March 7, 2017 - updated Our very dear friend, long-time Myalgic Encephalomyelitis (ME) advocate and sufferer Maryann Spurgin, has been facing a very grave financial crisis. Maryann has been a voice in the ME community for decades. In spite of USA and UK government policy of neglect and crushing institutional bias against ME patients, Maryann has always painstakingly documented the extensive biological medical explanations for ME, elucidated the pathophysiology by showcasing publications on it and adding her own interpretations and theories, emphasized the importance of case definition, and unyieldingly refused to promote nomenclature coined by government oppressors. Maryann has contributed mightily to science and political advocacy. Such focus is not a majority action; it is an act of bravery and of standing out and often standing alone, and while we all know this intuitively, few can so brazenly and shamelessly speak to take on the establishment. Maryann was one of the first to take down the biopyschosocial model of ME in a review of Marc Demitrack's book that eviscerated the Wessely school. (Links to her many contributions are listed below.) This fundraiser was initially posted in early March, 2016, when Maryann faced financial ruin that would have led to terminal consequences; she had no other option than to be hospitalised or to call in hospice. The overwhelmingly generous response ($7,000), plus her sale of her jewelry and possessions, allowed Maryann to continue her in-home care for months. An immediate result of this generosity was that in June of 2016, Maryann wrote an influential article to reassess the issue of circulatory impairment and blood volume loss in ME as well as the scope of broader research directions. It was published by ME Advocacy here: http://www.meadvocacy.org/circulatory_impairment Her thesis was distributed widely, reached over 4,000 people, was translated into Dutch and Spanish, and several research teams acted in accordance with some of the suggestions in her proposal for their research from an earlier "work proposal" draft she had sent out in January 2016. She expanded her ideas and theories in her June 2016 piece and listed possible lab tests, why she thinks they are important, and her own novel theories about what role some of the circulatory pathologies play in the disease. Her ideas about the importance of circulatory and blood volume issues in ME have already been vindicated by the recent publication of a paper: Reduced cardiac volumes in chronic fatigue syndrome associate with plasma volume but not length of disease: a cohort study by Julia Newton and Colleagues. http://openheart.bmj.com/content/3/1/e000381.long There have been more recent papers on and a renewed interest in cardiac and blood volume problems in ME since her articles were circulated, a correlation that may or may not be related to exposure to her work. She has continued to work, and recently, in November 2016, she edited a much-neglected article on Dr. Paul Cheney's work written by Carol Sieverling in 2002 that showed, argued for and explained a cardiac marker for disability in ME and attempted a near "theory of everything" on the disease. Maryann edited it for length to make it more accessible so that people would read it. Her edited version of the article, a write up of an interview with Dr. Paul Cheney linking ME to Idiopathic Cardiomyopathy, can be accessed here: https://docs.google.com/document/d/1-72Kb14gKC3qU5Il8DEljeGliGgfpOHpUhW6eBuFw-U/edit?usp=sharing Unfortunately Maryann is once again dangerously close to the dire reality of losing her means of financial support to pay her home carer, without which a drastic decline in her health and hospice will ensue as her only option. The funds on the YouCaring page listed as of July 2, 2016, of $7,000, were spent on her care over the spring and part of summer, and the current listing of $22,300+ was spent on care in the late summer, fall, and December 2016, and in January and February 2017. We thank you so much for your generous donations which brought Maryann to the one-year goal and allowed her to continue to work on her main interest, the medical explanations and pathophysiology of ME, a disease that is in no way medically unexplained. That ME is medically explained is an important point that cannot be emphasized enough given the current political climate, and Maryann is our voice on that front. We urgently want to help her raise more money for her caregiver costs for the coming year in 2017 as she explores work-from-home options and continues to write on ME. If you would prefer to donate via PayPal or another way, please contact her on Facebook for her email or other information: https://m.facebook.com/spurgin2/about?refid=17 WHAT IS