One of my favorite Christmas activities is to enjoy a really good French meal. I start my indulgence with a hearty serving of escargot, defying my cardiologist.
But this year, I have declared a one-man moratorium on the eating of snails. My gluttony has been impaired for this and other visits to Chez Indulgence by a slim but compelling volume that makes you think differently about that humble creature: the woodland snail.
It is also a book for Christmas: a feel-good book about a sick woman and a lowly creature of the forest floor. You never feel sorry for the writer, even in her distress, and you feel joyful about the snail. You bond with it.
The book is “The Sound of a Wild Snail Eating” by Elisabeth Tova Bailey. It belongs in that category of books that, like tunes, becomes imprinted in your memory. Bailey’s book is not a work of fiction, and it is work of wonder.
Bailey, who used to be an outdoors woman and a professional gardener, was felled nearly 20 years ago by one of the least understood but most debilitating of diseases: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).
“From where I lay, all life was out of reach,” Bailey writes in her book.
Nothing much is known about the disease, which afflicts about 1 million Americans. But there is recent evidence that it may be caused by the retrovirus XMRV.
My own research into CFS and hundreds of e-mails I have received reveal that sufferers have bad years, worse years and years of some improvement. One writer told me, “We are the living dead.” Others thought they had recovered, but fell back into the lonely painful abyss.
In Bailey’s worst year, a visitor put a woodland snail into a pot of violets and presented it to her. It was a whimsical gesture, but it may have saved her life by giving her an interest beyond dreaming of the life that could no longer be hers. Sometimes she was so ill, Bailey reports, that she could not turn over in her bed, so she watched the snail.
Later, she placed it (they are hermaphrodites) in a better home—a terrarium where it could go about its complicated life, which included audibly chewing squares of paper. She got attached to it and learned about its habits; its use of slime to get around; and its ability to fertilize its own eggs and bring forth young—an amazing 118 little snails — in this predator-free space.
As Bailey’s health improved, she began to research snails in general and to study the work of the extraordinary naturalists of the 19th century, mostly British, including Charles Darwin. In the book, Bailey quotes some wonderful observations from this rich period for the natural sciences.
Like Bailey, the 19th-century naturalists depended more on what they saw in the field rather than study in the laboratory. They found, for example, that even hermaphrodites love to make love; and if one snail gets amorous with another, the proceedings are protracted. Who would have thought?
Bailey does not dwell on her disease, but on the snail. In fact, the nature of the disease is not revealed until the epilogue.
The book is not a lament of life’s abounding injustices, nor is it full of humbug about the human spirit. It is an adventurous, fascinating investigation of a snail that comforted inadvertently as it went about its slimy business, habitat attached.
Bailey is a beautiful writer of the simple English sentence and an artful storyteller.
This is a book for Christmas because it makes one feel very good. Merry Christmas to all the snails of the earth – people, too.
Follow
Doesn’t Bailey make you rise above it all? Her story is fascinating; her illness is devastating.
Thank you once again for taking the time for us, for one story of courage and for giving us hope.
Thank you for highlighting this wonderful book and for continuing to make mention of the viral aspect of ME/CFS
Siobhan
xmrv Positve
This book is on the top of my Christmas list. Thank YOU!
I have ME/CFS and have been thinking about getting this book for a while but didn’t know anything about it. After reading your wonderful review I can’t wait to buy it.
Thank you so much for all you are doing to bring much needed awareness about this dreadful disease.
The Sound of a Wild Snail Eating is a beautifully written book. I am fascinated by the story. I love the way Bailey writes about her illness, carefully chosen, flowing words that so accurately describe ME/CFS. I, too have ME/CFS and I know how terribly isolating and destructive this illness can be.
Thank you.
