Not Crazy, Not Lazy
by Elena Greco
January 14, 2018
In 2011 I suddenly and unexpectedly found myself on the floor. I couldn’t get up. I had no idea why. I tried to stand, shaking as though I were bench pressing 200 pounds. My legs simply would not respond. I crawled to my bed, an inch at a time, dragged myself in, and stayed there for three days until I could stand up again. What followed is a story that will be familiar to several million Americans, yet to most will be a surprise.
My Interest in CFS
If you follow me on social media, you’ve probably seen a lot of posts from me with links to current research and discoveries about CFS, the acronym for Chronic Fatigue Syndrome.
You might be wondering why I have such an interest in CFS. So I’ll tell you. I have CFS.
I’ve waited to go public with this for two important reasons. Both relate to stigma. The first is that I was afraid that people who consider working with me professionally might be worried that I would be unreliable. (I am not and never have been throughout the course of my illness; I keep my word, show up and get the job done, as I have throughout my life.) The second is that I was concerned that people might be afraid that they could “get” CFS from me. (They cannot. Regardless of what you believe to be the cause of CFS, or whatever theories you have read online, there is no evidence whatsoever that it is contagious.)
When I was finally and officially diagnosed—after several years of odd, debilitating and progressive symptoms—I said to my doctor, “Some people do get better from this; I think I might be one of them.” If you have CFS, you can be one of them, too.
At this time, I believe I really have to share what I know about CFS and my own path back to health. I know that there are thousands of people out there suffering who either believe that their life is over (it does not have to be) or that they have to wait for the government and researchers to figure out the disease before they can hope for relief (they don’t). My path might not work for everyone—but it also might work for some. Not to share that information is something I can no longer in good conscience do.
In addition, I have run into several people in my profession who have this disorder, too, but suffer in silence because they fear the stigma I mentioned above. It would not be necessary for them to do that if more people were aware of the true nature of this disease. More of us need to be able to admit that we suffer from this disease. How else are we going to learn from each other and help each other recover?
When I was at my worst, mostly bedridden, this disorder annihilated every plan and dream I had. I simply could not do anything but exist and wait for the body to be able to function again. I totally understand why some CFS sufferers have eventually killed themselves. I imagine they ran out of hope. To be confined to bed or your home for the rest of your life, unable to pursue your dreams or have any meaningful social life or work, is simply not a life. It’s certainly not a life I would want to live, and I doubt that many people would want to live the rest of their lives in bed, unable to function. Although I totally support their right to end their lives if they wish, I do think there is hope for them, and I regret that they have ended their lives without having all the information.
And that is one reason I wanted to write this article: I hate for people not to have information that might actually help them, information that could give them hope and the will to do further research before giving up.
There are at least two and a half million people in the US alone who have CFS (often known as “ME” or myalgic encephalomyalitis in Europe). That is a lot of suffering, and it has been going on for a really long time.
(For more information about the disorder, please read my original article about this topic, The Quiet Epidemic: www.elenagreco.com/the-quiet-epidemic.)
I think most people in this country have fully bought into our current medical system, which treats every problem with a pill to suppress symptoms, and don’t look further for answers. While allopathic medicine can sometimes be helpful, it is mostly useless and sometimes downright harmful for a chronic condition such as CFS. I don’t want people to feel hopeless just because our allopathic medical system has not come up with something that helps them. There are other ways of looking at this disease and many ways of treating it. The way that I found works for me and might work for someone else. If it doesn’t work for them, they can pursue their own path; I do believe they can find it.
What Happened to Me
The experience I mention above of collapsing to the floor, unable to stand or walk, happened four times over the course of a couple of years—twice at my office job, which was doing computer work for a law firm at night, where I was often exposed to toxic cleaning chemicals and usually was also under stress or working long hours (I will relate why this is important later on).
