What about M.E.? Living with a little known and widely misunderstood neurological disease

By Lori, Undiagnosed, United States, January 5, 2019


What About M.E.?

Living with a Little Known and Widely Misunderstood Neurological Disease

Myalgic Encephalomyelitis Chronic Fatigue Syndrome, or ME CFS for short, is the disabling disease that I’ve been diagnosed with and that has changed my life forever. First, some words about the disease itself. ME CFS is a VERY complex, multi-systemic neurological disease affecting MILLIONS of people around the world. It's a disease that's been in existence for many decades, perhaps a hundred or more years, yet NO ONE, including most doctors ANYWHERE, including the United States, seem to be aware of ME CFS or know ANYTHING about it. More women than men are afflicted with this devastating disease and perhaps that's why it hasn't been given the respect, the attention, or the research dollars it so deserves. Based on its symptoms, ME CFS could be classified as a neuroimmune disease, a neuroendocrine disease, a neuromuscular disease, a metabolic disease, an autoimmune disease, a mitochondrial disease, an immune deficiency disease, and the list goes on and on.

Beginning in the 1930s, there's been several well documented "outbreaks" or "clusters" of this disease both within the United States and around the world. Two such outbreaks occurred in hospitals in California affecting health care workers, and another, more recent outbreak, occurred in Lake Tahoe, Nevada in 1984/1985. In fact, the illness was so alarming the Centers for Disease Control and Prevention (CDC) was contacted and visited the site of the outbreak but nothing was done, in terms of trying to figure out the cause of the illness, and the incident was conveniently forgotten or “swept under the carpet.” Over the years, the disease has been referred to by different names including "atypical polio" and "atypical multiple sclerosis" but the one name, "Yuppie Flu," which was coined in the 1980s, around the time of the Lake Tahoe outbreak, inflicted immeasurable, long term damage since it trivialized the disease and stereotyped the people most afflicted, WOMEN. To this day, the worldwide ME CFS community is still working to repair the damage.

Debilitating fatigue and exercise intolerance are considered two of the "hallmarks" of this disease but that doesn't even begin to tell the story. In its most severe form, those afflicted with ME CFS are bedridden and have such extreme sensitivity to noise, light, and other stimuli they have to be in complete darkness and/or silence. I too suffer from visual and noise sensitivities but they’re not this extreme and improved significantly following the acute stage of my viral illness. In addition to the above symptoms, people afflicted with ME CFS suffer a unique phenomenon referred to as, “post-exercise malaise” or “exercise intolerance.” What this means is that ANY activity or stress, physical or mental, can cause a “crash” which is an exacerbation of ME CFS symptoms, most notably, the all-consuming mind and body fatigue that can last for days, weeks, even months. For the most severely affected, merely walking down the driveway to pick up the mail is a herculean task. They might as well be scaling Mt. Everest. If that wasn’t disabling enough, most people afflicted with this disease, like myself, suffer with cognitive dysfunction, “brain fog,” short-term memory problems, word find difficulties, confusion, you name it. Instead of the term, “brain fog,” I prefer to use the term, “near wakefulness” since it feels as though my brain can’t fully wake up and I remain in this twilight like state unable to perform even the most basic tasks or solve even simple problems. It feels like I’m submerged under water and, try as I may, I can’t make it to the surface. It may be different for other people with ME CFS but at least that’s what it’s like for me. One day, I went into town to run an errand and couldn’t find my way out of a store I’ve been going to for many years. I knew where I was, in other words, I was aware of my surroundings, but I just couldn’t figure out how to get to the exit. The exit could have been right in front of me but it wouldn’t have made a bit of difference. I still wouldn’t have been able to find my way out of the store. It’s kind of like having your brain stuck in “neutral” or like a computer in “sleep mode.” That’s what ME CFS does to you.

Also, it affects my muscles, some muscles more than others. For instance, my eyelids feel very heavy, I experience tiny nerve-like sensations and visible twitching in and around my lips, and, when I smile, if feels like the cheek muscles are stiff and spastic and also twitchy. The more I repeatedly smile, the worse the twitches become. My legs, especially my thighs, become very stiff and often times painful, especially at the end of the day, making climbing the stairs a difficult and arduous task. To me, the stiffness feels like stiffness from overexertion. The blood and cerebral spinal fluid (CSF) of some people with ME CFS have revealed elevated levels of lactic acid which could certainly cause or contribute to the muscle pain and stiffness I experience but I’ve had the lactic acid levels in my blood tested twice and twice the results were normal. Although, I’ve never had my cerebral spinal fluid (CSF) tested so the lactate levels could be high there. I often wonder if the vitamins and supplements I take, which are many, could be affecting some of the test results. I honestly don’t know but it’s certainly possible. Recently, I read that the antioxidant, Alpha Lipoic Acid, which I regularly take, can affect lactate levels in the blood but I’m not willing to come off any of my vitamins and supplements since they are vital to my ability to function each and every day.