PAT…30 years CFS, XMRV +
Dear Mr. King,
Thank YOU for the excellent review of fellow sufferer, Ms. Bailey, and her quest to vicariously live through the amourous little snail beside her sick bed. Like Ms. Bailey, my life was derailed at the absolute worst time . It was 1987, and i had been working for 3 years on a proposal for Mr. Thomas Perkins, the famous venture captalist, who helped fun Genetech, Hewlett Packard, Apple, Amazon and later Google. My dream was to connect all car lovers of the world in a giant database. my pitch to him was that in the 1990’s, the winners would NOT be people who made a product or provided a service, but the people who could provide quick, accurate, and cost effective information on how to locate the companies that provided the best quality products and services. I could see a giant “information highway’ coming down the pike, and i said that whoever could gather a bunch of bright Stanford University engineers just an hour south of our luxurious hometown of Mill Valley and Belvedere, California and have them write the code full of algorithms necessary to link various relational databases around the world with every piece of data, and photos of every type of car and truck in the world. I believed that these people would be the REAL winners in the new economy. Just 11 years after i collapsed and went from a 7 day a week entrepreneur, to a complete invalid overnight, Two young engineers at Stanford came up with even better algorithms that i even dreamed of and they gave birth to Google. and Mr. John Doerr, one of Mr. Perkin’s top young guns, wrote them a check for $25 million to get their database off the ground. The rest is history. But, for the past 24 years, just Like Ms. Bailey, i am often unable to roll over in bed. Epidemiologists now think that there might be some 20 million of us all over the world. We are vibrant people, living our lives to the fullest, and we catch some kind of flu, and BOOM, some Agent X causes us to Not recover. Who knows if XMRV is that Agent X, But, i do think that something that would cause someone as worldly and knowledgeable as you to write in your column, that you have NEVER received as much email and letters in your entire LIFE about ONE subject as ME/CFS is something to follow up on. I think that this is a testament to how brutal this condition really is. And how our government has utterly failed in EVERY way to isolate the one or more triggers that destroy’s lives overnight. We need to learn how to screen the blood supply from a potential new retrovirus that might be living in 20 million americans at this very moment. This thing could be bigger than HIV. We just don’t know. But for our NIH to isolate the search for this disease in a broom closet at it’s sprawling campus in Bethesda, MD and NOT fund it at all, is a crime against humanity. Our lives have been hit by an F5 tornado that causes complete devastation of a person’s existence, often overnight. There is NOTHING in your life that you can imagine worse than this. your body is fighting against an unseen invader that leaves you nauseous, dizzy, and in excruciating nerve and muscle pain all day, and all night. This invader leaves our bodies looking pale and wan, with blackened circles under our eyes as the only sign that we are NEVER able to get any restful sleep. The agent seems to slip out of our bloodstream and rides along our nerves and muscles, delivering an invisible “Rodney King” style beating to our bodies each and every day. And for some midlevel bureucrats at the NIH to name it “Chronic fatigue syndrome” right smack in the middle of the land of workaholics, is one of the cruelist tricks of all. May those woodland snails floourish and multiply and spread the word about this vicious thief of many lives. Thank YOU for speaking up about this terrible scourge, If i could wave a magic wand and give every US politician my symptoms from today until the new Congress starts next month, this would be JOB #1 on their 2011 calendar. I am sure of it. My one wish for you is that men and women of goodwill NEVER experience what us ME/CFS patients do on a daily basis. And i wish for the NIH and CDC bureucrats who have been asleep at the switch for the past 30 years the worst case of ME/CFS ever recorded. And we can then record their reactions when their families refuse to believe that they are sick, and our medical establishment ignores the pleas of formerly productive men, women and worst of all, young children, who lose their friends, their school life, their careers, their homes, and many die horrible deaths in nursing homes, or die frozen in their homes because they are too sick to work, and pay for heating bills, they become to weak to shop and cook for themselves and the big disability insurance companies use every trick in the book to deny disability payments, and refuse legitimate claims because no single Agent X has yet been discovered. The brave pioneers at the WPI are working with Dr. Frank Ruscetti, who was a co-discoverer of HIV, and he WAS the discoverer of HTLV-1, and now he and his associate, Dr. Judy Mikovits have REPEATEDLY isolated