There were times when I was essentially bedridden, periods of several days when I could not stay out of bed for more than an hour or so, and times when my brain was affected with cognitive issues that precluded communication or writing. I had some good days, where I had more energy, could think straight and was able to use my creativity, but the bad days began to greatly outnumber the good days, and the condition seemed to be getting progressively worse.
When this first started happening, I realized that I had gradually become more and more exhausted over recent months and just didn’t notice it. During that period, by the end of the week I was extremely fatigued, and spent all or most of Saturday in bed every week. I just couldn’t go any more. By Sunday I felt a little better and by Monday almost like myself, and got through the early part of the week all right, but by Friday, it was all I could do to move, and it was back to bed on Saturday. It turned out that I was suffering from total exhaustion (doctors I saw called it “adrenal insufficiency” at that point), which had crept up on me without my noticing it. The defining feature was that the smallest exertion could result in exhaustion that lasted for days. If I went to bed tired, I woke up not just tired, but unable to get out of bed. I also had a chronic dry, sore throat, which interfered with my singing, and a fuzzy head at times. I had no idea what was causing these things.
The periods of extreme fatigue became much more frequent and more severe. And when I say “fatigue,” I don’t mean “tired.” I mean that at those times I could barely stand up and felt like I had a bad case of the flu. It was an effort to walk a few steps or go from lying or sitting to standing, and my body hurt all over. Sometimes I would start to feel OK again, have a good few days, and do something bold like go for a walk or clean my apartment, and the next day I could not get out of bed, just could not move. I also became unbelievably sensitive to chemicals, and inhaling or being around something toxic (cleaning chemicals, perfume, pesticide, paint) was sure to result in my collapsing again and spending a few days in bed.
The worst part of CFS for me was the cognitive symptoms (brain fog). On bad days I just couldn’t think, couldn’t focus, seemed to have lost my (usually large) vocabulary, creative thoughts were absent, and I had no short-term memory. This prevented me from writing and communicating well or at all. This, together with the precarious state of my energy and stamina, resulted in a lack of confidence in my ability to plan appointments or work in advance, as I never knew what the day might bring. Integrity is extremely important to me, and I would never make an appointment if I weren’t sure I could keep it.
Knowing that I had periods of not having enough physical energy to function, and that there were unpredictable times when I had cognitive issues that limited or prevented communication, reduced my confidence in scheduling things that would start to grow my business. I had been laid off shortly before the most severe CFS symptoms began, and planned to be self-employed until retirement age. The illness was a serious obstacle to that.
Allergies, asthma, chemical sensitivities, dryness of the mouth, throat and eyes, scratchy or sore throat, deep achiness and extreme fatigue were ever-present and became worse over time. The continuous swelling, soreness and dryness of the throat, sinuses and bronchial tubes were devastating to my singing, which was completely on hold anyway due to lack of strength and stamina. The incredible achiness I often experienced took away my desire to do anything, other than to try to find relief. The potential for collapsing unexpectedly made me wary of venturing out of the apartment. I did not want to collapse in public, because I was afraid someone would call an ambulance, and I feared I would be unable to tell them not to take me to the hospital (I temporarily lost the ability to speak when I collapsed), which could have been detrimental to me.
In short, I was either bedridden or homebound, often unable to communicate, and experienced symptoms similar to those of a bad case of the flu for a number of months.
Trauma and Toxins
I have had an unusual amount of trauma in my life, both chronic (childhood) and acute (e.g., a home invasion) and have dealt (successfully) with PTSD symptoms for much of the last 25 years. Please note that trauma is not something that happens to other people, such as military veterans and rape survivors; it happens to all of us to some degree and frequency.
In addition, I had been exposed to a large amount of toxic chemicals in my office jobs for law firms (I worked at night when cleaning occurred and often breathed the fumes for hours) and was poisoned a couple of decades ago in one of them when workers wearing Hazmat suits cleaned the outside of the building with highly toxic chemicals and a problem with the air ventilation system allowed those chemicals into our workspace, where we inhaled them directly for hours (two people were permanently disabled and sued as a result). Already having had allergies and asthma my entire life, I reacted more and more strongly to toxins with each exposure.