MYALGIC ENCEPHALOMYELITIS For those who are unfamiliar with Myalgic Encephalomyelitis, it is a devastating disease that robs people of their health, their profession, their resources, and too often their life. Imagine the sudden onset of a bad viral flu that overnight leaves you unable to get out of bed for weeks, days, even years. You feel the extreme dehydration of a hangover while the flu never ends, and it feels like acid is running through your veins, or ignited gasoline. You feel like you are on fire with a fever, but your temperature is only slightly high and sometimes abnormally low. Light and sound become unbearable and give you seizures and people have to whisper in your presence. In severe cases, even holding a conversation makes your organs fail; you are that sick. Your throat hurts and is red and raw. You have aches and neuropathic pains as though pins and needles were pricking your skin. The pain covers your skin like a cloak of needles and increases when you try to move. Your heart pounds and beats too fast when you move or try to stand up. Savings and family resources are depleted. Yet you don't look sick at all. Descriptions by well-meaning medical personnel in your medical records boggle your mind. They say you have fatigue, but that is not what you experience at all. No, not at all. Many die at a young age, and heart and other organ failure is a leading cause of death, even in the young. This is Myalgic Encephalomyelitis. A UNIQUE, VIVACIOUS, ICONOCLASTIC PRESENCE WE CAN'T AFFORD TO LOSE While ME is often thought of as draining the energy straight out of a person, you would never know it from knowing Maryann. She has a lively personal presence and sense of irony and humor that is the absolute antithesis of her own physical health. An entertainer at heart for whom the show must go on, she has always been dead silent and stoic about her own personal story. Many therefore may not have realised how sick she has been, based on her vivacious personality, her delightfully intelligent essays, her powerful writings on science and politics, or the events in her life -- from getting a PhD in philosophy and teaching unsuspecting students about Socrates and Hume to publishing in the Nation -- all accomplished while being ill. She has many interests. Her will to persevere against insurmountable obstacles led her physician to compare her case to that of author Laura Hillenbrand, referring to Maryann as "unbroken." Yet after three decades of being quite resourceful, Maryann has experienced financial ruin due to the exorbitant expenses of catastrophic illness and the recent costs of home care. Maryann fell ill on March 2, 1982, at 10:00pm, in her second year of graduate school as a doctoral student in philosophy. Maryann was athletic and a high achiever before she fell ill with ME. She rode and owned show horses, practiced ballet, and was on the high school swim team. She was a water safety instructor. She lived abroad for many years and knows four languages. Maryann continued to work teaching philosophy part time for a few years after becoming sick with ME. Much later she developed cardiac complications and in recent years she has been considerably worse. She spent many years of her retirement studying philosophy of science and classics and ancient history. When Maryann became too sick to work teaching philosophy, she worked as a writer. She focused on studying science and has been a strong voice for others with ME disease. Maryann founded the ME Society of America - the very first in the USA to adopt the name of Ramsay ME. Her purpose was to give patients access to scientific literature on the pathophysiology of ME to which they could refer their physicians, keeping her sense of responsibility to others at the forefront of her activities. Her website provides links to published articles by researchers and clinicians demonstrating the biological reality of the severity of ME. Maryann's efforts in collating biomedical research have been a wonderful treasure to many sufferers, especially the young, their carers and their physicians. Maryann has testified before federal agencies. Recently, she wrote a speech that was delivered by fellow advocate Charlotte von Salis at the Institute of Medicine redefinition meeting for ME in 2013. In 2016, she produced the aforementioned document on circulatory impairment in ME, and edited the important article on a cardiac marker for disability in ME. Maryanns friends know her to be a person with a knife-edge mind, a quick wit, a strong sense of irony and a will of steel. She has persevered against unbeatable odds and countless life-threatening medical problems for the last 18 of the 34 years she has lived with ME. She attributes much of her successes and survival