"What works for one might not work for another." We hear that so much, repeat it ourselves, believe it and accept it as one of the few scientific truths known about this mysterious illness. It is one of the first facts a new patient is presented with by both support group members and medical experts. The truth is just the opposite. If someone has had a definite diagnosis of CFS, CFIDS or ME then by definition other possible causes of the symptoms have been excluded, or identified and treated. What remains is the syndrome - unexplained illness. The good news is there is an explanation: "Chronic Fatigue is a State of Accelerated Oxidative Molecular Injury." ¹ Once you understand the nature of this cellular damage then it follows that what works for one will work for another.

My purposes are to relate my experience of my daughter's treatment, to present this explanation and a few of many credible scientific references that support it, to suggest an alternative treatment, and to urge you to consider it now! I also want to express some strong opinions and to do some ranting and raving and to insult a few people.

My daughter, Katie, had what was considered acute onset in Sept. 1994. She was 15 then. Her condition rapidly deteriorated into the full blown array of symptoms. When she was non-ambulatory and bedridden we had her hospitalized. After about $26,000 of state of the art team approach by allopathic specialists, scans, more exclusionary tests, physical therapy, drugs, psychological therapy and occupational therapy we finally (almost) accepted the "reality" that not enough was known about CFIDS, that more funds and research would be needed and that the best they could do was manage the symptoms with drugs and give psychological therapy to help her learn to live with it. I now believe these conclusions were all wrong!

My wife and I began looking for answers. We joined support groups. She dove into learning how to care for the material, emotional, spiritual and educational needs of a disabled and sick child and how to still allow for a normal childhood environment for our younger son. Meanwhile, I began reading all the Chronicles, Mass Updates, Networks, medical journals, books by many CFIDS authors. I crash studied nutrition, biology, even microbiology, attended research update lectures, watched CFIDS videos, listened to audio tapes, looked for clues in literature from other illnesses. I remember almost running to the mailbox for the next piece of research that would have the big breakthrough. I was sure I would be like the father in the true story "Lorenzo's Oil" who through diligent study and searching the medical literature, developed the treatment to help his kid. I even naively assumed that all the symptoms were being caused by some single invading germ and once identified the cure would be a " magic bullet " drug. All this new learning did was to finally give me enough confidence to take the leap out of the established medical system and to place faith in a doctor who uses an alternative treatment strategy that makes sense.

At some point early on, one book I read "The Canary and Chronic Fatigue" ² seemed to ring true with its scientific explanation of the cause and reversal of fatigue states--whether of the full-blown syndrome or idiopathic (not meeting all CDC criteria). The title comes from the author, Dr. Majid Ali's belief that CFIDS sufferers can be likened to canaries that were used to give advance warning to miners of lethal toxins in the mines. PWCs are people more susceptible to cumulative oxidative cell damage that we all experience and do suffer illnesses from but recover. Give a "canary" and another human the same biological insult, a virus for example. Both get sick, the first recovers the latter regresses to a post-viral syndrome. I wasted a year from this point on in not acting on this intellectual conviction that the author was right on the money. One thing after another waylaid us from pursuing this course: advice against "quackery" from respected individuals in the medical fields, both personally and in the literature, lack of funds for non-insurance covered aspects of holistic treatment, false hopes such as jumping on the neurally mediated hypotension bandwagon (which, by the way, exacerbated her symptoms).

Biomedicine or allopathy are terms used for the system of medical health care that most Americans are familiar with and use. Orthodox or conventional western medicine are also terms used to identify this system. Most insurers cover costs of health care from within this system only. Medical practice of any type outside this system is considered "alternative."

Allopathic physicians without a doubt are invaluable for their expertise and medical knowledge in treating acute illnesses and diseases. They draw on tremendous resources of technology and specialty disciplines to form teamwork approaches to an individual's rescue from ailment or injury (Star Wars Medicine).³ The sad fact ,though, is they have consistently failed miserably with this approach to resolving the chronic syndrome that is CFIDS.

