A puzzling ailment afflicts millions of women and men. Patients complain of extreme tiredness or fatigue. "I'm always exhausted, no matter how much sleep I get," they say.
Fatigue seems the main symptom. Yet, patients may report problems sleeping. "I wake up tired, even though I slept well," they say.(On sleep studies almost no M.E.CFS patients actually have any significant stage 3 & 4 deep sleep, which is essential to restore brain function and lay down new memories.) Patients may have difficulty thinking clearly, concentrating or remembering. They complain of frequent headaches, muscle and joint pain, a severe sore throat or tenderness in the neck or armpits. These symptoms may flare up after limited mental or physical effort.
Often unable to detect a known illness, usually after superficial examination and tests, physicians diagnose Chronic Fatigue Syndrome (CFS). The diagnosis is mostly descriptive. Treatment is often a rebuke, "Pull up your socks and get back to work or school" or antidepressant medication.
As the pace of life gains speed, more physicians diagnose CFS. Social classes or ethnicity offer no shelter against the symptoms or diagnosis of CFS. Women are twice as likely as men to report CFS symptoms. (70% of M.E./CFS patients are female as is found in many autoimmune diseases such as MS & rheumatoid arthritis.) Children are as likely as the elderly receive the CFS diagnosis.
The CFS diagnosis applies to about 4 million Americans. The number of such diagnoses goes up every year. One-in-four of those diagnosed, with CFS, can't work or on disability. (The figure is more like three out of four.) More and more, disability insurance companies find ways not to pay those diagnosed with CFS.
Byron M. Hyde, M. D., is Director of the Nightingale Research Foundation. He's a leading authority on CFS and related illnesses. In this interview, Dr. Hyde talks about the essence of the ailment and problems of diagnosis. He offers new insight about the ailment and the diagnosis.
As Dr. Hyde notes, that up to half of the women and men diagnosed with CFS are falsely saddled with the diagnose of depression. It's not surprising many victims don't seek medical advice; they want to avoid the baggage of mental illness. The misdiagnosis also leads to the wrong treatment.
Some patients present as CFS, but have serious, treatable illnesses that are missed by their physicians who find it more convenient to pass these patients off as depression or anxiety neurosis. These illnesses include diabetes, thyroid disease or substance abuse. Undiagnosed, the patient gets worse when they could get better.
Looking behind the facade, of CFS, notes Dr. Hyde, calls for digging. All patients need a full work up before a physician offers a valid prognosis. Thorough research is essential.
A former geophysicist, Dr. Hyde is a published poet. In his premedical days, his instinct for decisive action saved the lives of actors, Yoko Tani and Anthony Quinn. For more than 40 years, he's practiced a learned form of common sense medicine. The Nightingale Foundation, which he founded, in 1988, provides hope, compassion and cures to new patients, every day.
If you're living under a diagnosis of CFS, you need to read what Dr. Hyde has to say.**
Redacted 10 April 2011 by Byron M. Hyde, MD
Grub Street (GS) The diagnosis of CFS and related illness seems on the rise. What do you see, at the Nightingale Foundation, daily?
Byron Hyde, MD (BH) Overall, circumstances are troubling. We see patients, at the Nightingale Foundation, every day. Patients come to the Foundation, with a diagnosis, made by other physicians, of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). The CFS diagnosis relies on the most obvious symptom, exhaustion and cognitive dysfunction, by physicians who usually don't take the time to research the patient.
These women and men present exhausted and significantly ill. Often, these patients need 12-to-15 hours of sleep, at a stretch. They can't go to school or work because they are so desperately exhausted and ill.
Mostly what's noticed and focused on, by other physicians, is the obvious fatigue. This leads to a diagnosis of CFS. From this point forward, physicians who do not know how to test these patients often find no abnormalities and tend to dismiss these men and women as psychiatric patients.
GS CFS, then, is an oversimplified diagnosis, often given if a physician doesn't know what else to say?
BH I guess you could say that.
GS At the Foundation, you do more?
BH Yes; at the Nightingale Research Foundation we try not to give such a diagnosis, when we see these patients. (First, the insurance companies tend not to give CFS their disability pensions; we would injure the patient further by giving the blank diagnosis of CFS. Second, most of these so call CFS patients, in fact, are ill due to several missed pathological conditions for which they would receive their disability pensions.) We research them and their underlying conditions. Often, our investigations reveal unnoticed chronic pathologies. Of the people that we've seen in the last five weeks, for example, we picked up an overlooked case of lung cancer but that is only one of many missed diagnoses due in part to “8 minute visit efficient medicine.”
At the Foundation, we recently picked up a case of a young [professional]. He was first seen (but not seriously examined), by reputable physician, at the Ottawa Hospital. The physician decided he had CFS. The treatment plan included antidepressant medication.
What this young professional suffered was serious and potentially lethal. The main aorta, coming out of his heart, was significantly injured. Undiagnosed, his aorta could have ruptured, and the patient would have died.ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½ï¿½
GS How can anyone overlook such a serious condition?
BH If you don't research, you don't know. Physicians should be asking what are the underlying illnesses of the CFS patients? CFS in not a real diagnosis it is a serious pathological symptom. How can patients be so exhausted; fatigued to the point of collapse? These are basic questions. The answers lead you to the right diagnosis.
GS Are ME and CFS the same illness?
BH Chronic Fatigue Syndrome (CFS) is not an illness, it is a serious pathologic symptom. It's a definition of a syndrome or set of symptoms. It's not much of a definition, either. Myalgic Encephalomyelitis (ME) is an illness in that it is a known epidemic illness with an acute onset, an incubation period of 3-6 days, that has occurred in over 60 epidemics. This illness is associated with a diffuse CNS encephalopathy primarily affecting the non-motor cortex.
