FAMILY TREE
A NOTE ON CHRONIC FATIGUE SYNDROME
A younger version of me used to hear people talk about Chronic Fatigue Syndrome and think, “Yeah. So? I’ve been really frickin’ tired before too.”
Then, at the beginning of 2023, I found myself bedbound. Unable to think. Incapable of holding a conversation or watching TV.
‘Fatigue’ is a woefully inadequate descriptor for this profoundly debilitating disease.
We’ve all been really frickin’ tired.
Not all of us have been completely disabled by it.
Let’s start with some dreary data:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction
The late William Reeves, MD, former head of Viral Diseases at the CDC said, “The level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure and chronic obstructive pulmonary disease.”
According to Yale Medicine, 75% of ME/CFS patients are too ill to work, and a quarter of patients are unable to leave their homes or, in some cases, their beds. Some physicians caring for ME/CFS patients say it’s one of the most disabling illnesses they've ever seen.
836,000 to 2.5 million Americans have ME/CFS. At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point in the disease and most never regain their pre-disease level of functioning.
To date, research into ME/CFS has been dramatically underfunded. One paper suggests the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. The authors of the papers also found that to be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.
If you’d like more information on the signs and symptoms of ME/CFS, start here:
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
https://www.cdc.gov/me-cfs/signs-symptoms/index.html
In my personal experience, receiving a diagnosis was difficult, as there isn’t a test to confirm ME/CFS. It’s more a diagnosis of exclusion. There also isn’t a known cure, and when a strongly independent woman suddenly finds herself unable to drive to her own doctor appointments hears something like that, it can be a tad disheartening.
However, under the supervision of my doctor and specialists, and with the damn near heroic support of my husband, I’ve come a long way, baby.
Between physical therapy under the careful eye of a specialist, slowly increasing my activity level (at one point, this meant adding 10 minutes of writing or reading every week or two), overhauling my diet and supplementation, and embracing therapy even when it brought up things I didn’t like, I’ve completely overhauled my life.
A year ago, I couldn’t drive. I couldn’t walk to the end of my street. I couldn’t follow the plot of a television show. I spent my days in bed, away from my husband and children, deeply lonely and completely dependent on others.
Now, I’ve driven to other states. I’ve written a book. I’ve gone on bike rides and started jogging—then stopped, because yuck! I’m learning French and how to play the guitar. I’ve made two quilts and some terribly misshapen pants.
I can’t say I have my life back. There are too many changes to say that.
But I have made myself a new life.
And it’s a good one.
The people who consider themselves cured of ME/CFS/long COVID recognized they wouldn’t come through this without profound change, both internally and externally.
Diet.
Exercise.
Medication.
Supplementation.
Breathwork.
Meditation.
Spirituality/religion.
The removal of toxic people.
Therapy.
Recognizing limitations.
If you are suffering from cfs, long Covid, or this strange assortment of symptoms that no one understands, you can live again. You’ll have to fight for it. You’ll have to change for it. But you can do it.
There are places on the internet that talk about this disease as if it will forever hold you back. They say there’s no cure and will fight anyone who claims otherwise.
Stay away from those places and listen to the recovery stories.
After all, you become who you surround yourself with.
