to identify subtypes. No timeline for a marker, or markers, was given. Presumably and eventually, trials with specific existing drugs with subtypes could be done. Kerr did reveal that his application for a trial of Enteracept on a subgroup was turned down by the government, and that this trial is not going to happen. The most poignant moment came at the end of his lecture where he put up a picture of his “group”, the same photo he has shown in the past - six researchers. This group has now dwindled to three - as his funding has been cut, and he gets no funding from the UK government health ministries. Fortunately he is working in collaboration with a group of Americans, who have a deeper appreciation of his work.

Dr. Martin Lerner made a longer presentation on his work sponsored by the A. Martin Lerner Foundation. This was the first time, I believe, that Dr. Lerner has spoken in the UK; and there was the sense that few members of the audience had a clear idea who he was or what he does. Dr. Lerner presented a lecture similar to the one that can be seen on the Internet, with the significant addition of recent long-term data. Dr. Lerner is probably the most experienced doctor in using anti-virals for subsets of CFS in the world. Highlights of the lecture are expressed here. Dr. Lerner has compiled six years of data of 180 patients, including 5000 visits and 45,000 pieces of information.

Dr Lerner has separated the 180 patients into two groups with similar demographics: Group A (138 patients) - CFS Herpes virus illness (EBV, HCMV, and HHV6, in some combination) with no coinfections, and Group B, CFS Herpes virus illness (EBV, HCMV, HHV6 in some combination), with co-infections (Lyme, Babesia, etc). He presented information only on group A. Lerner uses the Fukada definition. Patients in Group A were identified through positive IgM recombinant p18 monoclonal VCA, abnormal Holter monitor assessment and abnormal cardiac wall assessment. More specific details of this screening are publicly available. Specific long-term pharmacokinetic therapy, (Valacyclovir, Valgancyclovir) was administered to each patient. Using his own Energy Index (EI) point score (1-10), Lerner determined the mean score for 138 patients at baseline was 4.5. The mean final EI point score was 6.0. These data indicate that specific long-term pharmacokinetic administration of Valacyclovir/Valgancyclovir provides long-term significant benefit to Group A patients. There was no toxicity to this long-term antiviral therapy. In answer to a question, Dr. Lerner indicated that there were remarkable improvements to heart irregularities.

Dr. Lerner strongly believes that viral subset CFS treatment options exist right now, today. His foundation is working on a DVD training film for physicians. While Dr. Lerner holds various patents on his treatment protocols, with several more pending, he gives every indication of being a dedicated practitioner and researcher who wants to get his information on antiviral treatment to a wider audience.

Dr Chia followed, as he presented his ideas on the causal relationship of enteroviruses and CFS, including his treatment with alpa-interferon and ribavin. This man is a very serious doctor and with his son has made great steps towards identifying a CFS subset. As with Dr. Lerner, it seemed that few in the UK knew of Dr. Chia and his research. Information on his investigations is available on the Internet.

The last major lecture was an incredibly high-powered presentation by the American researcher, Dr. Judy Mikovits. She is the research director of the new Whittemore Peterson Instituteof Neuro-Immune disease in Reno, NV. In a lecture of which I understood next to nothing, she gave every indication that this institute has the funding, the drive and the independence to reveal some important elements of this disease. She also indicated a no-nonsense willingness to cooperate with others world-side in this struggle. I have seen many scientists make presentations, and this gal was amazing. With this presentation, along with the others, there was a clear picture that the Americans were back in the UK doing what they do best.

Additional lectures were given by Dr. Julia Newton, who gave a very clear and useful talk on Autonomic Dysfunction, a distinct subgroup in CFS, by Dr. Irving Spurr, a UK doc with great practical experience, who presented his ideas for treatment of CFS, and by Dr. Jean Munro, who gave case histories of CFS treatment by her group in the UK.

The final set of questions to the entire panel (including the addition of Dr. Tae Park from S. Korea, who had a poster paper on his IVIG treatment), gave some coherence to the topic of the day. At times, it was difficult to believe that these different speakers - with their diverse angles and experiences working with ME/CFS - were actually talking about the same disease. A nice bit of drama was added when Dr. Spurr stated that there was no evidence that anti-virals were effective. At this moment, Dr. Lerner looked a little dispirited. However, Dr. Lerner quickly recovered and reemphasized the positive results of his work; and various others joined him in expressing the belief that there are treatments available at present for distinctive subsets, and that more treatments with existing drugs will come online as subsets are identified.

Additional thoughts:

The important point of this conference to me is that it seems to indicate a turning point in thinking about this disease or set of diseases. People get together in this conference room and hallways and share ideas, and you can sense things are happening. The days are past of just dosing a drug on an experimental basis and seeing what it will do.

Several things are happening at the same time. The mechanisms of certain subsets of CFS are being better understood, an awareness of the necessity of tighter definitions of CFS is being expressed, and the diagnostic tools are becoming better.

In watching Dr. Lerner operate, it is difficult to determine whether he is primarily a practicing physician or a researcher. He seems to be both, and he has the curious habit of not tooting his own horn, at least not in public. Dr. Lerner is a quite fantastic fellow. He indicated that people at the A. Martin Lerner Foundation (privately funded) had diligently assembled this data based on retrospective and current information of 180 of his own patients. I think Dr. Lerner assembled this data to convince others of what he already knows: with the correct diagnostic workup, judiciously and professional administered long-term anti-virals make many people (in this subset) feel a whole lot better.

A few other thoughts: Dr. Lerner spoke of the importance of not exercising until reaching stage 8 on his EI.

Dr. Lerner’s diagnostic slides of EBV in the heart muscle are a little scary, but he had presented this before.

I asked Dr. Lerner about the EBV IgG antibodies as a diagnostic tool and he said that they were “totally useless”. He uses a particular type of IgM antibody test that is commercially available. Also he uses a Holter monitor test for diagnostic purposes. T-wave patterns appear flattened in a meaningful way with CFS patients. There is a third element of his diagnostic scheme involving another heart test. All of this is available by searching the internet for his patents.

Dr. Lerner had another good piece of advice. “Increase what you do when it is easy.”