a new retrovirus, XMRV, which MIGHT be the mysterious trigger that begins this catastrophic cascade of misery that has destroyed the lives of millions. Their groundbreaking article in SCIENCE magazine of October 8, 2009, demonstrated beyond the shadow of a doubt that some kind of new retrovirus ( only the third HUMAN retrovirus ever recorded and Dr. Frank Ruscetti was there for all three!) is out there and in the US blood supply. on December 3, 2010, the American Red Cross decided to actively deny all donations of blood for people diagnosed with ME/CFS. (Many of us with slightly milder cases than Ms. Bailey and myself are still undiagnosed) Now, in mid december the FDA advisory panel of their blood working group voted 9 to 4 to DENY blood donations from people with ME/CFS. and Dr. Harvey Alter, the highest ranking official for blood transfusions at the NIH, who won the Lasker prize (the highest prize in Medicine) for isolating Hepatitis “C” from the blood supply said after the FDA meeting when some other retrovirologists were claiming “contamination” in some simple PCR blood tests was the REAL cause of this XMRV hoopla. Dr. Alter, disgusted with such comments said in an impromptu speech at the end of the FDA hearings, “Six months ago, i didn’t know a lot about ME/CFS. But i have learned a LOT in that time. I don’t know yet, if XMRV is the cause, but i DO know that these patients are VERY sick. This disease is real, and we need to keep working to find out what is making them so sick!” There are many studies coming out in 2011, Mr. King, and we urge you to keep your email box open, because some of us will be forwarding the results of these new tests to you ASAP. Because XMRV virus has been isolated in the blood of people with Chronic Lyme disease, children with Autism, women with Fibromyalgia and hundreds of patients with prostate Cancer, breast Cancer, and ME/CFS, suddenly big Pharma is interested. and the CDC and NIH bureaucrast are sleeping less soundly this Holiday Season. Because if it can proven, that an ME/CFS researcher, Dr. Eleaine De Freitas, the former star pupil of famed virus Hunter Hillary Koprowski of the Wistar Institute, who claimed to find pieces of a retrovirus in ME/CFS patients way back in 1991, and had her work shutdown after the CDC could not replicate her work, then Jenny bar the door, the lawsuits could be coming fast and furious against the NIH and the CDC for allowing a NEW, AIDS like virus to spread silently through the US blood supply for more than 2 decades, when ME/CFS estimates in the US went from 10,000 to 40,000 to well over 1 million serious cases and up to 4 million milder cases of this illness and we still don’t know what causes this brutal illness. Only Time will Tell, But no longer will work on finding the cause of ME/CFS proceed at “a snail’s pace”. And it is the job of Journalists like yourself to hold the authorities feet to the fire!
Happy Holidays and May 2011 bring a better year for ALL Men, Women and Children of Good will!
Mr. King,
Thanks for this and other articles you have written regarding ME/CFS. I hope you continue to follow and investigate this important story.
As a physician with ME/CFS, I can tell you that healthcare professionals are not well educated about this illness in large part because it has been viewed, first, with skepticism, and, later, dismissed, by the Centers for Disease Control as a psychological illness. Because I was healthy/ active and developed this illness over a few weeks after what seemed a mild “flu”, my friends/ colleagues/ family accepted it early on as a physical illness and I am fortunate to have their support. As an MD, I knew from the get-go that this was not a psychological illness.
We know from past medical history that illnessess that are poorly understood often get attributed to psychological causes when there is not yet an available objective test. Then it gets revised to a “medical illness” when the technology finally catches up. Think it can’t happen in this 21st century? Well, it’s happening right now.
The National Institutes of Health are holding a special conference on ME/CFS April 7-8 in DC. I hope you will try to attend or report on this conference.
Happy Holidays.
Thank you for this lovely review.
Doesn’t she write beautifully?
Mr. King,
Thank you for continuing to follow up on the story of ME/CFS. I believe that 2011 will be a watershed year, as important studies are released by WPI and by Dr. Singh. My symptoms are mild compared to many, but my daughter has severe symptoms and has been ill since age 12. She is now 32. Twenty years of promise…lost. With help from journalists like yourself, the world will wake up some day and realize the horror that many have lived. I have great hope for answers and treatment in the near future. Please stay on top of this story. Thank-you.
Faith CFS 22 years
So now that the WPI have, using several different techniques, found XMRV in 98 or 99% of their ME patients – how can they deny a “link”? And the WPI have never claimed a causal relationship – in writing – but that firm link indicates this, to anyone of modest intelligence.
