Many of the posts on my blog revolve around my illness. I have been diagnosed with Chronic Fatigue Syndrome (CFS, or alternately, ME – Myalgic Encephalomyelitis, or ME/CFS), a complicated neuro-immune disease. I also have Fibromyalgia (FMS), chronic Lyme Disease & other tick-borne diseases.
ME/CFS is known most commonly in the United States by the belittling name of Chronic Fatigue Syndrome, and elsewhere in the world as Myalgic Encephalomyelitis.
The CDC (Centers for Disease Control) criteria for CFS are quite broad, and there are several different criteria out there in use by different doctors. Many American doctors have never heard the term “ME” or “ME/CFS.”
In July of 2011, a group of internationally recognized experts came together to develop a new International Consensus Criteria (ICC) for ME/CFS, which was published in the Journal of Internal Medicine.
I’m attaching it here in case you’d like to read it – this is the ICC for ME.
First, a note from the ICC about the name issue:
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
Here’s a taste of what they have to say about it:
Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport, and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.
I more than meet the ICC for ME, which require the patient to have symptoms from several categories, and every other possible cause of my illness has been tested for repeatedly.
By whatever name, it is a devastating neuro-immune illness that involves almost all the body’s systems.
(A small aside to my fellow patients, who are rightfully engaged in a war to get the CDC to adopt the ICC for ME: my blog is my space, and will not be a forum for debate over my use of the term ME/CFS.)
The most popular post on my blog is called We Know The Enemy, Or, ME/CFS/FMS Explained Again. It will give you an indepth look at my understanding of this illness & the course it took in me. In the meantime, read on…
The “fatigue” in “Chronic Fatigue Syndrome” is really quite the misnomer – it is overwhelming exhaustion: too limp, too tired, to move a muscle. Your muscles feel like they are made of lead, and are too heavy to move.
If you have had a really bad case of the flu, and can really remember how awful it was during the very worst day, that is very close to how it feels for most of us, except it is every single day.
The most distinguishing symptom of ME/CFS other than the crushing exhaustion is:
Post-exertional Malaise (PEM):
We patients call this Post-Exertional Hell.
It is as if you have the worst hangover you have ever had, and it lasts for at least a day, usually several, and sometimes for weeks. You ache all over, terribly; are extra exhausted; your throat hurts & you have swollen glands; and to top it off, a killer headache.
What did you do to earn such horridness? You operated outside what is called your “energy envelope” – you spent energy you did not have.
Perhaps you had to go to town for groceries. Or go to a medical appointment. Perhaps you took a phone call & spoke to a dear friend for 15 minutes.
What you have to “spend” is determined by how severe your illness is in general, but also varies day to day, and even hour to hour.
It is very important to note that the energy expenditure doesn’t have to be physical – it is almost as draining to be mentally active as it is to be upright or physically active. I’m in bed right now, but I’m still expending energy.
If you have the time, I have a post explaining the way energy expenditure works for us, as well as for folks with other chronic illnesses. It’s called Always Counting Spoons.
And that is but one symptom of many:
There are more symptoms, but I’m feeling pretty cognitively impaired, so let’s leave it at this for now. I think you should be getting the general idea.
I will try to post some links to some organizations with more information very soon.
People often ask me what the difference is between ME/CFS and Fibromyalgia (FMS).
While this is still being debated in the medical community, the main difference is that people with FMS do not have post-exertional malaise. Usually, they also have less crushing exhaustion.
The general rule of thumb is that if the exhaustion is the biggest issue, you get labeled as ME/CFS, and if it’s the pain, as FMS.
Many of us get both labels.
I am too tired & migraining to get into Lyme & other tick-borne diseases (TBD) right now.
You are welcome to read the letter I wrote to the Social Security Disability folks (still waiting for approval, 4 years in…) as well as the letter my daughter, Rhiannon, wrote, at age 17, to them, about growing up with a severely ill mom.
Thank you for reading!
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