Although this disease isn’t contagious, there are many “triggers” suspected of causing the chain of events that lead to the development of ME CFS. Viruses, including the Epstein Barr Virus (EBV), the same virus that causes mononucleosis, Coxsackie Virus, Human Herpes Virus-6 (HHV-6), and Human Parvo Virus B-19 (HPV B-19), are a few of the viruses implicated in this disease. Although, early in my illness, I tested positive for the Human Parvo Virus B-19 and later HHV-6, it was a reactivation of the EBV virus that’s suspected of causing the development of my ME CFS and which sent me to the hospital ER not one but twice and once by ambulance. For others, it may not even be a viral infection that triggers the disease but a bacterial infection, an injury, surgery, exposure to toxins, including mold and chemicals, food borne illnesses, or even Lyme Disease. One woman I met earlier this year, said she developed ME CFS after receiving a blood transfusion during childbirth. Regardless of the “trigger,” one thing is clear. Women seem to be more susceptible to developing this disease in the same way that women are more susceptible to developing autoimmune diseases and autoimmune diseases and numerous autoantibodies are commonly seen in people afflicted with ME CFS.

Some of the commonly seen autoimmune diseases include Sjogren’s Syndrome, Lupus, Rheumatoid Arthritis, and Antiphospholipid Antibody Syndrome (APS). I've repeatedly tested positive for (1) the Rheumatoid Factor, which is often seen in autoimmune diseases, (2) one of the early Sjogren's antibodies, and (3) one of the antibodies for APS. The second condition, Sjogren’s Syndrome, causes dry eyes and/or dry mouth in its most mild form and autonomic dysfunction in its most severe form. I discuss autonomic dysfunction in greater detail later. The last condition, APS, causes hypercoagulated or "sticky" blood and is responsible for causing heart attacks, strokes and Deep Vein Thrombosis (DVT). Another blood abnormality commonly seen in people with ME CFS is misshapen red blood cells which many researchers now suspect is causing widespread pain in a subset of patients that have Fibromyalgia and ME CFS. You see, the red blood cells lack deformability and, therefore, can’t circulate properly into the smaller blood vessels, like the arteries and capillaries, causing small blockages and consequently pain. For years leading up to the development of this disease, I often suffered with unexplained sharp pains in the left side of my neck and around my heart that seemed to “come out of nowhere.” None of the doctors I saw could explain what this was but now I suspect it was due to APS. Misshapen red blood cells are also commonly seen in people afflicted with Sickle Cell Anemia, another very painful condition, caused by the inability of the sickle-shaped red blood cells to deform for proper circulation.

In addition to autoimmune diseases, many people suffering with ME CFS have other co-morbid medical conditions or "co-morbidities," such as dysautonomia or autonomic nervous system disorder (aka, autonomic dysfunction), mast cell activation syndrome (MCAS), irritable bowel syndrome (IBS), Ehler's Danlos (Hypermobility) Syndrome (EDS), and Fibromyalgia, all of which I've been diagnosed with, in addition to ME CFS. The form of Dysautonomia I have is called Postural Orthostatic Tachycardia Syndrome, or POTS for short, and this condition is responsible for some of the most disabling aspects of my disease including orthostatic intolerance, which is a worsening of symptoms upon assuming an upright or standing position. My autonomic dysfunction is widespread and has affected nearly every system in my body causing gastrointestinal and digestion problems, bladder incontinence, frequent urination problems, loss of bowel control, involuntary muscle contractions, involuntary gasping, an exaggerated startle response, poor and disrupted sleep, heart rate and blood pressure issues, respiration issues, and low red blood cell volume or more simply stated, low circulating blood volume. Some of these symptoms could be related to or exacerbated by problems or dysfunction within my endocrine system since this is often seen in people with ME CFS. As a woman afflicted with ME CFS, I have learned that, if you can identify all of your co-morbidities, including any autoimmune diseases, and effectively treat them, you MAY be able to achieve SOME symptomatic relief, as I have, but you need to be extremely patient since it may take years, as it has for me.

Something else I’ve discovered about ME CFS is that you can’t push yourself beyond your physical and mental (cognitive) limits, and, if you do, you will surely “crash” and continue to “crash,” for days, weeks, even months, preventing you from enjoying even a marginal quality of life. Unfortunately, that’s been the hardest lesson for me to learn since, by nature, I’m a “go getter” and have always pushed myself beyond my limits to achieve my personal best. Nowadays, I carefully pace myself and limit any activities, physical and cognitive, and “rest, rest, rest,” in-between to avoid the “push and crash” phenomenon which is so common in those afflicted with ME CFS. Also, don’t waste your precious energy trying to convince anyone, including doctors, and, yes, even loved ones, of how serious and disabling this disease is and how ill you are. Some people will never understand this disease or accept your reality and you’ll just have to come to terms with that. I have. Instead, surround yourself with supportive, loving family and friends, although, this may end up being only a handful of people, and distance yourself from all the rest including anyone that creates drama and stress in your life. I know firsthand the devastating effect stress has on a person afflicted with ME CFS. Avoid it and the people causing it at all costs!

