Good Descriptions of ME
1. Severe ME Blog:
http://www.jkrowbory.co.uk/severe-me-and-me-my-story/
Myalgic Encephalomyelitis is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
• inflammation of the brain, spinal cord and neurons
• immune system deficiency and dysfunction
• mitochondrial malfunction (the body’s energy is manufactured in the mitochondria), which leads to muscle failure (including heart failure), and heavy exhaustion
• damage to and dysfunction of the heart
• dysautonomia
• POTS
• dysfunction of the digestive system, including poor absorption
• extreme sensitivity to noise, light and movement
The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly.
2. Multiple Sclerosis: a long-lasting disease that can affect your brain, spinal cord, and the optic nerves in your eyes. It can cause problems with vision, balance, muscle control, and other basic body functions. ... The damage means your brain can't send signals through your body correctly. It's considered an autoimmune disease in which the body's immune system attacks its own tissues. In the case of MS, this immune system malfunction destroys myelin (the fatty substance that coats and protects nerve fibers in the brain and spinal cord). The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States.
2 / My 2 Pager Overview on ME/CFS
Description:
Let's start with the basics. ME/CFS is an autoimmune disease that affects the central nervous system. The medical term for chronic fatigue syndrome is M.E. - "myalgicencephalomyelitis" - which means inflammation of the brain and spinal cord. (The medical term for M.S., by the way, is "Encephalomyelitis Disseminata", meaning disseminated myelitis/inflammation). Since people haven't often heard of Myalgic Encephalomyelitis, I usually tell people, "I have an autoimmune disease caused by a virus that damaged my nervous system."
Though there aren't lesions in the brain like in MS, there are many bio markers for ME/CFS. Patients have low levels of Natural Killer Cells (an immune marker), increased white matter in the brain, elevated levels of inflammation, and impairments in their methylation cycles (an important metabolic pathway that synthesizes key nutrients into energy, among other things). Many characterize this disease as one in which the immune system gets stuck in "on mode", as if the body is constantly attacking itself in a constant state of inflammation. There is also damage to mitochondria, the organelles in cells which create energy, which leads the body to have an inability to make, store, and use energy.
So there are two processes at work: first, your body is in constant immune attack mode. Second, it can't create enough energy to carry out basic cellular, metabolic, and neurologic activities. So simultaneously while your body is in an overactive immune state, it is also in a hypo-metabolic state: one system is running wild, and another shuts down. You are physically exhausted, but simultaneously have a body constantly in overdrive, as if you haven't slept for a week, but your immune system still has to run daily marathons. No wonder it's exhausting!
The etiology is much like other autoimmune issues: people are largely triggered by viruses. What happens is you get a virus, and your body gets sent into an immune state to fight it, which your body then perpetuates and never recovers from. In my case, I was hit by 2 viruses in rapid succession, and also have a genetic susceptibility to autoimmune illness, so that's likely the genetics-load-the-gun, environment-pulls-the-trigger situation that happened to me. I remember the moment the virus hit me with crystal clear clarity. It was like something broke inside my immune system, a fire of pain and inflammation spread, and my body has never been the same since.
An important point that isn't often made is that this disease has nothing to do with being "tired", in the traditional sense of the word; it is a multi-system disease where the body has an inability to make energy on a cellular level. So it's not the same sensation as being tired from not sleeping enough; it's a deep cellular enervation of your body not being able to generate the processes that make it possible to carry out physiological actions like moving, standing up, or digesting complex meals. This subsequently generates dozens of downstream impairments that affect the immune system, neurological functioning, and much more. You can't assimilate nutrients properly, your metabolism can't turn food into energy, and as a result of a constantly firing immune system, you often develop other added conditions -- like I have, with Hashimotos (autoimmune thyroid disease, where your thyroid doesn't produce adequate thyroid hormone). Your body is constantly at peak levels of inflammation, which creates problems in and of itself. It's not a disease of feeling tired; it's a disease of multiple systems in your body malfunctioning to the point where you can no longer carry out the basic physiological processes needed to function. That's why the word "exhaustion" only scratches the surface of what having this illness feels like.