Typically, in the "loop" (the biomedicine system), the primary care physician (PCP) refers the patient to specialists who each does his thing, either excluding or treating the organ or system of his expertise. With most known illnesses, the patient will have found help somewhere in the loop and "Star Wars Medicine" will have chalked up another triumph, all parties including the patient satisfied. When the PCP refers the CFIDS patient through the loop, no culprit is found and the syndrome defiantly remains. All the experts now look like "carpenters" to the PWC (If you're a carpenter with only a hammer everything looks like a nail). They will start hitting at nails, writing prescriptions, then add final injury to the PWC's plight by suggesting somatoform or conversion disorders and then the PCP refers the patient to a psychiatrist. The frustration experienced by PWC and caregiver who stay stuck in the loop too long is not the only negative impact. The greater tragedy is the lost time spent in prolonged misery that could have been targeted to the reversal process. Stop waiting to be believed. Stop waiting for more research to find "agent x"-- the pathogen of cause or combinations of them that will lead the experts to the "magic bullet". According to the latest edition of " The Journal of Chronic Fatigue Syndrome," ⁴ " The positive correlation with the number of types of autoantibodies suggests that with increased CFS disease severity more autoimmune phenomena can occur, and thus more organs or organ systems may be involved. CFS must be considered as a potential forerunner of a manifest autoimmune disease--multiple sclerosis, rheumatic diseases, autoimmune thyroiditis, ulcerative colitis, Crohn's disease, and systemic lupus erythematodes (SLE) frequently reveals periods of CFS or similar symptoms long before the diagnoses of autoimmune disease was established." This is quite a switch from what we've heard in the past about CFIDS being a self-limiting or non-progressive illness. Sense a little urgency? The longer you wait the worse it can get! Furthermore, the reversal is faster and less costly the sooner it is begun.

If you are the parent of a child or adolescent PWC and you believe he or she isn't being helped and if the severity of symptoms hasn't improved or is getting worse you must realize it is your move. Break out of the loop! The allopaths and we with them are stuck in a paradigm that has led to the conclusion that the best they can do for the PWC is manage symptoms with drugs.

Oxidative molecular injury to cell membranes is also referred to by scientists and other CFIDS experts such as Paul R Cheney, M.D.⁵ and Murry Susser, M.D.⁶ as free radical damage. Mountains of studies have been published in scientific and medical journals about the subject. That is because oxidation/reduction cycles (redox reactions) are spontaneous throughout nature and so basic to cellular homeostasis (state of balance and health). It is real science and those who incorporate it into their total treatment strategies are the ones who do real preventive medicine and who also apply the knowledge to support the body's reversal of illness. It is the study of redox reactions that has led to the use of antioxidants in nutrition and health care. Yet it is given the brush-off by many physicians as interesting but too esoteric for application. Good for scientific literature but not really related to one's particular specialty or to general practice. It is a key ingredient in the treatments of those who successfully help CFIDS sufferers! The concepts are actually quite simple to understand. For an in depth explanation in layman's terms see "The Natural Health Guide to Antioxidants"⁷ available in many pharmacies and health food stores.

Oxidative damage to cell membranes throughout the whole organism causes multi-organ, multi-system symptom cascades. This damage is most readily seen by high resolution phase contrast microscopy of erythrocytes (red blood cells). Dr.Ali's observations were first published in "Am. J. Clin. Pathol." 1990; 94:515(abstract).⁸ He explains that the damaged red blood cells were misshapen and clumped together which inhibits the flow of blood, especially in capillaries. Tissues and organs deprived of consistent blood flow suffer insufficient oxygen and nutrient delivery. This initiates other damaging molecular chain reactions. For example, hypoperfusion (insufficient blood flow) to the hypothalamus can cause the HPA (hypothalamus-pituitary-adrenal ) axis disregulations first observed by Peter Behan, M.D.⁹ in 1989 and discussed in CFIDS research literature ever since. The HPA axis is the core stress axis in man. These disregulations are believed to be responsible for many neurological and autonomic dysfunctions. Hypoperfusion in the brain tissues also can explain why MRI scans show U.B.O.s(unidentified bright objects),the small punctate lesions which Hillary Johnson reported on in "Osler's Web." As early as April 1986, Dr. Les Simpson of the pathology department at the University of Otago Medical School, Dunedin, New Zealand had reported similar observations in the journal "Pathology." He was guest research lecturer of Mass CFIDS in March of 1996 and presented his slides explaining how misshapen red blood cells cause rheologic (flow of blood) abnormalities resulting in hypoperfusion in brain tissues of ME patients and PWCs. He states with certainty that this explains most if not all the symptoms. What makes a person a human canary? The individual's cumulative oxidant injury caused by allergic triggers is one determinant. Most PWCs show ,by micro elisa assays, genetic markers of IgE antibodies. Dr. Simpson has given us a major contribution in his finding that there is much diversity in capillary diameters in humans. Those with larger diameters have better vascular systems and are the "natural athletes." Conversely, those with small diameters are more susceptible to impeded circulation of misshapen erythrocytes. These are observations which resulted from years of good scientific research. More that confirms all this: Dr. Anne Macintyre, an ME patient herself reported in her book "ME: How to Live With It" that similar findings were published by researchers Dr. Mukherjee-Austrailia 1987, Dr. Wakefield-Univ.New So. Wales 1989 and Kajid 1991. For more on red blood cell morphology see "The CFIDS Chronicle," summer 1995 p.55.