There's much confusion, when it comes to CFS, for many reasons. I studied medicine at the University of Toronto and then at the University of Ottawa, about 40 years ago. Many patients, at the time, presented with severe fatigue. Physicians, then, assumed women and men had a chronic illness such as tuberculosis or a long-standing infectious disease, malignance. ï¿½Multiple-Sclerosis (MS) illness was another diagnostic possibility which prior to MRI technology was also frequently diagnosed as anxiety neurosis or depression because it was most frequently seen in young women. Today, the diagnosis, of a patient presenting with severe fatigue, is CFS. It is a convenient and for the patient, a dangerous diagnosis leading to a cessation of any serious investigation and often a psychiatric label.
In the old days you would explore, order tests and consider the results. This led to the cause of patient fatigue. Today, it seems, the easy assumption is CFS and a psychiatric diagnosis.
There is of course no cure for CFS, as it's a definition of a symptom. Physicians cannot cure a chronic symptom but they can often cure a chronic pathology. The false psychiatric diagnosis can lead to a lifetime of useless and at times dangerous medications. The patient must find a way to live, perhaps, on disability insurance or welfare rather than finding a potential cure. The extra stress of the easy way out, that is, a CFS diagnosis, piles stress on stress.
GS Seems if a Tibia is intact, even though the Fibula is split, there's no broken leg.
BH We've reached a point, now, where patients, who present with severe exhaustion, almost reflectively receive diagnoses of chronic fatigue syndrome. Many physicians assume CFS is a psychiatric illness, without fully exploring the CFS causes. At the Foundation, we see many patients, diagnosed with CFS, but suffering more serious illnesses. Besides the cases of lung cancer and the aortic problem, we also discover undiagnosed cases of multiple sclerosis (MS). MS is an autoimmune disorder. If you have MS, your normal autoimmune abilities runs amok and attacks the central nervous system (CNS) attacks your autoimmune system.
GS This is frightening.
BH Now, to give you another example, I've been practicing for 42 years. I examine every patient for syphilis. In 42 years, I've only picked up three cases of syphilis. Recently we've also picked up a case of chronic tertiary syphilis of the brain in a patient who had seen three physicians including an infectious disease specialist, lulled by the false diagnosis of CFS who did not test the patient. Aside from causing chronic brain disease, he could have potentially infected others.
The question remains: is it worth checking people for syphilis, today? It's so rare. Until recently a physician is more likely to pick up AIDS before he discovers syphilis. The answer of course depends if you are practicing efficient 8 minute medicine or whether you insist on why the patient is ill. CFS is not a diagnosis it is a symptom of any number of diseases. CFS does not have a pathology. Therefore CFS does not have a treatment.
At the Foundation, this professor with syphilis; a disease essentially eating his brain away was obviously treatable. Also there was a specific test necessary to identify the problem. As long as you did this test, the real diagnosis was available and the problem was manageable. No one did the test before he came to the Nightingale Foundation. He insisted he had CFS due to an immunization. He was mistaken and so where his physicians who dismissed him with the diagnosis of CFS.
GS The physician assumed he had CFS? This seems a baseless assumption.
BH Yes; we must not treat men and women, with chronic fatigue syndrome, until you know the underling diagnosis. Let me repeat. CFS isn't an illness. It's not a disease. CFS is a symptom, of something. We have to look behind symptoms to find out what's causing it and consider what we can do to treat the problem.
GS Many people, physicians or not, might find doing much research tedious. It does tax knowledge and skills.
BH Research is an enjoyable pursuit. The M.E. and CFS patients are intriguing and medically fascinating and rewarding. I never know when a new patient walks in what you are going to find. We often find illness, in most of these patients. Most patients come to the Foundation not just ill but chronically ill and chronically misdiagnosed. What we uncover is treatable, in one-way or another. Nor is the physician and the public the only cause for concern. Most patients assume that they have an infection, that if the physician identifies the infection and gives the appropriate medicine they will be healthy again and back to school or back to work. This theory of a single infection causing CFS has infected American patients and physician’s logic since 1984. It is a false theory promoted by a few private labs and individual physicians. I believe that it is a theory that exists for some physicians and some private testing laboratories and some pharmaceutical companies to become very wealthy and for other University based physicians to obtain grants and publications. I honestly believe that the cause of most M.E. and CFS patient’s illnesses are due to a large variety of undiagnosed and potentially treatable pathologies.
Before we leave this subject of cause let us look at a viral illness that previously was much better known than it is today, poliomyelitis or paralytic poliomyelitis. Millions of children and adults fell ill with poliomyelitis, many recovered, many died and many remained permanently paralyzed. We know this disease was caused primarily by four viral subtypes; poliovirus 1, 2 & 3 and one of the Coxsackie enteroviruses. Polio and Coxsackie and ECHO all belong to the enterovirus family. Despite millions of individuals falling ill and dying, despite tens of thousands of researchers being paid billions of dollars to discover a cure or a treatment, no treatment was ever discovered. However, due to Salk and Sabin and their co-workers, two wonderful immunizations were developed to stop children and adults from falling ill with poliomyelitis, dying or being permanently paralyzed. If we could not find a treatment for polio with billions of dollars being spent, do you seriously believe that with the negligible funding for M.E. and CFS research we are ever going to find a cure for a viral caused M.E. or CFS. Surely you would believe the public is not so gullible to believe that a cure is imminent, yet they are. Such is the continued belief in what I believe to be the snake oil salesmen.
GS On your website, you write there's a difference between ME and CFS.