As of today, there's no cure for ME CFS and not even an effective treatment. Through my own exhaustive research into this disease and all of my comorbidities and through extensive and, at times, painful “trial and error,” I’ve developed a daily “regimen” of prescription and OTC medications, vitamins, and supplements, a total of 17 and growing, not including my natural Hormone Replacement Therapy (HRT), that seems to give me some symptomatic relief. My biggest “breakthrough” in terms of treatment was finding a supplement, that was developed by an eye doctor who, along with one of her children, suffers from ME CFS. She suspected that many of the symptoms of the disease, including the autonomic dysfunction, were attributable to low levels of the neurotransmitter, acetylcholine, possibly due to damage to the vagus nerve, leading to an upregulated sympathetic nervous system and/or a downregulated parasympathetic nervous system, and developed a supplement for it. It contains a natural but powerful acetylcholinesterase inhibitor called Huperzine A, or Hup A for short, that prevents a protein from breaking down the acetylcholine in your brain and body. There’ve been studies done on Hup A and the National Institutes of Health (NIH) considers it to be as effective as the prescription medication, Mestinon, but with few, if any, side effects. Mestinon has been used for decades in the treatment of the autoimmune disease, Myasthenia Gravis (MG), whose symptoms seem remarkably similar to some of mine.

So far, I’ve tested negative for any of the “standard” MG antibodies and even some of the more “novel” antibodies. More sophisticated testing for even newer MG antibodies is not yet available through commercial labs in the United States. To my knowledge, only one lab in Germany offers the testing and, right now, the cost is prohibitive, at least to most people afflicted with ME CFS who are unable to work. This supplement also contains a form of choline called Alpha Glycerol Phosphoryl Choline or A-GPC for short, that is purported to cross the blood brain barrier faster than other forms of choline, except perhaps, CDP choline, which are needed to synthesize acetylcholine. Both Hup A and A-GPC have been used to treat Parkinson’s Disease, Alzheimer’s Disease, dementia, and other short-term memory problem in Asia and Europe, respectively. The last two ingredients, thiamine and l-carnitine, provide support for proper neurotransmission and mitochondria, the energy powerhouses of the body. I have no doubt that, without this supplement, I would basically be bedridden and unable to function at anything other than a very low level. Even though the supplement doesn’t appear to improve my energy or eliminate the post-exertional malaise, two very important aspects of my disease, at least it has given me back a small part of my life and for that I’m grateful. Other ME CFS sufferers aren’t as fortunate and remain housebound and/or bedridden.

Even though we're close, there's still no biomarkers for this disease and only recently has the ME CFS research community been able to identify some of the abnormalities of ME CFS, many at the cellular or molecular level. There's a big collaborative research study underway at the National Institutes of Health (NIH) with several universities, including Columbia, Cornell, Harvard, and Stanford, but other important ME CFS research is underway around the world. A metabolomics study of ME CFS at the University of California, San Diego, identified 19 blocked metabolic pathways in people with ME CFS and many of the pathways involved sphingolipids and phospholipids that are involved in neurotransmission and implicated in several neurodegenerative diseases like Parkinson's Disease and Alzheimer's Disease. A recent genetics study by a researcher, associated with the Bateman Horne Center in Utah, identified numerous variants in not only the nuclear DNA but the mitochondrial DNA of people afflicted with ME CFS and many of the variants involved energy, immunity, and autoimmunity. I'm in the process of having my whole genome sequenced, therefore, it will be interesting to see what is revealed in terms of variants and mutations that may have contributed to the development of my disease and co-morbidities.

Based on the worldwide "body of research," there should be no doubt in ANY ONE's mind this is a VERY real and serious disease. As someone living with this disease and, as an ME CFS advocate, it’s important that I educate as many people as possible about this devastating disease. Like others afflicted with ME CFS, I’ve suffered many losses, including my health, my ability to earn a living, a full and rewarding life, friendships, an active social life, and my passions. Yet…I consider myself fortunate since I’m still here “to live another day.” Despite all of my challenges, and there have been plenty, I remain optimistic that eventually an effective treatment, and dare I say, a cure, will be found for those, like me, afflicted with ME CFS who, despite all of our limitations, have found meaning and purpose in a marginal, but not marginalized, life.

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