Dr. Ali has taken his observations several steps further than researchers whose studies concentrate only on hematology. He explains that the oxidative damage to individual cell membranes results in damage to enzymes (proteins) which are critical to molecular actions and interactions of cell groups-ultimately organs and tissues. How can a PWC have so many pains and symptoms yet have normal (within range) routine lab test results? Allopaths send PWCs blood samples to labs which use automated equipment to do white cell and red cell counts, sed rates etc. and pcr (polymerase chain reaction) to find pathogens. They don't look at the blood cells. Most funded researchers today are looking for pathogens. Those who look at red blood cells as I described above do see the problem--the damaged cell membranes. They publish, they prove, but only a few original thinkers act on the knowledge with appropriate treatments.

According to Dr. Ali, it really isn't important to know what the trigger was. In most cases the pathogen has been cleared by the body's defense systems. Even when a pathogen remains active or in evidence and is treated the oxidative damage remains and often the syndrome persists. "Agent X" in one PWC may have been a coxsackie virus, in another EBV, in another a chemical toxin. The damaged cells that remain are what must be restored.

Dr. Ali's approach to treating my daughter's CFIDS is holistic, aimed at supporting the body's own healing dynamics, both systemically and right down to a cellular level . He calls his practice of medicine Clinical Ecology and also refers to it as Molecular Medicine. It evolved from his orthodox allopathic training and career in pathology and also in surgery; then in allergy combining with study of immunology , nutrition and interests in alternative/complementary medicine.

This is a syndrome not a specific disease. With a scientific understanding of the human body as a biological ecosystem. he first asks, "How many ways can I support, what things can I do to restore this ecosystem to its natural state of balance." Then he does them all. And there's a lot that must be done: identify, eliminate and treat as needed all sources of oxidative molecular injury such as viruses, bacteria, chemical toxins, food allergies, airborne allergies, mold and fungus, and physical emotional and mental stress. Restore the bowel ecosystem which entails use of natural methods such as herbals to weed out harmful bacteria. Reduce candida and other yeast overgrowths. Identify and treat any parasites. Re-cultivate healthy gut flora (the normal , necessary bacterial colonies of a healthy digestive system). Help cells to repair their internal environment by giving them a supportive external environment. This facilitates membrane channeling functions. It is accomplished with protocols of intravenous and intramuscular nutrients and antioxidants initially and oral supplementation later on. Note the word "supplementation." Of great importance are correct dietary choices, eliminations, and modifications. The good clinical ecologist provides this guidance or has a nutritionist on staff who is experienced with diet and CFIDS. A good dietitian or nutritionist without this experience will be drawing on the knowledge of diet in healthy people with the standard food pyramid and can hinder the reversal process. (There's that "loop" again.) Understand also that high dose nutrient I.V. and I.M. used by clinical ecologists are not mainly intended to treat vitamin deficiencies, although membrane damaged cells are magnesium and potassium depleted and sodium toxic. The intent is to boost or kick-start enzymatic pathways and promote the internal/external cellular exchanges that restore homeostasis. A little "expensive urine" is well worth the results. That such heroic intervention is called for is evident. The body has long been trying but has been unable to reverse the oxidative damage unassisted.