I mention these things because both trauma and exposure to toxins weaken the adrenals and the immune systems over time, and I believe that, along with stress and perhaps a genetic proclivity, contributes to the increasing number of people who have CFS.
What It Is
Many people have not heard of Chronic Fatigue Syndrome (CFS)—an unfortunate moniker, since the disease is not about having “fatigue.” It is known by several other names, including Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis (ME) and Systemic Exertion Intolerance Disease (SEID). Europeans tend to favor “ME,” while the US usually uses the term “CFS.”
I find that those who have at least heard of CFS often have misconceptions about it. One response I often get when I mention CFS is, “That’s caused by a virus, isn’t it?” There was a study a few years ago that attempted to link CFS with a virus, but the study was a failure. To date, no link has been proven to exist between CFS and a virus. The symptoms and characteristics of the disease, along with the apparent lack of contagion, would indicate that it is not a virus. I believe this is one reason for the lack of interest in research into CFS. If it is, in fact, an autoimmune disorder, as I strongly believe it is, it is unlikely that any one drug will make a difference for the sufferers of CFS, so there is no incentive for pharmaceutical companies to research CFS.
According to the CDC, “This illness strikes more people in the United States than multiple sclerosis, lupus, and many forms of cancer.” It is an increasing epidemic in our country and the rest of the world; approximately 2.5 million people in the US have been diagnosed with CFS, and since it takes most sufferers about five years to be diagnosed, there are likely at least several million as yet undiagnosed, which means that CFS affects several times as many people as AIDS in this country. And like AIDS, CFS occurs throughout the world.
It has a myriad of symptoms, the most defining of which is an intolerance to exertion, which produces a profound exhaustion after any exertion that keeps many sufferers bedridden for extended periods (hence the “fatigue” in the name), even decades. If a sufferer goes beyond their “energy envelope”—that is, the amount of energy they can safely expend—the result is a crash which lands them in bed for a lengthy period, not because they’re “tired,” but because they quite simply cannot stand up.
Other CFS symptoms are cognitive issues, sometimes referred to as “brain fog” (many physicians believe this is caused by inflammation in the brain), memory problems, fainting, collapsing, chills, recurrent or chronic fevers, chronic sore throat, joint pain, intense achiness and flu-like symptoms, muscle weakness, headaches and more. Some sufferers are completely bedridden; they cannot do even the most basic actions, such as brushing their teeth or feeding themselves, and require home care for years. Others are able to function to some extent, but at a much lower level of production than before the disorder struck. Many say that it is like having a terrible, permanent case of the flu (I second that).
Although there are clusters of occurrence at times, there is no evidence whatsoever that CFS is contagious. You cannot “catch” CFS simply by being around someone who has it in the way that you do a cold. The families of CFS sufferers very rarely have the disease, and given that they live intimately, if the disease were contagious, there would surely be large numbers of family members who “get” the disease. There are not. For example, there was a cluster of women who were CFS sufferers in Florida in the 1970s. None of their husbands or children had the disorder.
There does not seem to be a genuine resolve in the US to get to the bottom of this disorder or to help its sufferers, given the low amount of funding allotted; for example, in 2014 AIDS funding was $2,978 million and CFS funding was $5 million; spending per patient was $2,482 for AIDS and $5 for CFS (see http://www.oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php). There still has been no concerted effort to create a national database of sufferers and their lab results, although cases have been recorded around the country for over 70 years.
Unfortunately, as is always the case, any research will be prompted by the possibility that a drug company can make enormous bucks on a drug that can cure or reduce the symptoms of CFS. That is unfortunate, because I believe it highly likely that CFS will not be “cured” by a drug. Read on for my explanation.
One of the worst aspects of this disease for sufferers is the lack of understanding by others of their disease and the fear of sharing their condition with others, so that they must suffer in silence. The unfortunate name, “Chronic Fatigue Syndrome,” does not help.
