Myalgic Encephalomyelitis also known simply as ME, is more than just being tired all the time. It’s a complex illness with multi body system involvement. It is the total dysfunction of the cells, immune system, and nervous system. ME is a total haywire malfunction of the body and overreaction to mild stressors.
It is impairment of normal function
The best way I have ever heard it described is by ME/CFS advocate Dr. David Bell as a “slow, chronic sepsis.” Severe ME patients have also been compared to AIDS patients in the weeks before their death. Let that sink in for a while.
When diagnosing ME, all other possible diseases that could cause similar symptoms are ruled out, and the patient has to meet certain criteria/ have certain symptoms. This criteria includes (written with help from the IOM diagnostic criteria from the CDC):
- Fatigue– Fatigue that is profound, not the result of excessive or unusual activity, is new onset (not life long), and not substantially alleviated by rest.
- Cognitive Impairment– having trouble processing information, remembering things, inattention to detail, inability to maintain attention on any certain thing, and impaired psycho motor functions. We often refer to this as “brain fog”.
- Dysautonomia– abnormal function of the autonomic nervous system which causes a disregulation of body temperature, heart rate, blood pressure, temperature, perspiration, thirst, and excrement. Many people also experience nerve pain and sensitivity, and extreme sensitivity to any light and sound. This also includes shortness of breath.
- Orthostatic Intolerance and/or POTS– Unable to maintain an upright posture, and having heart rate or blood pressure abnormalities when standing, including light headedness, fatigue, fainting, headaches, and nausea.
- Unhelpful Sleep– Despite sleeping through the night people with ME/CFS rarely feel “rested”. Many do not sleep through the night at all and suffer from bouts of insomnia, probably from the dysautonomia.
- Substantial Reduction or Impairment of ability– Unable to complete activities easily done before onset of illness like washing hair, doing dishes, walking to the bathroom, etc.
- Flu-like Episodes- Many people with ME experience days where they feel as if they have the flu or a fever, including body aches.
- Pain- ME is often accompanied by Fibromyalgia and other autoimmune disorders causing a great deal of pain.
- Other Common Symptoms–
- Headaches of a new type, pattern, or severity
- Swollen or tender lymph nodes in the neck or armpit
- A sore throat that is frequent or recurring
- Chills and night sweats
- Visual disturbances
- Sensitivity to light and sound
- Allergies or sensitivities to foods, odors, chemicals, or medications
Post Exertion Malaise
Perhaps the most telling symptom that differentiates ME from other chronic diseases is exertion or stress intolerance. Each person with ME/CFS has a threshold of what they are able to complete and or handle in a day. This includes physical and emotional stressors. If they exceed that threshold they end up with a severe flare or crash, which is a heightening of all of the symptoms listed above. Typically to an extreme. It’s a full out systemic retaliation. Many patients end up in the hospital for a few days because of the severity.
So what exactly does that look like on a day-to-day basis?
I was always a very active person. I played sports, I traveled the world, I went boating and hiking with my friends. I would get tired but nothing compared to how I feel now. I remember what it was like to feel healthy, and that is perhaps the most painful part of it all. Before the full onset of this disease (I seemed to have a slow onset) I was still able to complete an hour of daily exercise, work full time at my job as a health educator, and do things with friends. Then my body just, totally broke. I got really sick, and have not been the same since.
In the beginning period of my illness onset I could not do anything for more than two minutes without feeling close to death for 24+ hours. I couldn’t understand what was happening to my body and I threw myself into my work and exercise which made my illness much much worse. I thought it was my thyroid, perhaps anemia, perhaps diet. I tried everything. EVERYTHING. Joined support groups. I told them I couldn’t do anything including walking for more than a few minutes- and that’s when someone mentioned ME. It wasn’t long after that I finally received the correct diagnosis.
These days I tiptoe around my abilities like eggshells, still learning where my threshold is trying to avoid crossing it. I try to spend my days doing things I enjoy like art and music to dull the pain of being incapacitated. Sometimes I cross my threshold on purpose. Not to ever do anything doesn’t really feel like living, and I would rather die early having lived a full life than living in a cage. You have to forgive me when I cancel plans, don’t return calls or texts. I probably feel as if I am dragging my body through neck deep mud and just can’t do another thing. Anyone have any good suggestions for Netflix shows? ha.
Like many illnesses, the severity varies from person to person. I am considered a mild case, but I am unable to work full time and can only participate in mild activity, typically for a couple of hours a day. If I do more than that there is severe systemic retaliation. People with severe ME live with the systemic retaliation 24/7.
What is it caused by?
It is currently unclear the exact cause of this severe illness, but most cases are caused at least initially by a virus of some sort, typically the mono (Epstein Barr) virus. In these cases patients will come down with an illness and never recover. Then develop the other nasty symptoms.
Why have I never heard of ME/CFS before?
Because people who have it are typically severely disabled and are unable to go to the doctor. When someone with ME/CFS goes to the doctor they are given every test known to man at this time, all of which come back normal because there is no reliant testing to show what is going on with us. The only reason anyone knows about it now is because there have been medical professionals with family members who have been effected or died from the illness. Sadly that’s what it takes to get the medical world to pay attention to us.
Why term Chronic Fatigue Syndrome just doesn’t cut it
When I hear the term Chronic Fatigue Syndrome, I roll my eyes. Yeah I’m tired all the time, but it’s so much more dynamic than that. I think a more accurate term would be “near death syndrome”. There is a lot of misconception around this term in the medical world also. Patients are often told they have “Chronic Fatigue Syndrome” when a doctor can’t come up with the correct diagnosis.
Before you suggest we try _____ READ THIS
Many of us are desperate to feel better and are willing to go some pretty interesting lengths to get there. I have spent hours researching along with thousands of dollars on anything and everything with even a glmmer of making me feel like a normal human being again. Myself and many of my other chronically ill friends have seen what feels like hundreds of doctors and subjected ourselves to numerous conventional and non-conventional treatments. Some of these treatments include harsh drugs like antibiotics, antivirals, antimalarials, blood thickeners, and stimulants. We have tried various kinds of diets such as vegetarian, vegan, gluten free, dairy free, autoimmune paleo, keto, healing leaky gut, and candida cleanses. We have had blood infusions, red light therapy, tried homeopathic remedies, coffee enemas, mold removal, parasites, hyperbaric chambers, stem cell therapy, and so much more. For years it has been treatment after treatment, supplement after supplement. Time and money we will never get back.
There are some supplements and treatments that can actually be helpful, but it’s usually different for every person and still requires a large amount of research, trial and error. To find these helpers we often have to do a bunch of research and interview other sufferers- probably not something the average person trying to help is willing to do. After vigorous searching I have found several supplements that actually me help quite a bit (you can see what I take here), but nothing has eradicated of my ME/CFS completely.
So, and I mean this in the nicest way possible, unless you are also a chronically ill person, a doctor studying ME/CFS specifically, or God, we really don’t want to hear what remedy you have that will “cure us”.
To Sum it Up
I realize this is a long post but I hope it gave you some insight into what ME patients like me experience on a daily basis. It’s not fun. So, give your nearest sufferer a hug, tell them you love them. Send them this post so they won’t feel alone.
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