This is not a do-it-yourself project. Many PWCs have tried nutritional supplements without apparent benefit. The use of oral vitamins and antioxidants alone even in high doses is not enough to restore cellular mitochondrial ATP production and cellular membrane pump functions. The intravenous and intramuscular protocols of carefully synergized components, especially of magnesium sulfate and potassium ( minerals , co-factors for enzyme functions ), taurine (amino acid, antioxidant), vitamin C (water phase antioxidant), vitamins E and A (fat phase antioxidants), vitamin B12, and B complex are key to initiating cellular restoration and reversal of oxidative damage. Then the oral supplements do provide benefit and help sustain the restoration. Get the care of a good clinical ecologist . Dr. Ali teaches I.V. therapy courses for CFS at annual meetings of the American Academy of Otolarngic Allergy and at instruction courses of the American Academy of Environmental Medicine. He has a reputation among other clinical ecologists as having the most scientifically thought out formulas for I.V. protocols. Many use his monograph "Intravenous Nutrient Protocols in Molecular Medicine"9 as a guide to preparing their I.V. solutions It is written for the professional but if you want to know what each nutrient is doing to cells and tissues I would suggest you read it. It has 141 references to the scientific and medical studies that helped him come to such a deep understanding of cellular metabolism.

There are several other clinical ecologists who have had success in reversing Chronic Fatigue Syndrome with these types of therapies. To name a few there are Jacob Teitelbaum, M.D.,¹⁰ Jesse Stoff, M.D.,11 and Julian Whitaker, M.D.¹² In Orange, Connecticut there is Dr. Robban Sicca at The Center for the Healing Arts. In Cambridge, Mass. there is Dr. Asis and his staff at The Marino Center. These are not quacks with mail-order Ph.Ds. They are respected doctors who have the vision and resilience to criticism from peers in the loop to use unorthodox methods because they know that they work! In fact most of the treatments you have read about in the CFIDS Chronicle used by many CFIDS specialists incorporate at least one, some a few and others several of the same alternative strategies that Dr. Ali uses. The main difference is that Ali "puts it all together." He has done his homework and makes use of all the accumulated science. As Jacob Teitelbaum, M.D. puts it, " The key to eliminating chronic fatigue is to treat all of the underlying problems simultaneously."

The fast action of an effective drug at a time of crisis is a godsend for urgent intervention of pain. The night Katie was hospitalized I remember how distressed we were and how grateful I was to the doctor who knew what to give her. However, long term use of drugs can and must adversely affect the prognosis. They are all toxic chemicals as noted in the introduction to the "Physician's Desk Reference." Dr. Ali emphasizes the inefficacy of drug treatments for CFIDS with his three Rs: chronic fatigue is Real, chronic fatigue is Reversible, chronic fatigue cannot be Reversed with drugs.. They add to the body's total toxic load and drain enzymatic energies for detoxification from the body's already depleted stores. See Dr. Scott Rigden¹³ and Dr. Paul Cheney's¹⁴ work for explanation of detox processes of gut, liver, brain and blood. Weaning off medication presents a dilemma to the PWC and caregiver / parent. However, as the body responds to the holistic restorative support, reversal begins and the symptoms all begin to improve together and weaning off of the drugs is accomplished quite rapidly. This is a milestone and contributes to a sense of hope, confidence, encouragement and relief. The PWC and parent will know they are looking at the light at the end of the tunnel.

Exercise also has a place in the holistic treatment of CFIDS. It must be gentle, non-aerobic, non goal oriented, patient-controlled types of exercise as simple as stretching or rebounding (effortless, shock-free bouncing on a trampoline). The goal-oriented, "push through the pain," "no pain no gain" approaches used by physical therapists in the loop are wrong. If they would examine the literature9 for the experiences of patients and doctors they would see dozens of accounts all the way back to 1958 of disastrous deterioration of the clinical condition of CFS, M.E., post-polio and post viral syndrome patients caused by these practices. The contribution of physical therapists to the teamwork in the loop is to drive PWCs into relapses. But they won't go to the literature and ignore it if you, the layman, bring it to them. They're the professionals, highly trained and you are the overprotective parent or wimpy hypochondriac patient. Here the patient is on his own and will learn to sense when he is approaching his limit the hard way - by exceeding it and paying for it. It is always better to err on the side of caution. As author Jane Colby ¹⁵ says, "It is ironic that some so-called "treatments" of ME--for those who have often been thought of as over-pushing themselves already--consists of encouraging these very people to do just that. What extraordinarily muddled thinking we are capable of."