A few years ago, a study came out of the UK about ME/CFS; it was called the PACE Trial. The data was falsified and distorted and the science was bad. It was debunked soundly by the scientific community. And yet it persisted. The CDC even carried the study on its website for months, in spite of knowing that the study was false. The study said that if you have CFS, you’re really just “crazy and lazy,” that all you have to do is get yourself some psychotherapy and do some exercise, and you’ll be fine. This was a huge set-back to the millions of people who suffer from CFS who have waited for years for the public and the government to recognize and help them. There IS a mountain of evidence that exercise often causes a worsening of symptoms or a set-back in CFS sufferers. And “thinking differently” about their symptoms does not help them any more than it would help AIDS sufferers to think differently about their symptoms.
Fortunately, due to new public awareness, the lack of information and acceptance has begun to change in the past few years, and the CDC and the US government acknowledge CFS as a disease now. However, there is still almost no funding for research.
We need research and an increase in public awareness in order to get to the bottom of this disease and start to provide real help for people whose lives are devastated. Recognition by the public is half the battle. There are still doctors who do not even know about this disease, recognize its symptoms or know how to diagnose it, and this results in unnecessary suffering and an unnecessarily long time in some sufferers being diagnosed. Pressure on Congress to allocate funding for research and public dissemination of information is imperative. And if you can, please spread the word so that people become familiar with the disorder and its various names, and the fact that it is not contagious.
I am convinced that ME/CFS is an autoimmune disorder, much like MS or lupus, that can be brought on or triggered by exposure to toxins, an illness or severe physical or mental stress. All of the symptoms and anomalies of the disease make sense in that scenario, including the fact that four to five times as many women as men get CFS, which is true of other autoimmune diseases.
In addition, that would explain why people do not “catch” CFS. The few clusters of the disease occurred in a small group that was together in a common location. I feel certain that those people were exposed to something environmentally which triggered their immune system; those who had a genetic proclivity to autoimmune diseases and those whose immune system was already stressed contracted the disease, while those who did not have those things did not remain ill and did not develop CFS. There are clusters of MS, as well, something that has long baffled scientists, since they know it is an autoimmune disease and is not contagious. It makes sense to me that that reflects the same thing—that exposure to an environmental stressor affected some but not others due to individual differences.
Although I still have CFS, I am currently back to working 14-hour days, holding an office job, singing, rehearsing, writing and generally going about my life. I have had to make concessions to avoid a relapse, the primary of which is that I spend Saturdays in bed, and that I have to consider energy expenditure when planning my schedule; for example, I’m careful not to schedule too many appointments or rehearsals in one week, or to schedule too much toward the end of the week. Traveling seems to take an inordinate toll on my energy envelope (lots of walking and stairs), so I try to limit the number of times in a week that I have to make a trip other than the commute to the office job. There are times when I have a bit of a “slip,” and have to spend a couple of days in bed, but I know the signs well enough to take measures to recuperate before I end up in bed. Occasionally I still have brain fog, but I take that as a sign to rest, and once I do, it clears up in a day or two. Aside from that, I am back to business as usual. I seem to get stronger all the time.
How I Conquered CFS
You might be wondering, since the cause and cure of CFS are supposedly unknown, how I managed to turn it around. I’ve been a holistic counselor and healer for many years, and I’ve studied physiology and herbology for decades. That has come in handy. Once I knew that I had CFS, I read every piece of research I could get my hands on. Then I treated myself as an experiment. I would try what seemed to be a logical remedy or treatment for a couple of weeks, and if I noticed an improvement, then I would quit taking it for a couple of weeks and see if there were a difference. If I got worse after stopping the treatment for a couple of weeks, then I started it again for a few weeks, and repeated the process. If it seemed to cause a consistent improvement, it was a keeper. After cycling through a number of different treatments and remedies, I arrived at a few substances and practices that worked for me. I have continued to use those things, and I have continued to improve.