Part of the reason people get confused by this is because ME/Chronic Fatigue Syndrome is grouped together as a fatigue "syndrome", so many people get grouped together who likely don't have the same disease, which can be confounding. The criteria is very vague - essentially anyone who experiences fatigue for longer than 6 months without another explanation for that fatigue can be diagnosed. This leads to a lot of confusion, because someone who is working full time but feels tired from something like, say, a gluten allergy, might get diagnosed in the same category as Whitney Dafoe, who is close to organ failure. These two people don't have the same disease but are grouped together in the category of "ME/CFS" due to poor classification.
Someday this disease will be better defined, and people with true "M.E." will be classified separately from people who have "chronic fatigue", but for now, everyone gets thrown together in one category. What I'm talking about here in this piece is not "chronic fatigue" the symptom, but ME/CFS, the disease.
Symptoms:
Symptoms can be wide and varied, depending on the person, just like any other autoimmune disease.
For me, I essentially feel like I have a high fever/flu all the time. An average day for me feels like I have the exhaustion, chills, and body aches you'd feel on the 5th or 6th day of a bad flu. I also have dysautonomia, and experience 5-6 "episodes" a day of low blood pressure, vertigo, heart arrhythmias, and general dizziness (this is why it's difficult for me to sit up or stand for any extended period of time). My digestive system is very slow and impaired and as you know, I can only tolerate a few foods, which I usually have to eat in mono-meals (one food at a time). My system gets overloaded so easily. I deal with a lot of cognitive fog, and brain processing issues. It takes me a long time to do things because I can only do things in small batches. (So, I'll write for 15 minutes, then have to take a long break, write again for 15 minutes, etc.) I can get some things done this way, but it's a process!
Exertion is incredibly difficult. Your whole body is drained, like being a battery that can only charge to 5%, and it doesn't recharge with rest. It's like post the virus damaging your nervous system, 5% is the maximum it can get to.
I am in bed 90-95% of the day. I have to be really meticulous about planning activities. For example, if I take a shower, I can't talk on the phone that day, because I won't have the energy. When I talk on the phone or work on a project, that's me dedicating my 5% to that activity that day. If I exert myself too much (move too much, speak too much, etc.) my symptoms worsen and I become completely bedbound, unable to move my arms and legs, or able to stand. I get really inflamed and shaky and nauseous, even more than usual. So, I basically fight every day to keep myself from becoming like Whitney, which is what I essentially feel I would be like if I didn't manage things with such precision the way I do. This is why I can't exert myself, even in small amounts - I am always teetering on what feels like my body completely breaking down.
Another way to conceptualize this illness is that it's like being a car with a broken engine and a very small amount of gas. The nervous and immune system is the broken engine, and the mitchondria (energy) is the gas. A normal person starts out the day with an engine that works fairly smoothly and a full tank of gas. When they use up the gas, they go to sleep, and the energy tank refills overnight, and they start the next day.
With a car that has a broken engine and very little gas, as in ME/CFS, your gas tank is usually near-empty, and rarely refills. Occasionally you can go very short distances, but you run out of fuel quickly and easily. Sometimes it takes days or weeks to gain back fuel, if you used it up. On top of that, it's hard to get the faulty engine to work in the first place - so you can't just fuel yourself with caffeine or or steroids or Provigil. That's just the same as putting gas in a broken car - it still won't run, no matter how much gas your poor in it. You need a comprehensive change, that both provides gas, and fixes the broken engine itself...and we just don't know how to provide that fix for this disease yet.
Treatments:
Treatments are essentially conjecture, aimed to treat individual systems (say, the thyroid and adrenal glands, individual digestive issues, etc.) or just to manage symptoms. It's not like diseases where there are clear cut treatments; it's pretty much a shot in the dark, trying to make an educated guess and seeing if it works. It's estimated that fewer than 10% of people recover. A lot of times on the internet people who claim to have recovered from Chronic Fatigue Syndrome didn't have ME/CFS; they had some version of chronic fatigue as a symptom, which they solved with whatever treatment they are peddling on the internet. This leads to a lot of confusion when it comes to researching treatments.
People try many things: immune modulators, anti virals, supplements, alternative medicine, diets. (Some humor: I've met people who went to Mexico to be stung by bees; I have a friend who moved to Arizona to live in a mold free commune; I have a friend who ate only raw meat for a year because a doctor told her the nutrients in it would cure her. People will do a lot of things to try and improve! :) Some people are lucky and something works for them - an antiviral lowers their immune system load enough that they recover, for example. But it's still very early stages of understanding what works for people, and why. In my many years of talking to other patients, almost everyone has the same story of getting a virus and never recovering, but no two people have the same story of what works for them after.