Another aspect of Dr. Ali's holistic approach is to teach the patient techniques to alleviate worry and stress. He has developed a very simple controlled breathing method, easily taught to patients that allows one to clear the mind and bring some autonomic functions under conscious self regulation. Functions of pulse, blood pressure and temperature are monitored by the patient who is connected to specialized electronic equipment during the training session. This provides visual proof of the regulation and helps the trainee to master the technique quickly. Then the monitors are no longer necessary. It is not designed to make one an overnight yogi . It improves circulation , helps manage and even avert headaches and gives one the ability to do something immediate to cope with and manage symptoms. If it sounds hocus pocus consider that the most conservative, orthodox institution, The Mayo Clinic explains and recommends a similar technique in their "Family Health Book," 1990.

Don't buy into the "New Age" mind over body doctrine of many modern best-selling gurus. Dr. Ali says it is a " cruel hoax" inflicted on suffering victims which fails to heal as promised and then blames the patient for not being spiritual enough or not working hard enough. CFIDS is an illness of the body and must be healed by the body. The role of the mind in all of this is more of a non - role. Learn to calm it and keep it from interfering with the healing process.

Psychologists have helped people with illnesses of the mind. These kind, caring professionals truly want to help. Many sick, troubled people are so alone in their seas of despair. Someone who can offer a focused listen to them or show them new hope with options and possibilities and self-help techniques and coping methods can make a difference. A little encouragement and support can be the critical life-line or flotation device. It can be an emotional "magic bullet." Unfortunately, there's not a PWC who hasn't been harmed by the fields of psychology and psychiatry. The misinformation about the nature of this illness, promulgated in the professional literature of both fields and reinforced by the misinformation in the rest of the loop has given them a distorted perception of the CFIDS patient. They never really have dispensed with the notions of secondary gain, learned illness behavior, somatization and conversion disorder. How can they when it is repeatedly reinforced by all their peer "Simon Wesselys"? The PWC' s symptoms are often so severe that to get to the bathroom to brush his teeth may take him beyond his limit of exertion and bring him to collapse in fatigue. Yet he's supposed to be at his appointment for talk therapy which requires the walk to the car, the drive, the walk to the office, the light and noise, the draining effort of concentration while politely trying to cooperate with the psychologist who is "helping" him. Follow the PWC through this three or four hour ordeal and see him collapse back on his couch with an intense headache, his reward for accepting the best advice of his PCP and the experts in the loop. They just never fully comprehend the degree of the fatigue aspect of CFIDS. The neurological fireworks, misfiring synapses and energy drain of talking or listening often causes as much physical distress as over exercising. So, is the benefit derived worth the trade off? I don't think so. If the symptoms had been held to some level of tolerability by staying put at rest this would have been the better bargain. You can almost hear the therapist's irritated thoughts ,"The hell with these patients! They don't want to be helped! I can't help if they won't let me! My journals must be right about this CFIDS!".

In my opinion a really competent, astute psychologist must first be a perceptive observer of the human condition. In most CFIDS cases his appraisal would be "I'm really not the one to help you. Your problem is all in your body!"

On Sept. 13 ,1994 the U.K. National Task Force on Chronic Fatigue Syndrome¹⁶ published its first report. After two years of research by experts in a wide range of disciplines this report should have been the decisive word and should have laid to rest the unending barrage of money wasting and redundant psychological CFIDS research and its accompanying literature. Their findings were clear: CFIDS is not somatization, conversion, neuroticism, learned illness behavior etc. Depression is consequential to the illness .C.B.T.(cognitive behavioral therapy) shows little benefit in this illness. However this study went ignored by the experts' peers and the waste of research funds continues by the likes of Dr. Simon Wessely and his parrots, Dr. Stephen Straus and so many others. In my not so humble opinion and with all overdue disrespect, Gail Kansky of Mass CFIDS was right on when she labeled their literature "psycho--babble". The Hippocratic Oath admonishes, "First do no harm," These blindfolded, arrogant ignoramuses of the intelligencia are directly responsible for the negative public perception of CFIDS, gulf war illnesses, multiple chemical sensitivity and other emerging chronic illnesses. They provide the ammunition for negative court decisions and negative insurance compensation claims, the two year limits on disability income, the skepticism of our health care professionals, not to mention family, loved ones ,friends, coworkers, schoolmates etc. If I could wave a wand and give skeptics a dose of the syndrome to go along with their arrogance I would be tempted to do so. I would ask them to consider it C.B.T. for their scientific enlightenment, then tell them to go back to their word processors and author some more psycho-babble explanations. In no time they would turn from exercises in discrediting legitimate illnesses to desperately defending them. I'd also stick them in the loop, of course.