BH Well, from our view, the two are different. Chronic Fatigue Syndrome (CFS) is a symptom. Myalgic Encephalomyelitis (ME) is an illness. It usually picked up in epidemics, but also sporadically. As far as I'm concerned, ME is caused by measurable, diffuse injury in the central nervous system (CNS), chiefly the brain. (The CNS refers to the brain and the spinal cord.) However, if I am correct, I believe this infection leads to many organ and system injuries and it is these organ injuries that I believe are potentially treatable.
Weï¿½ have good technology, in Canada or the United States or anywhere, for that matter, to examine the anatomy and morphology of the brain. We have very little and that is also scattered technology to tell us properly, how the brain works. There is is no technology to evaluate, in any full sense, the physiology of the brain or spinal cord in Canada. You can do an X-ray, Magnetic Resonance Imaging (MRIs) anywhere in Canada’s south, however these technologies largely are involved in looking at the anatomy of the brain. However SPECT-scan technology or Positron Emission Tomography (PET scans can look at physiology or how the brain works. To my knowledge there is no PET scanner in Canada with soft ware to diagnose brain physiology and if there is, it certainly is not available to the general medical public and in all of the provinces of which I am aware it is not a public insured technology. With these technologies you have to obtain an idea of the blood circulation and the metabolic changes in brain cells, but to my knowledge we haven't mastered looking at the physiology of the spinal cord, in any country in the world. The spinal cord may well be the major cause of many of the pain syndromes known as fibromyalgia syndrome.
GS Have you lost faith in proper diagnoses?
BH No, I haven't lost faith in physicians. There are brilliant physicians in Canada, the United States and in the entire world. That's not the problem.
Part of the problem is that medicine doesn't pay any more. When I started practicing, 42 years ago, I was able to buy a house - which I still live in - for $39,000. Working 7 days a week, 16 hours a day, I was able to pay off that house mortgage in four years. I was able to put aside $10,000 a year for four years and pay off that house.
These days, the same house is worth maybe $800,000 to a million dollars. If I were starting, in practice, now, I couldn't pay off that house, in my lifetime from my medical earnings. That yardstick gives you some hint of how much the income of physicians has been eroded over the last 40 years and why there are a decreasing number of available physicians today.
GS How have practitioners responded to their eroding income?
BH Most physicians come out of medical school owing a huge debt. Medical school is not cheap. Immediately, they must choose: work a hospital, clinic or larger practice or set up their own practice. They go into a practice and find that they can barely survive.
A physician, managing a practice, is a small businesswoman or man. His or her products are their medical knowledge, their diagnostic abilities, their energy and compassion. As in any small business, a physician tries to hold on to his or her practice by becoming more efficient. More efficient has increasingly come to mean seeing a patient for seven or eight minutes; I think that's an average time a physician sees a patient in North America and Western Europe. Physicians get patients in and out, quickly.
A good way move patients, in and out, quickly is to give a psychiatric diagnosis. No one can approve or disapprove a psychiatric diagnosis. If you say, "Oh, this person is depressed, this person is anxious," nobody can fault your diagnosis. You can say, "Well, he or she acted depressed, had a great deal of anxiety or complain of not sleeping, being anxious and so forth. We did the routine tests and didn't find anything. So, it must be psychiatric." However, like CFS, depression is not a diagnosis, it is a symptom either of the patient’s complaints or the physicians strive for efficiency. The word depression is a catch all term that in most cases does not have a single testable pathology and in many cases, as in CFS, is simply ficticious.
GS What's involved in routine testing?
BH That depends upon who is testing or how they view CFS. For most physicians routine testing involves less than a dozen blood and urine tests. Rarely is an X-ray, of the chest, done or an Electroencephalography (EEG).
When I began practicing, chest X-rays were common. You wanted know who had tuberculosis and who didn't. A chest X-ray was the most effective way to answer this question. Evacuation of tuberculosis is no longer a major or even a minor problem, in Canada, except among certain immigrant groups. So, physicians have almost stopped doing chest X-rays. An X-ray is the height of technology used by most physicians, today, although much more seems necessary.
Let me give you an example. If you had a patient, with a fatigue syndrome, you might think, "Oh maybe this is thyroid." Thyroid is a common cause of fatigue. Most physicians would do one to three thyroid tests. They'll do a thyroid stimulating hormone (TSH) test and, maybe, a T3 maybe a T4. When the test results are normal, they say, "Well, it's not thyroid, it has to be something else." Maybe you are ... overworked or stressed. A psychiatric diagnosis follows.
Most physicians don't have time to go further. There are about ten thyroid tests a physician can order. For instance, if the patient has Hashimoto's thyroiditis, which is an autoimmune disease that destroys the thyroid, you won't necessarily see any abnormalities in the three tests I mentioned until very, very late in the illness. This may be years before those tests show positive. Meanwhile the patient is ill with a treatable disease. So, most physicians wait until the patient is severely ill, when the symptoms are most obvious. This may go on for years. All the while, the patient was treatable.
At fault is how physicians earn money. Increasingly, too, physicians don't use the wonderful medical technology that exists. In Canada, this technology is free, for every patient and physician. As a result, many physicians turn into Luddites. For the sake of efficiency, we avoid using some of these brilliant medical tools, which are now have available to us. Treating physicians are not paid for writing out a long diagnostic description for the hospital or clinic based physician, nor are they paid for seriously reading the actual brain scan. Too often physicians read the last line of the report based upon insufficient information given to the specialist in the first place. Rarely if ever does the treating physicians take the (non-paid time) to actually go to the hospital and review the actual brain scan with the technical physician.
GS How much time do you spend with patients, at the Foundation?