In short, here’s what I found. Antivirals did nothing for me. That, together with the research I studied, led me to the conclusion that CFS is not a virus, or even a retrovirus. Immune-boosting or cytokine-supporting herbs or supplements made an incredible difference, and still do. That, together with the research I studied and the symptoms I experienced, led me to the conclusion that CFS is an autoimmune disorder.
Once I began treating myself as having an autoimmune disease, all of my symptoms got better and I was eventually able to have a relatively normal life.
What initially turned the corner for me was an herb (actually a resin) that has been used medicinally for thousands of years: Guggul. Guggul (also known as commiphora mukul, Bdellium in Ayurveda and mo yao in traditional Chinese medicine) comes from the Mukul myrrh tree, which is a very close relative of myrrh. Its resin, and sometimes the stems, are used in traditional medicine. The form that I found worked the best for me combines resin and stems. I also use tinospora (also known as heart-leaved moonseed, and guduchi in Ayurvedic medicine), along with cat’s claw, star anise and other herbs and nutrients which I’ve found enormously helpful. Guggul is the most essential to my recovery and continued remission, though; it is my primary medicine. In addition, I continued to apply the fundamentals of Ayurveda to my health and my life.
I also learned to manage my “energy envelope.” I make certain I use the energy I do have in order to maintain stamina and strength, but don’t go overboard so that I end up in bed. By walking the fine line of “not too little, but not too much,” I’ve managed to increase my energy over time. I’m not sure I could have done this without the support of herbs and nutrition, though, so I wouldn’t recommend trying this without that support.
Everyone who has CFS will have a slightly different path to health, given constitutional, genetic and environmental differences. I recommend really looking at your complete health profile, then educating yourself about various herbs and nutrients, and then using yourself as a laboratory, as I did. Of course you should have a medical or health professional guiding and supporting you. But don’t expect or wait for traditional allopathic medicine to help you, because it can’t.
If you have CFS, or think you might have it, I recommend that you study some traditional paths to health, such as Ayurveda or Traditional Chinese Medicine, to find one that resonates with you. Then learn the basics of that tradition and apply them to your life. Health isn’t just about removing a symptom of disease; it is about maintaining a healthy state of equilibrium. The more you restore balance to your body and mind, the faster you will heal from CFS. The beauty of these systems of health, which have been safely and successfully used for thousands of years, is both their simplicity and complexity. You do not have to master them or become an expert to benefit from them. You simply need to learn the basic principles and apply them.
Herbs and medicinal plants are a wonderful resource for health. Nature does a brilliant job of incorporating hundreds of synergistic substances in each herb, some of which counteract other substances which, taken alone, might cause negative consequences. For example, green tea contains caffeine, and it also contains theanine, which mitigates the stimulating properties of caffeine. While synthesizing or extracting individual substances from herbs can occasionally be useful, it is usually safer to take the whole herb or plant and is often much more beneficial.
I firmly believe that heavily researched and tested herbs that have been used for thousands of years without negative consequences, along with nutritional support, should be the first line of defense for CFS for now, along with lifestyle changes.
In case you want to know more about CFS, here are a few references and resources:
Elena Greco is a writer, singer, producer/director and integrative counselor. Her specialties as a counselor are trauma and communication; she has a degree in Counseling Psychology/Human Development. As a writer, she maintains a personal blog and has been published in national publications, including Psychology Today and Classical Singer; she has two books coming out on Kindle soon, one about vocal collaborators and one about trauma. She writes about the creative arts, psychology, communication, persuasion, health, social issues, culture and politics. She is founder, producer and director of EGMP, a company which offers a different kind of entertainment, one which actively and uniquely engages both performers and audience, presenting projects that entertain, educate and enliven. EGMP fosters transformation and the expansion of creative energy in both performers and audience, through music, visual art, technology and other creative expressions that expand the senses. Reach her at email@example.com or find her on the web at www.elenagreco.com.