Many ME/CFS patients can't tolerate treatments common for autoimmune disease, like steroids. I think this is because the main source of the problem - a damaged overactive immune system - misfires and overreacts. But, it makes finding treatments very difficult. You literally never know how you're going to react to something. Often you take a medicine and it has the complete opposite reaction (for example, a sedative will keep you up all night, etc.). It's pretty crazy. But, that's what happens when your nervous system doesn't function the way it's supposed to - anything can happen.
I am always trying and experimenting with things, and have been on dozens and dozens of treatment protocols over the years, many of which haven't helped or have made me a lot worse. Different things work for different people. Sometimes, the best thing I've found I can do is just to avoid making things worse.
Knowing what I know about my own body, I think what will work for me will involve things that calm my nervous system, a lot of being careful about exertion, very careful about diet (foods happen to be a huge immune trigger for me), and hopefully I'll be able to find a medicine or intervention that lowers overall inflammation. I research and experiment my way into a combination of things that will hopefully balance my body, as much as is possible for it to be balanced. I haven't found that combination yet, but that's what I'm always working towards, and I pray some mix of hard work, experimentation, and luck will get me there.
Why is it so hard to treat and get better?
There are a lot of reasons why this illness is difficult to treat:
-We don't know what causes it. Though the immune, metabolic, and neurologic dysfunction is clear, we still don't know what the root cause is, so it's hard to know how to treat it. It's very likely that the virus that sets off the disease process is just a "hit and run", so treating the viral cause, while it can help some people, is not often the answer for most others. The damage is done by the time the virus is gone. And even when you do know what's wrong, it's still very very difficult to treat. We don't really have treatments for mitochondrial damage; we don't really have treatments for immune dysregulation. So, the toolkit of medicine is not well equipped to address these issues.
-The damage can be severe and extensive. So many systems are out of balance and don't work properly. You try balancing one and it causes another to go out of balance, because the central system is itself is malfunctioning. Put simply, this illness is hard to treat because it is a multisystem disease that is highly complex -- and complex things are hard to treat.
-Research is a mess. Research is not great for a number of reasons. Patients who are dis-similar are all grouped together - patients who are said to have ME/CFS currently probably have a wide range of diseases and are lumped together because the diagnostic criteria is so vague. There isn't a lot of funding. Existing research is poor. And doctors aren't even taught about this disease in medical school, so it's not taken very seriously. This is beginning to change, which is good, but in general doctors know little about this illness (if they've even heard of it!) In 40 years it will undoubtedly be grouped with other diseases like MS and Lupus, but for now, it is relegated as a poorly understood illness that no one focuses any resources on. For example, Ron Davis has had to use Kickstarter to raise money for his research because it is so hard to get money from the National Institutes of Health.
-Treatments that work for other diseases don't work for this disease. Steroids, immune regulators, and other interventions (even things like acupunture) can have counterproductive effects for this disease. It doesn't follow many of the rules! For example, even though exercise is crucial for many diseases, it is incredibly damaging for ME/CFS. That type of exertion further damages the mitochondrial system and increases nervous system dysregulation, causing a worsening of both the disease process (increased inflammatory cytokine release, increased neurological dysfunction) as well as an increase in symptoms. This is very confounding to people and doctors alike, who often want to suggest common treatments and then get frustrated when it doesn't work for this illness. As a patient, it's really hard, because you're often told to do things you know are harmful to you. It's also frustrating because you want to try things that logically should work, and then you do and it only makes you worse.
-It's just a beast of a disease. There's not really another way to say this -- it's just a terrible disease! I can't even begin to describe the profound and pervasive dysfunction I feel in the way my body functions. The most basic processes - standing up, digesting food, speaking for a half hour - become gargantuan tasks. I know people often mistake this disease as just "fatigue", but I can say with absolute certainty that this is one of the most insidious and disabling illnesses I've ever encountered.