BH My first patient visit is a day and a half. That may seem excessive, but my patients often come in great anxiety, suffering much stress. She or he may have lost their job, their family or their savings. They may be a single mother, who can't support her children, because she doesn't get welfare. A family might eat away at their assets, which lessen quickly. So, of course, my patients are nervous and expectant. We must take time, with them, to avoid overlooking or missing the cause of their symptoms. Too often the patient has bought into the idea of a miracle cure as I have mentioned earlier.
As I have mentioned earlier, too many physicians often give these patients a psychiatric diagnosis. Physicians often tell patients, "Pick up your socks and go back to work or school." These men and women may need 14 or 15 hours, of sleep, a day, because of pure exhaustion from their illness and still cannot function. How can he or she work or go to school?
GB Doesn't medical school encourage thoroughness?
BH There was a famous Ontario physician, William Osler. He's probably best-known as the father of modern medicine. Essentially, he developed the idea that unless you properly research a patient, you don't know what is making them ill nor can you adequately treat them. I follow this as a rule because when a CFS or M.E. patient comes into the office we just don't know what is the underlying cause of their pathology. I don't know how many other physicians follow the lead of Osler.
For instance, let me get back to this young professional we diagnosed. His aorta was in serious trouble and ready to rupture. There are two main possibilities, in such circumstances.
The first idea, but the rarest cause in Canada, of this pathological aorta condition, is brucellosis. I've only picked up about four or five cases in 40 years. It's not a common disease, but it can destroy the aorta. Why do I know a little about that? It's what my father died of when he was 48. You look for causes you know about.
We tested this patient, the young professional. The test results showed positive brucellosis. He'd been in a country where brucellosis was common. He had a positive reaction. Was this then sufficient to stop the research. I am sure most physicians would say that was sufficient and often they might be correct.
I could have assumed that was the problem, but I asked if he had any family members, with problems with the aorta. I asked because there's another disease, Marfan's Syndrome, which, if you don't catch it, usually causes the aorta to rupture and the patient to die. This usually occurs ï¿½when the patient is 20-to-30 years old. Marfan's is fatal, but if you diagnose it sufficiently early, an aortic transplantation solves the problem.
Most people, with Marfan's, are obvious. You picked up the symptoms early and easily. Still, many are less obvious.
This young man was such a case, although not readily obvious. I asked him, "Were there any family member, who had Marfan's?" He said, "Absolutely not." I asked him to take a family history, and come back to me in 10 weeks. He complained, "It's a waste of time." I said, "Please can you do it anyway. Call all of your grandparents children and grandchildren and ask. He didn’t know most of them" He returned totally astonished. He hadfound three second cousins, who had their aortas replaced in their 20s and 30s.
Here we have a diagnosis of a patient who presents with CFS. The diagnosis, by an eminent professor and physician, at the Ottawa Hospital, was CFS. The physician put him on an antidepressant. Thank gawd, the patient didn't take the medication, he could have died. All we had to do on him was an echocardiogram (This non-invasive technology visualizes the anatomy of the heart and aorta.) Marfan's showed up immediately, in the echocardiogram.
You have to explore these people. You can't consider CFS or ME a psychiatric or low-weight disease. We are dealing with various pathological illnesses here. In fact, I do an ECG, ECHO-cardiogram, Stress heart exam, and 24 hour Holter monitor on each new CFS patient. At least 25% of the CFS patients have a cardiac pathology that has never been diagnosed previously.
GS What motivated you to give up your regular practice, and start the Nightingale Research Foundation?
BH In 1984, I was busy, as always. A young Irish physician, Sean, and his wife, a senior hospital intake worker, were white water kayaking on the upper Ottawa River. They stayed overnight at my house, in Ottawa. When they were leaving, the husband said, "Stop working for a couple days, Byron, and come join us at a party, in Montreal. It'll be fun and interesting."
I'd interned in Montreal, and love the city. The idea was tempting, but I was too busy. I didn't go.
About a week later, I get a call from Sean, my Irish physician friend. He and his wife, and about half the people at the party, had fallen ill with a strange disease. They suffered with pain, had severe headaches and didn't have the energy to get out of bed. Worse, they did not get better over the next several months and they started to notice serious cognitive problems. The same was true for the rest of their friends who attended that party.
I thought, "My God! What in the world is going on?" I kept in contact with Sean and his wife. She was running, I believe, an outpatient department at McMaster University medical school hospital, at the time.
They didn't get better. In fact, the wife has never got better. That's 1984 to now. We are looking at 24 years. Sean did slowly improve significantly but never returned to full health. His wife did not do as well.
Much later, Sean returned to study psychiatry, which allowed him to see less patients per day. In general practice, you are going night and day; interns and surgeons never stop. You need much energy to work this profession. In psychiatry, you can take one, two or three patients a day, depending on your ability to cope with your exhaustion.
That was the first motivation to start the Foundation. Then my daughter fell ill, in September 1984. I thought she had the same illness but thankfully I was mistaken. Initially I phoned the Center for Disease Control in Ottawa, but no one had any idea of M.E. at that time, then there was no entity called CFS. This was a later invention. I called the Center for Disease Control and Prevention, in Atlanta, and no one knew anything about it, either.
However Atlanta referred me to a good physician, Dr. Charles Poser. He's a world-famous neurologist, at the Harvard University, School of Medicine at Beth Israel. Someone, in Atlanta, said, "He knows more about this illness than anyone in the United States." I called Dr Poser, right away. He said, "Well, why don't you come down and I'll tell you what I know."
My daughter got better. She had a viral infection that knocked her down for two or three weeks. Later she was well enough to do university, working full time during her undergraduate years for the Canadian Senate. Later she earned a graduate degree and work, without any problems.
GS It's always strangely interesting how important contacts form.