to open mindedness about treatments and sheer luck. Maryann is a deeply interesting person, classically educated yet with an ability to appreciate the most varied works of art, from binge-worthy TV series to Bach, Greek tragedy and Thomas Mann, from intellectual pursuits in science, classics and philosophy to pop fiction and rock music. A rare iconoclast who challenges orthodoxy, no one is immune to her incessant questioning. Maryann has always been unimpressed by credentials and insistent on logical explanation. In a field neglected and ostracized by institutional medicine there will always be some danger from those who would exploit credulity and desperation. Others, such as CDC, have used an aura of authority to shield their fallacious arguments. Maryann has always used her voice against this. Those of us who know her would enthusiastically endorse this description - she is all of those things and much more. But, as weve seen happen to so many wonderful people, the physical and financial costs of ME have been enormous. In more recent years, Maryann has been quite ill but has remained stable in her home, yet she has had to pay for considerable homecare costs out of pocket. She depleted her savings from when she was working and substantial inheritances from her parents in the process of paying for her home care. She is at the end of her finances and has run out of money to pay her carers. Due to co-occurring complications (see below), without home care and other specialised necessities, Maryann is faced with terminal health repercussions. Despite combating untold difficulties and end-stage complications, and with her determination to carry on with a stiff upper lip by plowing through the full-time job of keeping a caregiver staff going on her own, Maryann has continued to try to work from home, and she was initially resistant to the idea of a fundraising appeal. Among other things, in January 2016 she wrote and sent to medical schools and to private research teams a job proposal to consult with researchers to study the pathophysiology of circulatory problems in ME that were first described by Dr. A Melvin Ramsay in the 1950's, but on which there has been considerable published research since. Although she was not hired, her revival of these issues has been influential. So initially, talking Maryann into a fundraising appeal held the challenge of convincing Socrates to escaping to safe exile from Athens instead of drinking the deadly Hemlock. Maryann allowed us to make this appeal in March 2016 at the last moment, when there was about a week left. The donations came in and were an absolute life saver, and she and we are very grateful for your extreme generosity. We are making this appeal again because her financial situation is once again reaching a grave critical mass. No amount of donation is too small, and if you are unable to donate, please share this fundraiser with your friends, family, and in your local communities and on various social media where possible and help us in our effort to raise money for her to continue to pay for her caregivers. If Maryann cannot continue to pay her carers, she will be forced to forego her means of survival -- with an immediate, drastic decline in her health and hospice as her only option. Her survival is hanging in the balance. This is simply a matter of fact. Maryann has multiple health complications, including severe allergies, with anaphylaxis to many foods, and cardiocirculatory morbidities. Because of this, she requires home care to help with complicated meal preparation and water consumption due also to chronic dehydration. She must maintain an extraordinarily high protein and caloric intake despite that she is very thin, and a strict food/water regimen in order to survive with a high water intake. As with many who have life-threatening food allergies, all of Maryanns food has to be cooked in her own home and from scratch to avoid allergic reactions. Unable to manage it herself, she manages a staff. Due to depletion of financial resources from paying her carers and medical expenses over the last six years, and recently, in the last year, having used the donations plus sale of her jewelry, paintings, furniture and other items to pay these expenses, Maryann is again facing the stark reality of being out of money to pay her home day carer. Her weak heart, light/sound sensitivity, food allergies, and risk of infection -- with allergies to antibiotics, a complication that would render an infection untreatable -- make institutional care completely prohibitive. Should she be forced out of her home, the outlook for Maryann is grim. The risk of death from cardiac events, anaphylaxis and/or untreatable infection is too great. As her physician wrote in a letter