If I ever manage to recover, I am throwing the biggest, most extravagant party in the history of all time! (Many Perfect Woodward's will be served)! :)
How It's Covered In The Media
I wanted to write a few things about reading articles in general. I often hesitate to share many things on this illness because I'm always frustrated by the way this disease is covered in the media. It's hard for me to see it presented with a constant nod to "psychological issues", which is very belittling, misinformed, and such an inaccurate portrayal of this disease. Another issue (and I think you may find this with the YouTube video) is that talking about this disease in general is just very depressing. The people are really sick, the treatments are ineffective, and the disease lacks all the characteristics of other diseases needed for strong and effective social movements: public figures who either have the disease or advocate for it, money (there's a poor stream of funding and charitable giving, for a whole host of reasons), and a clear name, designation, and cause (all of which help people understand a disease and feel like they can do something about it). It also lacks heroic story arcs and inspirational recovery stories that people tend to respond to and gravitate towards. With these pieces missing, it's very difficult for effective media coverage or effective advocacy to gain any traction. I also just feel like it bums people out to hear and read about.
In truth, there just isn't a lot of coverage of this disease that is done with highly effective storytelling - a TED Talk or New Yorker article that gets people really invested emotionally and also educates at the same time. So much of the information out there is poorly informed. There are rarely, if ever, pieces of media that really capture all the complexities of this disease.
In addition, articles rarely cover the many biological findings - the mitochondrial research, the metabolic impairments found in thousands of studies, or what having this disease really truly FEELS like. It never seems to be presented with the full weight of biology behind it, so it gets stuck in people's mind as an illness that "just makes people tired" instead of a auto/neuro immune illness - a multisystem disease of the Central Nervous System that affects every major organ system of the body. This can feel really frustrating, having such a serious disease not treated as such.
I often wait for the "perfect" piece that conveys everything clearly and succinctly - but maybe there never will be one. I hope at least in the pieces I did send, the following is clear: this is a disease in its early stages of being understood. It has unique qualities that make it life altering in every way imaginable. People don't understand it because we never hear their stories because they are so sick and unable to advocate for themselves. It's a perfect storm of issues...a case study in invisible illness.
When people say, "We used to think of AIDS like this", or "We used to think about MS as psychosomatic, 30 years ago"...that's the phase we're living through right now, with this disease. Somehow, even though we go through this cycle historically with so many illnesses, we never seem to be able to see it happening again in the present moment.
I hope somday to write my own piece. I think I can explain this story, and include a lot of these complex and confusing puzzle pieces in one place. I'm continuing to work on it in bits and pieces, as the story unfolds for me. There is so much that can be learned from all of this, not only about medicine, but about compassion and empathy, about resilience, and about strength in the face of uncertainty.
Psychological Impact
You asked how this all makes me feel, so I'll share some of those pieces. For me the hardest part psychologically is being scared it will always be like this. The level of physical suffering is very high and there isn't a lot that alleviates that physical suffering, unfortunately. It takes a lot of endurance, calmness in the storm, and a constant renewal of hope and optimism to get through. It also takes a meticulous amount of trying to figure out what my body needs, and looking for those answers to the best of my ability. I cope mentally with this by alternating between having a lot of hope for my future, and surrendering to my situation as it is, trying to make the best of it. I also fully invest in my recovery, doing everything I can to try and get better.
Another thing I really struggle with is people not believing me. I struggle with the disease not being taken seriously, with living this nightmare and then having people just think I'm "tired". I struggle with this disease not being treated with the scientific and intellectual rigor required to move progress forward, and I struggle being alone, researching these topics and constantly hitting up against the limitations of my own body. It can feel very lonely and overwhelming. I also struggle with the fear that people judge me and think I'm not doing enough, or not trying hard enough...that if I tried more or did what they thought was best, I would be successful in getting better. People who don't have this illness or the experience of having a disease that is hard to treat can't begin to understand what it's like to try and try and try and not have the things that might work in other diseases not work for you. I worry a lot about being misunderstood, that this experience will never translate.
I of course struggle with missing out on life, with being afraid I won't have things I dream of, like a husband, and a family, and an independent life. And just some fun experiences - an ice cream sundae or a cute guy asking me on a date! Basic things that I miss, that I wish I could have had all these years, and that I still hope I can have someday. Getting to be with family and friends. Getting to live the basic elements of life.
But, considering all these things, I cope really proactively. I make job opportunities for myself, I keep my relationships with friends alive despite all my limitations, I keep a sense of humor. I listen to podcasts and audiobooks and am always learning and growing. I am optimistic and hopeful. I fight really hard and adapt even amidst never ever getting a break from feeling this way. So...I'm proud of that! I fight to keep my spirit intact.