BH Yes; at this point, I decided to take a month off. Dr Poser was a leading expert in Multiple Sclerosis (MS), and a wonderful neurologist. His definition continues to be the primary MS definition today. I went to Cambridge, Massachusetts, and spoke to him. I wanted to see what I could learn about this strange illness I had previously never heard about.
Dr Poser took an entire day and he then invited me to stay at his house. He talked to me about what he knew and how often patients were coming to him, with a diagnosis of MS, when in reality they had Myalgic Encephalomyelitis (ME). The M.E. group didn't have any demyelinating lesions, but they did have oligoclonal banding. When you see oligoclonal banding in the spinal fluid, you know there is physical brain damage. Immunoglobulins form oligoclonal bands, in the spinal chord. This simple spinal fluid test checks for inflammation-related substances in the cerebrospinal fluid (CSF). This fluid originates in the brain but is retrieved from the spinal chord. The presence of immunoglobulins suggests inflammation of the central nervous system (CNS). The presence of oligoclonal bands is usually taken to be a sign of multiple sclerosis (MS) but it also occurs in early M.E. and CFS.
Poser told me I should go and see two or three physicians, in England, who know about ME. One of these physicians was John Richards. Charles Poser and John Richards changed my life. These were astounding physicians who changed my life. They not only made my life more interesting, enjoyable, and rewarding but in many ways it was really the start of my medical education. Due to them and others such as Drs Ismael Mena and Jay Goldstein, I've been able to help many patients, with ME.
GS What is the effect on the psyche when a physician decides not to take the condition seriously?
BH You become an island into your own. There are many charlatans, ready to jump on these patients. Many patients throw their last dollar, at these charlatans, who play to hopes and dreams of getting better, if not cured. Those physicians who do not take M.E. and CFS seriously, in effect, drive patients to seek out these charlatans.
Those who run to charlatans are in panic. They are in understandable severe anxiety. They lose their houses. They sometimes lose their families. Devastated is the best way to describe their lives, when many come to our Foundation.
Besides, chronic illness in young people is no fun. It's no fun in elderly people, either. For older women and men, though it might be a little easier. Many older people have stopping working. Retirement income helps ease the mind. Whether they get better or not, their pensions keep them going to some degree.
For the young person, who hasn't built their fortune, hasn't build their nest egg, there may be severe psychological issues. If you are young and ill, that's enough, but many of the younger patients realize their future, their hopes and dreams, are at stake. They just simply don't know where to turn. It's a pleasure trying to help these people and, with the help of some lawyers, in Montreal and Toronto, I've been able to help these people get their disability insurance. However children do not have disability pensions of any merit. In Canada, provincial pensions are starvation pensions.
GS Disability insurance has a reputation of not delivering, when needed.
BH Getting disability insurance causes much anxiety. When I started the Foundation, 24 years ago, insurance companies were much kinder, more understanding of people with illness. Insurance companies took physicians seriously whey they said, "Look, this patient can't work because of his or her illness."
Starting 15 or 20 years ago, certain insurance companies began gobbling up their competition. The consolidation was so great, that to an extent, there are fewer disability insurance companies, today, than 20 years ago. Amalgamation resulted in three or four major insurance companies. Now, it's often more difficult to get disability and keep it.
This handful of companies decided, as far as I can see, to not pay anyone on disability, [if possible]. We've severe cases, patients who are obviously bedridden. They can't fight; insurance companies simply don't pay them.
Sometimes, it seems, companies offering disability insurance arbitrarily cancel a great many policies. Those patients, who complain, get their disability insurance reinstated. Those who don't complain lose out. On top of being severely ill, these patients, too often, have to fight, and fight long and hard, to get the disability insurance benefits they paid for.
Some disability plans effectively help patients. It seems when the Canadian Medical Association (CMA) takes part, physician patients are better off. Cooperation builds plans in a way the insurance companies can't get out of paying. In other cases, for example, it is my opinion that the Ontario Teacher's disability insurance, devastates teachers, to such an extent, they have to fight four-to-six years before they get any disability back pay. It's an unfair mess.
GS What happens if the patient is a single mother, with two or three children? Everything vanishes. The stress and anxiety aggravate her condition.
BH These are probably the worse off of all M.E. and CFS patients. At the Foundation, we deal with anxiety, daily, that is not caused by chronic illness alone but by the insurance industry.
I feel sorry for anybody who is ill and we can't treat, properly. There are many health problems medicine can't treat. This is also part of the ethos of illness, today. For instance, most people out there think that if they fall ill, there's a magic pill. Patients also believe there's a magic physician ... who can see them, diagnose their illness, give them this magic pill and they'll be back to work.
GS Opinion seems a large part of the problem. Patients, who suffer hard-to-detect illnesses, receive a psychiatric diagnosis. Patients think physicians have magic bullets.
BH Yes, and the fact we are a work-oriented society makes the problem worse. You don't earn much money, in today's terms, by working. For most people, you have to work hard for your dollar and it usually takes two people's income to raise a family today.
Well, it's a myth that there's a magic pill for everything. It's a myth we have some understanding of every disease that we can treat. For instance, we have no idea, today, what causes Multiple Sclerosis (MS). We know it's an injury to the blood supply, of the fine blood vessels going to myelin areas of the CNS. We know that Rheumatoid arthritis is one of those diseases that first occurred after Columbus discovered America. It's still more common among Native North Americans than non-Natives and still less common in Europe. Columbus may have taken Rheumatoid Arthritis back with syphilis to Europe.
We know almost nothing about the cause of rheumatoid arthritis. We know almost nothing about the cause of MS. We know little about whole areas of illness.
GS How does Canada compare with the rest of the world in diagnosing CFS or ME cases?