The new science of Psychoneuroimmunology gave birth to the "Journal of Chronic Fatigue Syndrome" in 1995. The journal's premiere edition featured a guest editorial by George Freeman Solomon , M.D. in which he described how this new transdiciplinary field would do research leading to understanding of immunologically - induced psychiatric symptoms. As more editions have been released it smells like the psychological cart has been put ahead of the physiological horse again. Psychoneuroimmunologists have begun to explain psychiatric conditions as the causeof immunological dysfunctions. The names get fancier but it's the same old psycho-babble! The government white wash studies of gulf war illnesses took quick advantage of this new "research" to pronounce that the vets were suffering stress induced illness. Common sense tells me that if stress had that much influence on immunology then we parents of severe case PWCs would be so immune compromised by now that we should be very ill if not dead!

Some fibromyalgia patients told me how pleased they were to have found the right doctor. This doctor has suffered with it himself all his life. I've heard him lecture on FM and CFIDS and he was quite knowledgeable and likable. He could commiserate and empathize with his patients. He had concluded long ago that it couldn't be cured and he learned to live with it and around it. This is what he teaches his patients through a tough love type of approach. I asked him if he'd read accounts of the efficacy of I.V. ascorbic and other such protocols. He said something like, "Nope, and I don't want to see it either. Don't believe in it. It just gives you expensive urine." This angered and saddened me. These patients had finally found the right doctor? The man can't even help himself and now they will subject themselves to this brand of "help"! CFIDS / FM sufferers don't need to learn to cope and live with it! They need help, and efficacious treatments, reversal and recovery. They need their lives back! Compassion, personality, experience, popularity -- these are nice but aren't the qualifications to choose a doc to help you or your kids. Find one with skills, treatments that help heal not just "manage" symptoms, a track record, a mind open to new applications of science, a credentialed board certified M.D. who is also a clinical ecologist! If a person could get this kind of medical care early, even during the process of having all the specialized exclusionary tests then what is defined by CDC as idiopathic chronic fatigue could be reversed before the condition deteriorates for six months into CDC-defined Chronic Fatigue Syndrome. To the new patients I say get the jump on reversing it sooner, less costly, easier, faster. Don't stay in the loop. You could well avoid ever reaching the six month "qualification" and "the diagnosis." You'll never know what you are missing! Don't believe there's no help! Help is out there. But it's not in the loop.

One reason we get stuck in the loop is money. Our insurers will pay for services in the loop but not for the clinical ecologists who can actually help. To cut to the chaff, you might have to literally go for broke. You might have to trade down to a junkier car or work another job or use plastic and go into debt. The insurers and the loop that they are a component of can be thanked for this situation. Still, it takes whatever it takes. It hurts but prudently remember this -- time is against the PWC who languishes in illness but time works to his benefit every day once the reversal process is begun!

Another reason we stay stuck in the loop is that there is so much contradiction in the medical literature, the internet, medline, libraries and the lay media. On a trip to UCONN Medical School's Lyman Library I found a total of two"hard copy" books on the shelves in reference to CFIDS. One was the excellent , encyclopedic "The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" 9 by Byron Hyde M.D. of the Nightingale Research Foundation in Ottawa, Ontario, Canada. It is a compilation of research from all over the world with contributions by every expert from Ablashi to Yousef. Yet the card in the jacket showed that not one doctor, not even one medical student had checked the book out in over three years! This implies that our docs are either drawing their knowledge of CFIDS off medline or other Internet media which are loaded with misinformation whether of NIH or CDC origin and intentional or simply products of sloppy investigative reporting, or they are getting it from medical journals like S. Wessely edited "Lancet" (psycho-babble) or "JAMA" ( straight from the loop, though sparse ). The real research by the guys who've been in the trenches for years sits on a shelf collecting dust while we, privately in our groups and as taxpayers, fund more research, much of it by the psychiatry " scientists," much of it redundant but some of it just plain lame such as Boda's and Natleson's "study" to determine if CFIDS sufferers walk and run slower than healthy controls! It's a field day for microbiologists and immunologists who, of course, love their science and want the work. They do good work that contributes to the total of scientific, medical and biological knowledge. But like the war on cancer, CFIDS research has already become a money machine monster and yields no better clinical results for the patients. All this time we've been clamoring for more research! We should just direct the bucks to treatments for PWCs by those who can show enough "anecdotal" evidence, that being PWCs who have been helped!