Sometimes I put on blinders to the overwhelming situation of this disease, and I just try to focus on my life, my body, what I know about how my body works, and taking whatever steps I can to improve even in the smallest of ways. This helps things feel more manageable, and give me the smallest amount of control. I focus a lot on what I CAN do. And it teaches me lessons in gratitude, endurance, and surrender, every single day.
And I always have hope I can get better. Maybe not all the way, but at least out of the hole I've been in these last few years. I will continue to do everything I can to make this possible. One time a doctor told me that if there was ever anyone that could figure out this illness, they thought it would be me. This made gave me some nice confidence!
-
So, I've written a lot here. My intention is just to share this experience and some of the things I've learned. Please don't worry about writing a long response or saying the right thing in response. My only hope is just to be able to share and that hopefully it helps make my situation a little bit more clear. You're giving me a huge gift just reading what I've written here.
3 / Overview: Understanding ME
ME is a complex, multisystem disease of the nervous system and metabolism. This means it affects many systems of the body: endocrine (hormones), neurological (brain and spinal cord), autonomic nervous system (breathing, heart, blood pressure), and immune system (the way your body handles threats, both to things like viruses as well as to things like foods and chemicals). Symptoms and severity can vary from person to person; it hits different systems in different ways for each person.
The core impairment of ME is that it decimates energy metabolism. We often think of metabolism as a simple term for how fast you burn calories and lose weight, but what metabolism really means is the thousands of biochemical processes your body goes through to make the fuel to function -- the energy you use each day to power your muscles, digest your food, and think your thoughts. For people with ME, this system is broken. For some, it is so impaired that they can't walk, speak, or handle processing light and sound. For others, it is more mildly impaired, and they are able to say, work part time but need to spend half the day in bed or resting on the couch.
How does the system it break? The theory is that you get a virus, and your body goes into "fight" mode, trying to fend it off. Most people get sick temporarily (as people do with the flu), and cells go into a mode where they shut off certain processes in order to protect themselves from the virus. When you are fighting a virus, your body engages all sorts of immune and metabolic processes to keep you safe and fight the invader, and forces you to rest so it can prioritize these tasks. You feel exhausted, nauseous, feverish -- all symptoms of your body fighting this fight. This state is called "cell danger mode". In normal people, this state passes after a few days and they go back to normal. But someone like me, with a genetic vulnerability to autoimmune disease in the family and a dose of bad luck, gets hit and doesn't recover.
In ME, it is hypothesized that this cell danger response state continues. The body never returns to normal energy metabolism, and this has dire consequences. You are essentially in a chronic state of illness, even though the original threat has passed. Imagine how sick and impaired you would be if your body acted as if it had the flu *all the time*.
Without normal energy delivery and cellular function, your entire body suffers. Your organs work poorly - for example, I have dysautonomia, meaning my heart struggles to pump, I get dizzy and weak while standing and I could have a heart rate of 150 just lying down in bed. Your muscles work poorly. They do not get the energy they need to move or to repair themselves when they are damaged. Your brain works poorly. You get brain fog and a variety of cognitive symptoms. Your body is in a constant state of activation and spends the little energy it does have trying to manage everything going on. At the core, you are exhausted. This is not tired or sleepy. You are not lacking in sleep. You are literally metabolically deficient in energy. You are a broken car running on no gas.
Not having proper energy systems can mess literally anything up. Without ATP, you can't generate and modulate hormones properly, so you're thyroid goes out of whack, and your adrenals work poorly, and your menstrual cycle is hugely dysregulated. Without proper ATP, your nervous system goes haywire; you digest food slowly and poorly, your heart and blood pressure are erratic, your liver doesn't eliminate toxins efficiently. In a low energy state, your body constantly feels under attack; your immune system overfires, and you become allergic to foods and medications and chemicals and anything that seems like it could be an invader. Without proper ATP, your muscles don't get the energy they need. It's hard to move and lactic acid builds up quickly and painfully. This is what I mean when I say "everything is affected." People get confused how you can have so many symptoms. The answer is: if you don't have adequate energy production, every process in the body becomes impaired. You feel sick all the time because your body is simultaneously in an inflammatory state, having to deal with multiple dysregulated systems, and unable to generate the energy needed to meet basic demands.