BH I don't think any one, in any country, is good at diagnosing Myalgic Encephalomyelitis (ME) or Multiple Sclerosis (MS), for that matter. It's better known and diagnosed in the United Kingdom (UK) and England. This is because there's more of vocal activity of M.E. support groups in the UK. However it is one thing to be diagnosed and another to be properly investigated and treated. That is not good in the UK.
The dense population, of the UK, doesn't help. In my own family roots from 19th century UK, tuberculosis killed many of them, from 1850-to-1890. Tuberculosis flourishes in densely populated areas. My great-great grandmother, who married in 1852, had eight children. Two of them survived into adulthood, six died of tuberculosis, usually in their first year or two of life.
The American side of my family are from Alabama. Most died because of bullets in the US Civil War. Not one died of tuberculosis.
MS has a well-known epicentre around the North Sea. Scotland and Northern England have the biggest concentration of MS, in the world. The cause appears to be a long incubating virus, but we've never found what exactly causes MS.
GS MS and, by implication, ME are similar to tuberculosis.
BH I do not think they have a great deal of similarities. At this point, MS shows in northern european populations that have migrated around the world. Tuberculosis today occurs more among the poor in third world countries. Some physicians, especially in the UK, believe M.E. is caused by an enterovirus.
An enterovirus enters the body through the gastrointestinal tract. Polio is an enterovirus, and Coxsackie, too. Any contact, with saliva, say, by an unprotected sneeze, may cause taking in of an enterovirus. Infected secretions stay on public door handles: you open the door and, a little later, put your hand to your mouth and in go the enterovirus. There's much wisdom in washing your hands, often.
At the Foundation, we've looked at Canadian patients, studied their blood in Glasgow, and been able to recover these viruses. There's no laboratory for the average physician in Ontario today to even order an enterovirus test. In this way, controls exist here, but not in the UK.
GS What's a typical day for you?
BH I get up at 5:30 am, each day. I wake up rested, even after an hour or two. If I have a good six hours of sleep, I can take on the day.
I get up, read the newspaper, walk my dog, put away the dishes and then I'm usually in the office by 7 am, working on the charts. I usually finish by 6 pm and sometimes do paperwork till about 8 pm. It sounds like a boring life, it isn't at all. It's rewarding, trying to figure out what's wrong with these patients.
GS That's a long day. Sleep for an hour only. Guess you don't have ME or CFS symptoms.
BH No, I didn't say that. If I'm exhausted, I can immediately go to sleep and wake up in an hour feeling great. At night-time, I usually sleep like a log for five to seven hours.
GS How do you manage to sleep, so well, with your hectic schedule?
BH My workdays are often exciting. You never know when a new patient walks through the door, what in the devil you may find. You don't know if it's going to be a cancer or an aorta that's going to break. You don't know if the patient has an injury from an immunization or what you'll find.
GS I read you are wary of immunization.
BH The results of immunization are something we look at, closely. There was a patient, just this week, injured by a Recombinant Hepatitis B immunization. We've probably seen well over 250 patients injured by that particular immunization.
That's something else. You can't talk about injury by immunization because immunization is next to godliness. In truth, what happens, today, is a third of the people out there would be dead or severely disabled if it wasn't for immunization,. Immunization changed the face of medicine. In a sense, immunization is the most successful the most successful treatment priority that medicine has found. An immunization has saved more lives than any physician has ever saved, but there's some risk even in good things.
Still, you cannot be too critical of this area. Certain immunizations have serious dangers and one of them is the Recombinant Hepatitis B vaccination. When we look at women and men, who've had this form of immunization. Too many present with classic fatigue CFS, if they haven't died already.
We've had five deaths following this immunization. Is that a lot? I don't know. The rate is likely 1 out every 5,000 to 10,000 of those who receive a Recombinant Hepatitis B vaccination. Is this too high? One death is too many, but there's some risk, always, with everything.
When I presented these data to the Canadian Government, in the early 1990s, no one took me seriously. A study appeared arguing there was no basis to blame immunization, in the 65 cases we offered, in evidence. It was alarming. After a little examination, I found the Federal Government fudged the study. No one examined the patients in the study yet the study was published because the Government sponsored it. The government published the study in the Canadian Medical Journal, on two occasions.
GS This is scary. Why would the government tolerate falsified research?
BH I don't know why the government would do this. Was the [researcher] in the pay of the pharmaceutical company? I don't know. What I believe is true is that [the researcher] lied about the research and lied about the danger to these individual patients.
I don't understand a lot about why such events happen. We have seen injuries from immunization and shoddy research, related to CFS or ME. The personality and events are intriguing, in a bizarre way.
GS What was life like for you before medicine?
BH Oh it was great. I was a geophysicist before I was a physician. I went to the Provincial Institute of Mines, in Haileybury, Ontario. It was a great, great school that no longer exists as a mining school.
I worked as a geophysicist, which, in effect, trained me for medicine. When you are looking for a gold, copper or nickel mine, you do layers of technology. You do a map. You do different kinds of geophysical treatments to the land. You induce radio currents and measure the distortion as it goes through the land. In geophysics, you use various tests and techniques. You gather much data, in map form. Then you put these maps one on top of the other, to get a full picture.
Essentially, this is what I do in medicine, today. We put medicines, one on top of the other. In this way, we can pinpoint areas of pathology in the human body.
GS What medical school did you attend?
BH After a brief time, working geophysics, I went to the University of Toronto, School of Medicine. I was one of about 168, mostly men, in the first year of medicine. We were so busy, it was unrealistic.
I was one, of four students, who made time to take an extra course, in forensic medicine. The course ran for a whole year. The crime lab, on Dundas Street, of the Ontario Provincial, was our classroom.