Anyone who has read the obligatory tome “Osler’s Web” will know the facts. Dr Paul Cheney, around 1985, took some of his ME patients’ MR scans to an MRI expert, who showed him a set of identical scans – from AIDS patients. (see the videos on YouTube). Maybe they hadn’t sorted out the retroviral origin of AIDS at that time, but the penny will have dropped later. So we then knew a retrovirus was involved.
Then in 1991 the researcher Elaine DeFreitas actually found a retrovirus in her ME patients, even showed electron-micrographs of the virus inside mitochondria where they disrupt the mitochondrial function of producing energy in the cell – hence the weakness or fatigue felt by patients. She couldn’t continue with the research as her funding was promptly withdrawn.
With all the government institutions turning their back on the biomedical cause of M.E., it was left to the “private sector” to fill the deficit. The Whittemore family, with their daughter Andrea an M.E. patient, engaged retrovirology experts including Judy Mikovits and established a private research centre, the Whittemore-Peterson Institute (WPI). Judy already suspected a retrovirus was involved and set out to prove it to the high standards of Science magazine.
The rest is history. History has now progressed beyond the squabbling over theoretical contamination. Several ME patients have started on ART’s (anti-retroviral therapies) and are blogging about their experiences – most are improving but it takes time. The ART drugs are based on those developed for treating AIDS patients – successfully. However XMRV is not the same as HIV and it may be possible to develop special drugs for XMRV which will be more effective – if the drugs companies remove their collective skulls from their colons and get on with the job. With perhaps seventeen million people worldwide affected, this could be very profitable.
Many thanks for continued coverage of CFS and the book “the sound of wild snails eating”
As you know MECFS is extremely political and there are forces out there that want to deny patients the best chances of treatment and cure.
Your work has the potential to make some important changes for millions of people.
Thank you. KAti, sick for 2 years, Canada
Thank you for your review of “Sound of a Wild Snail Eating.”
I loved the book, too. I have been disabled by ME/CFS for 17 years and cling to the hope that help for us is on the way. A book like this beautifully written natural history of the snail provides much needed inspiration for us all. It is greatly appreciated that you continue to write about ME/CFS.
Sally
I received this little book as a Christmas present and am looking forward to reading it – when I am again able to read more than two sentences at a time.
Thank you for your much needed coverage of ME/CFS and I so hope you will continue. WPI has recently indicated that treatments will be available in 2011. I pray for smooth sailing to pave the way for those of us who have suffered incalculable losses to regain some semblance of our former selves.
Thank you so very much for this excellent review of this delicious book. Your assessment of the story makes it impossible to resist.
I am an ME/CFS sufferer. Thank you, from the bottom of my heart, for your continued support in bring our plight and XMRV. We are fighting some big giants these days. You make it such a pleasure to read about a not-so-pleasant state of being.Please keep it up. Please stick with us. We need voices such as yours.
Thank you again,
Pat
XMRV+ (15 years)
Thank you so very much. I gave this book as a gift to a fellow sufferer and she was thrilled, although only able to read one page per day, it was her favorite Christmas gift.
Your coverage of MECFS is more than appreciated!
Linda, sick since 1986
Thank you Dr. King for reviewing this insightful little book-one that offers a rare glimpse into life with ME/CFS-and for your continuing coverage of ME/CFS. You are providing such a valuable service for those of us who suffer from this underfunded and maligned disease. I have had ME/CFS for over 20 years and hope that 2011 will finally bring treatment for and attention to this devastating illness.
Thankyou Mr King for another compassionate article. You are a godsend to those of us all around the world with this dreadful disease. I myself, am in Australia.
Please keep up the excellent work.
p.s. I REALLY must read that book!!
Dear Mr. King,
I am very appreciative of your continued efforts to spotlight ME/CFS, which is an unacknowledged but horrific disease. Elisabeth Tova Bailey’s book sounds thoughtful and well-written. It will be a belated Christmas gift. Thank you for continuing to remember those of us ill with this illness.
Bailey’s plight is all to common for us suffering with ME. thanks for the nice review.