And this is why energy conservation is so, so important. It is in very low supply. If you use up energy visiting someone with an hour, your body then struggles to have energy to digest your food or pump your heart. People with ME have what is called "exertion intolerance"-- and this applies to any action that requires energy output, e.g., talking, reading, sitting and listening, getting dressed, very basic tasks of living. Thus people with severe ME often have to make the wager, "I can't have visitors. I need that energy I would use to speak and stand up to greet someone for the basic processes my body has to do today, like digesting food, and breathing." That's the calculus. That's why I am so micro-managey. If I overdo something, or even if I just do something, I could face hours or days or weeks or forever of increased symptoms. Or just collapse afterwards from overexertion. If I stay up too long talking or move too much, I crash, and have to spend days or weeks on complete shutdown to recover.
It's very hard. You want to participate and see everyone, but your body is in survival mode. It forces you to be alone and dependent, even though you don't want to be alone, and you want to be independent, and you want to do a million things and spend time with a million people. But you are physiologically incapable of generating the energy needed to do those things. You have to rely on people to help you do so much because you can't do them yourself. It's like trying to draw money from a bank account that is empty.
-
I like using analogies so here are two analogies I find helpful:
1) Battery Analogy
Imagine you are an iPhone (or an Android phone :). You, a healthy person, wake up each morning after sleep fully charged. Throughout the day you use up your energy on various tasks. When you eat, or take time to rest, you recharge your battery. At the end of the day, you go to sleep, and you fully recharge to start your next day with a full battery.
People with ME have broken batteries (aka a broken energy creation and repletion system). I wake up with about 5% battery charge. My body is only capable of generating 5% worth of energy. I'm already in the red before my day even starts. I can't do any activity that exceeds 5% -- in fact, I have to carefully monitor everything so that I budget correctly. Just basic activities like showering or sitting up take bigger percentage points. Most of the time, I just have to be laying in bed, and not doing anything hugely energy consuming. If I have something, like a phone appointment, I save up my energy for that. If I have to shower, I save up energy for that. Walking down the street? That's 10% battery; my body can't do that, not even on my best day.
Even being very careful, it's not a perfect system. Sometimes unknown things take your energy, like a heat wave or getting a cold or eating something that doesn't sit well. As you can see, managing it becomes a huge task. You are already in the red and you are fighting not to overdraw. In addition, the battery recharges *very slowly*. Sometimes sleeping doesn't recharge it, and you wake up with 3%, or 1%. Those days are really hard.
It's a precarious system too. If you overdraw, you can break the phone altogether, or you can lower your battery threshold permanently from 5% to 3%. This is what happened to me after Katie's visit, and can happen after any "overexertion". This happens over the course of the illness where you are at a certain level then something happens and your threshold goes down. For example, I first got sick after getting a virus. Then I got a second virus a year later and my threshold went down -- that was the one that forced me to come home from college in Boston.
Healthier people have higher battery thresholds. For example, when I was at Santa Clara, I had a battery of about 60%. I couldn't walk a long distance or stay out late - I had to conserve a lot still, but my threshold was higher and I could do more. The goal in getting better is to increase this battery life, and get to 25%, of 50%, or even higher. But even if this happens, a person in ME will always have a "broken battery" that loses charge very quickly and doesn't function well, so will always have to be careful. And if you overdraw your energy bank account, or get hit by another terrible virus, you can easily chutes and ladders back down to 5%, like how it's easier to break a bone if you've broken it before. This is, as you can imagine, very anxiety producing. You always wonder and fear if something - an activity, a food, another virus, too much stress - will trigger a permanent worsening.
2. Factories Analogy
Another way of understanding energy limitations and cellular metabolism is to think of mitochondria in cells like factories. Imagine your body is run by thousands of factories, which make up your metabolism. A normal person's factories are up and running, and have a full staff of workers and highly oiled machinery. All the factories in their body work efficiently and effectively. Athletes have kick ass factories. Kelly, who can eat a bag of flaming hot cheetos and then go to 2 soul cycles classes, has kick ass factories :)
A person with ME has many problems with their cellular factories. After the virus hits, it takes out the factories like a bomb, and the ones that come back on board work terribly. The factories are slow, and there aren't many workers. The workers who are there are *very lame* and very bad at their jobs. The machinery they use is damaged. They can place occasional "energy orders" but are extremely inefficient. This is what is meant by "mitochondrial disease" -- poorly functioning energy factories.