The second book that the medical library had on the shelf was not dusty. It had the deceptive title "Alternative Health Care - A Comprehensive Guide" by Jack Raso, M.S., R.D. The book is a listing of references to and briefs of medical journal articles critical of and discrediting every form of alternative medicine you ever or never heard of. CFIDS was treated in the section on "Fad Diagnoses." There were 21 articles critical of Clinical Ecologists, 10 articles attacking William G. Crook, M.D. who authored "The Yeast Connection" and others who treat candida albicans, 15 articles attacking Biofeedback training and several denying the existence of multiple chemical sensitivities.

Now, I was already familiar with the work of Jack Raso. He is co-editor with Sam Barret, M.D. of a newsletter "Nutrition Forum" ( another deceptive title - some issues never even discuss nutrition ). Sam Barret is the author of "The Health Robbers" and "The Vitamin Pushers," both recommended reading at medical schools. "Nutrition Forum" continues the attacks of the book mentioned above and tries to keep current with the ever sprouting new alternative health modalities. Their goal is to let no medical practices outside of biomedicine escape uncensured. These two men have become the unofficial watchdog quackbusters for The American Medical Association. The AMA member physicians, through the vehicle of their medical journals and especially through these two spokesmen were and remain very aggressive in trying to undermine the agenda of the new Office of Alternative Medicine (OAM ) of the NIH even as it was first being created ( the OAM was mandated by congress and established in 1991). The OAM's stated objective is to gather all the alternative medical information from all over the world, categorize it, get it into data bases then systematically sort out, with NIH funded controlled studies, whatever works as well as or cheaper or can be used complementary to orthodox western medical practices. The AMA doesn't want any part in it. They see it as a threat to their influence, to their position as the only bona fide medical experts, to their prestige and to their dollars. Many in the AMA also sincerely see it as a threat to safe health care.

Barret and Raso actually do an excellent job quackbusting and fill a very real need for consumer protection. There are hundreds of quacks and charlatans out there. For every one sick, suffering, desperate or gullible person there are hundreds of these predators and parasites. Early on in my pursuit of anything to help with CFIDS I got suckered by testimonials of sincere people ( that astonishing placebo effect! ) into spending a lot of money on pond scum called super blue green algae. It's embarrassing to admit to it but at least I can take pride in the fact that I refused to join the marketing racket because I hadn't seen any noticeable benefit from the product. A lot of people are making money, even making a living off of it and many still believe that they are helping people. It turns out Raso had exposed it in Nutrition Forum.

If you look at the directory to the "Greater Hartford Holistic Health Association" you'll see some useful services offered such as yoga, acupuncture and a few others but under the same cover are such questionables ( my opinion ) as rebirthing, past lives therapy and other New Age junk. If I was an M.D., having spent years in medical school, I wouldn't want my name associated with these. This may in part explain our allopath's refusal to consider anything they didn't learn in medical school. But that's not a good enough excuse. Not when all their orthodoxy hasn't done a thing to help. Not when measured against a few others who have found the courage to break out of the loop and have shown the vision to incorporate science that helps into their treatments. Although Raso and Barret deserve some commendations for their watchdog vigil they also deserve censure. They have thrown some babies out with the bath water.

Katie's treatment began the last week of June '96. We stayed at a modest but comfortable motel about two miles from the clinic, "The Institute for Preventive Medicine" in Denville, New Jersey. Dr. Ali and his staff have a treatment plan for out of state patients designed to control costs and limit the time required to one week for the initial treatments. Each day's schedule is quite long, from morning to early evening, planned to maximize use of time yet allow for the PWC to return to his motel for resting between sessions (absolutely needed). It is a difficult and trying time none the less. But the consideration and understanding of CFIDS shown by the staff helps make it more tolerable( in contrast to the skeptical attitudes and inconsiderate exacerbations so often encountered in the loop.) Each day was comprised of medical tests, educational sessions with different members of the large staff (8 RNs, 7 LPNs, 3 consulting M.Ds and 3 Ph.D. lab scientists), I.V. therapies, I.M. therapies, allergy immunotherapies, review of blood and chemistry panels, autoregulation training, detoxification education, sessions for instructions on home follow - up care including detailed diet planning, customized nutritional supplementation and I.M. follow - up protocols to be administered by a visiting nurse.