Forensics was astounding. We had all this technology and all these instruments to diagnose who killed whom, and how they did it. I still use the techniques, I learned in the crime lab, to research patients, especially, if we were going to court, with their lawyers, to get their disability insurance. The biggest lesson was never relying on one indicator, of anything.
We never go, to court in the support of a patient without as much evidence as possible. This is where what they did at the crime lab comes into use.
I was fortunate enough to study, in the forensics lab, when Professor Lucas was one of the chief people. He was a professor of the University of Toronto. He didn't have a medical degree or a BA. He'd never been to university.
Professor Lucas taught us never go to a court without three pieces of evidence. This has helped me researching patients, as well. You might call the three pieces of evidence triangulation, which is hard to beat.
Then I went off to the Jackson Laboratory, in Bar Harbour, Maine, to work in biochemistry of transplantation. That's where I met Dr. White. He was another wonderful, capable man, who influenced me.
Dr. White was one of the physicians confirming cigarettes caused lung cancer. He worked at Jackson Laboratory for nine months a year. He gave two months a year to a third world country, to help them conquer disease. He worked one month a year for Philip Morris, which was paradoxical.
While Dr. White was at Jackson Lab, for nine months, he'd publish one or two papers showing how tobacco caused cancer. In those days, the late 1960s, physicians were furious. They'd say, 'How can you do this?' Most physicians smoked.
GS You'd think physicians would know better than to smoke?
BH Yes; they, more than anyone, should understand the deleterious health effects. Medicine calls for much concentration, for obvious reasons. Nicotine, according Dr. J. P. Changeux, director of the neurology laboratory, at the Pasteur Institute, in Paris, mimics acetylcholine, a natural chemical, which helps us concentrate and relax. Although smoking destroys our organs, especially the lungs, it does help us concentrate and relax. Not much of a trade off, but some people accept it.*
GS Back to Dr. White.
BH When White worked, for a month, at Philip Morris, he'd reputedly publish three or four papers showing cigarettes did not cause cancer. One day, I asked, 'Why do you do this?' He said, 'Well, Philip Morris pays me in one month what I earn for nine months at the Jackson Laboratory."
GS This contradicts the basic principles of good science.
BH Yes; I had graduated from the University of Toronto, with the religious notion that science was perfect, that science was better than any religion and it was the religion of the future. I saw what White was doing and I thought, "Oh my god. My gods have been cast down at my feet."
One summer, Dr. White went off to work in India, where he died of an infection. I felt so sad to lose him. Even though he worked a paradox, at Jackson Laboratory and Philip Morris, he was one of the most wonderful people in the world.
GS What did you do after the Jackson Laboratory?
BH I returned to Toronto. I became the Chief Technician, of the Electron Microscope Unit, at Sick Kids. Sick Kids is the Hospital for Sick Children, in Toronto, an affiliate of the University of Toronto. It's a major health care, teaching and research hospital, only for children.
Working at Sick Kids was wonderful. The physicians, with whom I came in close contact, were wonderful. They knew what they were doing; it was a paradise for me. Anyone who gets a chance to work at Sick Kids can only count themselves lucky. As I was working in the crime lab, as I was at working at Bar Harbour, Maine, I've had wonderful experiences, in medicine, and it's always been rewarding.
GS I heard that you had an interesting connection to Anthony Quinn, the actor.
BH Who told you that story? Ha! That was a long-time ago.
In the late 1950s, I was working the North West Territories; west of Eskimo Point, specifically. I was in charge of a geological and drilling team. We were looking at some interesting mineral deposits.
We were flying DC3s on skis, into the area west of Eskimo Point. We needed a big plane because we had to carry enough gas to get there and back. There was no place to fuel in most of those places in the North West Territories.
Fort Churchill, Manitoba, became our home base. We'd fly to Eskimo Point from Fort Churchill. One time, when I got to Fort Churchill, everything had melted and frozen again. I was stranded, for a month.
I didn't drink or smoke. There wasn't much for me to do. My [crew] and some other men were in the tavern breaking their teeth by opening beer bottles with them. There wasn't a whole lot to do in Fort Churchill.
One day, I went for walk. I met an old Eskimo woman. She said she'd make me a pair of mukluks, if I could shoot a seal for her. I got my gun and walked about five or six miles out, on to frozen water of Hudson Bay, to find to an air hole, where the seals were coming up.
It was beautiful, so far out on the ice. When you are on the ice, of Hudson Bay, it isn't white. Depending on the colour in the sky, it is various pastel colours; just beautiful, almost hypnotic.
It was hot, on top of the ice. I had my parka on and I would be watching, with my gun ready. I kept falling asleep. Every time a seal popped up, I woke up, but I'd be too late.
Suddenly, I saw this tank come up about 1000 feet from me. Behind this tank was a jeep. It was an enclosed jeep, with two doors for the driver and the passenger side.
The tank broke through the ice. It had tracks, so it was able to get out of the hole. The jeep, following right behind, went head down into the hole. Only the end of the jeep was sticking out. Just like a duck's tail.
I saw all this happen, in an instant. I immediately started running toward the tank, with my gun in my hand. As I got to the tank, the soldiers were climbing out of the turret.
I was only 23 or 24, but I'd been running men in the Arctic for four years and used to commanding, giving orders. Without thinking, I started commanding the soldiers and I said, "Do you have a chain?" They said, "Yes." 'Well," I commanded, "get me the bloody chain and hook it up to the tank."
I took one end of the chain and hooked it up to the tank. I grabbed the other end of the chain and dove into the water of Hudson Bay, through the seal hole. I hooked the chain to underneath of the front axle of the jeep. As climbed out of the water, I told the soldiers haul out the jeep out, fast. They did. The jeep popped out, of the water, on to safe ice.