Even more importantly, the materials they need don't get into the factories. When a healthy person like you eats lunch, your body takes your lunch and breaks it down into amino acids and delivers it to your cells for energy. My body doesn't do that well at all. Researchers in ME describe energy "not being able to be delivered into the cellular factories". What that means is I eat a meal and you eat a meal and you get tons of nutrients into your cells and I don't. Then, because my cells don't have the nutrients they need, they don't work well. Viscous cycle. This is why I need to do IVs and shots of vitamins and nutrients. When it goes right into my blood stream, it doesn't have to go through the many steps of being digested and broken down and delivered (all very energy consuming), like food or a supplement. It can be absorbed better. It still doesn't get used by the factories well, but it's better than delivering huge packages of food that aren't able to be broken down and used at all.
This also explains why so many treatments don't work. Since the metabolism is impaired, it cannot break down and use medications well. The body gets overwhelmed, unable to process it, and ends up getting even more sick, like forcing a broken car to drive with bad quality gas, ending up damaging the car even more. Wheels fly off and the engine steams and you're left worse off than if you'd just left the car alone. Every ME patient I've ever met is sensitive to medications (and foods) because these things are so demanding on the body's metabolic system. This is why you have to approach treatments incredibly carefully.
The most critical rule is to be cautious, because if you do something that makes you worse, you may never rebound from that. This has happened to me with many treatments and it is very difficult and disheartening. This is also why I research so meticulously and am so careful. Some illnesses have leeway and you can try experimental things to test out various hypotheses and rebound and try something else. Not this one. It confuses people why someone sick wouldn't go off and try a million things - "Why not try anything that could help?" - The answer is that many things can make you worse beyond a point of recovery. Because we don't fully understand the disease process, it's a dangerous gamble. Many patients I know who are the sickest became fully disabled after a treatment that made them worse.
New research is exciting and important. There hasn't been a definitive blood test because this is not the type of thing you can test for in a routine blood screen. However, now doctors are beginning to look at *metabolic* tests (called metabolomic testing), and those have come back showing tons of abnormalities. They show the ways in which this metabolic process is broken, in the citric acid cycle, the methylation cycle, and the pyruvate cycle (these are all metabolic pathways). Nutrients aren't getting into cells. Cells are not producing ATP (energy) properly, and your body ends up running on metabolic pathways that are really inefficient and create a lot of toxic byproducts, which make you feel very ill. As a result, the entire metabolism of the body is impaired. Nothing works well. Lots of illness ensues. The goal is to fix this metabolic impairment. This is very hard, and no one knows how to do it yet, but the first step is understanding it. We are in the beginning stages of that first step.
Another thing they are studying is that cells are in a "dauer" state. This essentially means people with ME have cells that are starving - for nutrients, for energy. The cells are like goldfish out of water, straining to breathe and not able to get what they need to survive. As you know, anything starving is exhausted, low on energy, and in "survival mode." This is happening at a cellular level in ME.
So if you're ever wondering how someone with ME can be so limited, this is why: it's because they don't have the fuel or factories in place to function like a regular person. It's not being tired or "fatigued" and being able to push through it if they really had to. It's literally that your cells don't produce the energy needed to power your muscles to move, or to give fuel for your brain to process information while someone is talking to you, or to get enough blood through your heart while you're standing upright. You body is constantly under siege and you live for years on end feeling like you have a combination of the stomach flu, a fever, and jet lag. This is why the body demands bedrest, because it cannot metabolically sustain other energetic activities. You end up having to treat your nervous system kind of like a newborn baby - lights off, not a lot of noise, tons of sleep, easy to digest simple foods, staying as calm as possible. Place as few demands on the body as possible so it can sustain itself on 5% battery. Prioritize basic needs of the body.
So that's my breakdown. When I describe my illness to people, I usually say, "I got a virus that damaged my nervous system." I also say, "I have a disease that impairs my metabolic system; my body doesn't produce energy properly and that causes a lot of downstream problems." It's hard to capture it all, but that's the best I've come up with. I'm still learning how to explain it well and not always sure what resonates with people.
My main wish is that people understand it's not a disease of fatigue or tiredness; it's a metabolic impairment that causes widespread nervous system dysfunction. It's a longterm disease of the central nervous system and how it functions. I may not be able to figure out how to treat it right now, but I do hope to figure out how to change the way people understand it.
Some day in 30 years, there will be language and tests for all of this.