to the home-care program last October, she would suffer a lethal relapse of her disease if she had to move, be placed in a hospital, or forego in-home help. Those of us who know Maryann know her to be an independent thinker and quite resourceful. And yet, she is facing this very dire reality. She doesnt want to die, and we most fervently don't want her to. We are asking you for whatever help you can give, so that this very highly regarded and well-liked human being who we call our friend can continue to live, fund her home care and medical costs. Please help us avoid the loss of this dynamic, courageous, and witty individual. Maryann has used much of her time and energy to be an advocate for those with severe ME, especially children and the young. Her goal is to continue writing, with a special interest in the science of ME, using her unique voice collating and tying together in a coherent thesis some of the biological medical explanations of the pathophysiology of this devastating and killer disease, and challenging and questioning researchers and often enlightening them as she has done in the past. With your help, her important voice on these neglected issues can continue to be heard. The current amount of over $22,300+ has been spent on her care for a year. She continues to have to pay for care in her home to survive. Please share widely among friends, family, and locally, and on twitter and other media to which you belong. Thank you! ~ from John Duncan, Khaly Castle, Sarah-Louise Jordan, Michael Allen, PhD, Liz Willow, Jeff Reznik, Barnaby Eaton-Jones, Katie Lloyd, and many other friends. *** PS Thanks to your donations and help Maryann has made it for an entire year. Let's meet that challenge again! LINKS TO MARYANN'S CONTRIBUTIONS. (and resources she recommends on Myalgic Encephalomyelitis) ** Maryanns (now archived) website can be found here: https://web.archive.org/web/20140401062754/http://www.cfids-cab.org/MESA/ **Link to her blog "Circulatory Impairment in Myalgic Encephalomyelitis: A Preliminary Thesis" for ME Advocacy here: http://www.meadvocacy.org/circulatory_impairment ** Her 2013 speech at the IOM can be found here: IOM Statement from Dr. Maryann Spurgin, Myalgic Encephalomyelitis Society of America: http://paradigmchange.me/wp/iom-statement-from-maryann-spurgin-myalgic-encephalomyelitis-society-of-america/ ** IOM Speech on YouTube is here: https://youtu.be/huX1OwCcvCI ** Google document of her consulting/work proposal on the multi-faceted circulatory problems can be found here: Circulatory Impairment in Myalgic Encephalomyelitis: A Work Proposal: https://docs.google.com/document/d/1y_SoLHW8NaxBrI8bmBiY-ehBZfd3Ji7yttV50bG5qRY/edit?usp=sharing ** Maryann's take down / evisceration of proponents of the psychogenic hypothesis in her review of a book by Mark Demitrack on ME Advocacy: http://www.meadvocacy.org/a_blast_from_the_past_a_review_by_maryann_spurgin_ph_d **Google Drive of the PDF's on her website is here: MESA PDFs https://drive.google.com/folderview?id=0BwdP8I0lL6RaaDBpM3NjOUwwc0k&usp=sharing ** Maryann's edit of Carol Sieverling's writeup of a Dr. Paul Cheney talk linking ME to Idiopathic Cardiomyopathy: https://docs.google.com/document/d/1-72Kb14gKC3qU5Il8DEljeGliGgfpOHpUhW6eBuFw-U/edit?usp=sharing Other recommended links on ME regarding medical explanations and pathophysiology: The late Jodi Bassett's website, "The Hummingbirds' Foundation for ME." This is one of the best websites on the internet, with excellent information on caring for ME patients, pathophysiology, and more: www.hfme.org Caring For The M.E. Patient, by Jodi Bassett ** The Heart of the Matter by Carol Sieverling. This is an interview with Dr. Paul Cheney regarding his work on diastolic cardiomyopathy: http://www.prohealth.com/library/showArticle.cfm?libid=11520 ** NAME (National Alliance ME) website: http://www.name-us.org/ResearchPages/ResCirculatory.htm ** Youtube talk by Dr. Cheney on diastolic cardiomyopathy: https://youtu.be/8x2yJaiB_sI ** Link to Mind the Abyss, an artfully crafted, beautifully scored video on the experience of ME: https://youtu.be/GyxUVkfZ1Hk ** Robert Naviaux's 2016 ME patient Metabolome Study: Robert Naviaux Metabolome Study http://cfspatientadvocate.blogspot.com/2016/08/robert-naviaux-metabolome-study-in-mecfs_29.html?m=1 ** Maryann's edit of Carol Sieverling's writeup of a Dr. Paul Cheney talk linking ME to Idiopathic Cardiomyopathy: https://docs.google.com/document/d/1-72Kb14gKC3qU5Il8DEljeGliGgfpOHpUhW6eBuFw-U/edit?usp=sharing *********#########*********** Additional biographical information for those who want to know more: https://docs.google.com/document/d/1673XnqoD8JmmcX30ZDnk7y5Z4wvOOn2DttafLRcOLyQ/edit?usp=sharing We ask that you help, even by sharing this document.