Suddenly, I was cold. Ha! I thought I was going to die. I was soaking, from head to toe right down to my skin, and it was below zero water.
I went up to the jeep and asked, "Can you drive me to the shore?" They said, "Sure." I crawled in behind two people I think are Eskimos, sitting in the back. I was just shaking, I was shivering so badly.
I turn to the woman and said, "My name is Byron Hyde." She said, "I'm Yoko Tani." I had seen her in a movie called, "The Wind Cannot Read," and fallen in love with her. She was so gorgeous, and soaking wet. Ha! I said, "It's Yoko Tani. I must be in a bloody dream!"
I turned to the other Eskimo and said, "My name is Byron Hyde." He said, "My name is Anthony Quinn." Well, I hadn't a clue about Anthony Quinn or who he was - "Zorba the Greek" was still a few years off. He and Tani were making a movie called, "Savage Innocents," near Fort Churchill.
When we got to the edge of the water, Quinn and Tani didn't want to drive across the water. Anthony Quinn, who usually played rugged roles, started yelling. Scared stiff and soaking wet, he wasn't the macho man he was onscreen.
Anyway, the soldiers carried him on their backs. He was yelling and crying. I got to carry Yoko Tani, who was half Japanese, half-French.
Later, Tani hired me as the driver for the film company. I had the only free truck in Fort Churchill. I made more money renting the truck to the film company that month than I did on-the-job. It was wonderful. Then a month was gone and I flew up into the Territories and we did the work on that mine.
That's how I saved Anthony Quinn.
GS Wasn't Peter O'Toole in the movie? Was he almost drowned, too?
BH Yes; O'Toole was in that movie. He seemed to stay apart from the others. O'Toole was not ont the ice when the jeep went into the water. He didn't have anything to do with the incident. I think he had bottle and may have been drinking. It was all great times. One day he did get caught on an ice raft and was blown out into Hudson Bay. I was frightened to have almost lost this great actor.
GS You're also a poet. When did you first start doing this?
BH When I was a child, teachers made us commit long poems or passages to memory. I don't have a rote memory. I made up my own poems, to help practice memorization, and kept my own poems, initially. That's how it all started.
Some great poets, such as Dylan Thomas, Hafiz and Mayakovski, influenced me. When I was in grade eight, I was ill, with polio. I was in bed for a whole year. In a sense, it was a most wonderful experience. I got to read for a whole year, and not go to school.
When I started reading poetry, I had the books of Dylan Thomas. His poetry enthralled me. His Welsh way of putting a word with another word is impressive. It was a wonderful time.
I started out mimicking great poets, including Vladimir Mayakovski and Hafiz. In time, I developed my own style. I've published two books of poetry, so far.
GS What do you consider your greatest accomplishments?
BH My four children are my greatest accomplishment. My oldest son Christophe is a geophysical prospector working out of Vancouver. He was diamond prospecting for Rio Tinto. Now, I think, he's doing nickel.
My second son, Christian, is a lawyer, in Paris. He's a telecommunications lawyer, and works all over the world. He was just doing a job for the World Bank in Liberia, last week, and has worked in 41 African countries as well as Central Asia and Central and South America.
Then my daughter, Dominique is Deputy Chief, of the United Nations (UN), in Nepal. She's second in charge of World Food there.
My youngest son is Martin. He's 32, and a painter who succeeded in not working, a day of his life, other than painting. He is a great painter. He has two children.
I got a bit of everything.
GS What are your hopes for the Nightingale Foundation?
BH I'd love to raise $2-4 million dollars. The British government has asked me to come to England. It was suggested that I would get 15 million pounds to set up a foundation, such as I have in Canada, to examine the ME patients, in England.
I told them that number one, I didn't trust governments to come across with money or hire a staff and set up a foundation. I've at least two university students who've offered to house me, but I thought, if I give up my practice here, I can't afford to wait for two years for the money to come or not.
If I had $2-4 million pounds or dollars, I could not only set up the foundation, in the UK until we did get funding. That amount of money would also allow me to come back to Canada and set up at the university here as well to also properly research these people.
GS What are your hopes for the patients?
BH I think my biggest single hope has two parts. First, the medical community must take patients, with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), more seriously.
Second, the tyranny of the insurance companies needs curbing. I consider bullying ME patients, the way insurance companies do, diabolic. A patient worked. At work, he or she paid medical insurance premiums. When the patient needs support, the insurance companies refuse. What happens to a disabled patient whose disability insurer refuses to honour its commitment?
It's usually the men who win the lawsuits. They fight and are more aggressive. They've got more testosterone, which works for them.
Women with children, especially single moms or single, and no one to support them when they are down, well, they give up. They don't have financial support, and that's the point.
If there's a couple, who are both working, the story is different. If either gets sick and the insurance doesn't come through, one wages war and the other words to keep the family going. I do believe that men, because of their aggression and support, with their wife, are in a better position than are women in winning legal actions against insurance companies.
One fact, to keep in mind, when you battle an insurance company for a rightful claim, is you never make it into a courtroom. The insurance company agrees to live up to its responsibility on the steps of the courthouse. It settles the day before you are due in court or the morning of. Insurance companies say, "Okay, we'll pay, but you can't disclose this information." So they protect themselves, even then.
GS Thank you.
* Jean-Pierre Changeux and Stuart Edelstein (2006), "Nicotine Acetylcholine Receptors: from molecular biology to cognition," published by Odile Jacob.
Click here for a list of all Grub Street Interviews
Interviewed edited and condensed for publication.
Melissa Yue is a former reporter for Reuters. She lives in Toronto.
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