It has been Dr. Ali's experience that for CFIDS patients with symptoms of less than one year reversal of chronic fatigue and related chronic immune dysfunctions is usually achieved within 8 - 16 weeks. For patients who've had the syndrome longer the recovery process may take 6 - 12 months.
My daughter has diligently followed all of Dr. Ali's directions and the progress she has made in reversing the syndrome is amazing. She is drug free after months of conventional symptom management with powerful toxic chemicals, for daily severe headaches, joint and muscle pains and sleep difficulties. When she does still experience cognitive difficulties or light and noise sensitivities it signals her to take a rest and they resolve. She smiles, plays with her little brother in the snow, reads him stories, does her own food preparation, helps her mother with housekeeping chores, has fun outings and visits with her friends. In short she is getting her life back. It's been six months since beginning alternative treatment and she's had no relapses. Too soon to claim this is recovery but this is without doubt reversal -- steady, slow, but sustained. If relapse does occur I am confident that her careful compliance with Dr. Ali's advice and protocols will rescue her and continue the reversal.

I urge you to at least read " The Canary and Chronic Fatigue "² or obtain and view Dr. Ali's three video set on reversing chronic fatigue.¹⁷

                                                   
Notes and References:

1    Majid Ali M.D. Journal of Advancement in Medicine vol. 6 no.  summer 1993 2
2    Majid Ali M.D. The Canary and Chronic Fatigue available from Life Span tel. 800-633-6226
3    Dr. Ali's term for de-personalized high technology based model of treatment with its over dependancy on specialized testing from unseen labs etc. and its focus on disease/drugs It is the opposite of holistic care
4    Journal of Chronic Fatigue Syndrome vol 21996 pages 44+45
5    Paul R. Cheney M.D. + Charles W. Lapp M.D. CFIDS Chronicle fall 1993 (cellular detoxification of brain, liver and gut, boosting ATP
6    Murray Susser M.D. CFIDS Chronicle fall 1993 ( Vicki Carpman's article on Multiple Chemical Sensitivity - reducing total toxic load with antioxidant therapies including I.V. vitamin C, E, and beta carotene and free radical scavengers)
7    Nancy Bruning The Natural Health Guide to Antioxidants April 1994 (published by Bantom Books ISBM 0-553-56579-6 with contributions by eleven top university and private researchers)
8   Ali M.D. Am J Clin Pathol 1990 ; 94: 515 (abstract) this is also reprinted in the appendix of his book The Canary and Chronic Fatigue see ref. 2
9   Peter O. Behan M.D. The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome by Byron Hyde M.D. of The Nightingale Research Foundation (chapter 2)
10  Jacob Teitelbaum M.D. CFIDS Chronicle vol.9 no.2 spring 1996
11  Jesse Stoff M.D. author of Chronic Fatigue Syndrome - The Hidden Epidemic 1988 Dr. Stoff practiced in Mass. for years, presently heads a clinic in Tucson Arizona and has plans to open a practice in N.Y. in 1997 tel. 520 290 4516
12  Julian Whitaker M.D. Health and Healing newsletter vol.2 no.7 July 1992 . tel. 800 722 8008 13  Scott Rigden M.D. CFIDS Chronicle vol.8 no.2 spring 1995 (Entero Hepatic Resuscitation)
14  Paul R. Cheney M.D. CFIDS Chronicle vol.8 no.2 spring 1995 (Vicki Carpman's article about Paul Cheeney's strategic approach to CFIDS treatment)
15  Jane Colby ME - The New Plague 1996 published by The First and Best in Education
16  CFIDS Chronicle vol.8 no.2 spring 1995 U.K. National Task Force Releases Report
17  Dr. Ali's 3 video set on reversing chronic fatigue (available from Life Span tel. 800 633 6226)


(c)1997 Joe Foran