Chronic Fatigue Syndrome Basics Series #1
"Isn't that just being really tired?" some people will say. "Take a nap -- you'll be fine."
With chronic fatigue syndrome, nothing could be farther from the truth. Chronic fatigue syndrome is a devastating illness that's difficult to treat, in spite of what than the name implies.
Research shows a wealth of physiological abnormalities in people with this condition. Chief among them is dysfunction in the immune system, which is in overdrive all the time. That drains energy and depletes the body's resources. Chronic fatigue syndrome also involves problems with brain chemistry and hormonal balance.
The fatigue of chronic fatigue syndrome isn't like ordinary tiredness. First, it's intense enough to be debilitating. Think of a time when you were so exhausted you collapsed into bed and couldn't move -- it's like that. Second, it doesn't go away with rest. No matter how much people with this illness sleep, they're always wiped out.
Between the chronically activated immune system and lack of restorative sleep, the body becomes so worn out that it has no energy. The sickest people with chronic fatigue syndrome are bedridden and can only sit up for a few minutes at a time, if at all. Even someone with an average symptom load may be unable to hold a job or drive a car.
Also See:
- ME/CFS Basics #2 - Post-Exertional Malaise
- Chronic Fatigue Syndrome Symptoms
- Fast Facts About Chronic Fatigue Syndrome
- Explore the tabs at the top of this page for more information.
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I think it’s also important to talk about what ME is not, which you touched on. It’s NOT idiopathic chronic fatigue that gets better with exercise, rest, etc. The lumping of these things together in the last 25 years plays a very large part in the lack of progress in what you’ve described as “CFS”, and I prefer to call ME. The psychiatrists are about to make an even larger grab for CFS (DSM-5) and we need to take care to draw this distinction every time we talk about it and demand research on ME. The trap we have, at least in the US, is that it’s impossible to get a ME Dx.
Otis: I was just reading this the other day on the “Phoenix
Rising” site just what the DSV-5 proposal would mean:
“Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as ‘just depressed’, it will be a small leap to decide that the patient has “disproportionate and persistent concerns about the medical seriousness of one’s symptoms” and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound.” Scary stuff!
http://phoenixrising.me/?p=5691
Many people have described CFS like having a terrible hangover or flu. CFS sounds and feels a lot like, what people experience, who are going through opiate/drug/alcohol withdrawal, except it’s 24/7. The deficiency of dopamine/endorphins produces the syndrome of intense suffering known as withdrawal. Flu like symptoms; feelings of malaise; joint/muscle pain; problems regulating body temperature; anxiety; agitation; insomnia; nausea; irritable bowel are signs and symptoms of both conditions. And, since I believe that CFS is linked to dopamine/endorphin depletion (much like Parkinson’s Disease) and an inability to restore sufficient levels of these neurotranmitters in the brain, anything that causes a further depletion (exercise, stress, aspartame etc) will only make CFS worse (running on empty). That is why it is so important for people with CFS to pace themselves, or they will find themselves crashing (no dopamine/endorphins; no brake).
I was in the endocrinology dept. of our teaching hospital the other day, getting a blood draw to evaluate my thyroid. I yawned and the (obviously young and healthy) receptionist yawned too, then kidded me about “getting her started.” I laughed and said I had chronic fatigue syndrome, and that was my job. She chuckled and said, “Oh, I have chronic fatigue, too! But that’s just who I am. I hate this hour of the morning.”
I stopped laughing. I dithered for a moment or two, then I replied, “I know, I wish American doctors would start calling it M.E., like the rest of the world. That way people wouldn’t say things like, [mildly sarcastic voice]‘Oh, I’m tired too!’”
Needless to say, we were not best buddies after that.
I’m calling it Myalgic Encephalitis from now on. Enough of this “just take a nap” BS!
CFS has had many names over the years, including in 1956, Benign Myalgic Encephalomyelitis. Here’s a list of the many names or proposed names, for the same syndrome over the last 100+ years. It hasn’t made any difference to the way sufferers have been treated.
http://www.cssa-inc.org/Articles/CFS_names.htm
Concept of Benign Myalgic Encephalomyelitis BMJ 1970
The reports of the 15 recorded outbreaks of benign myalgic encephalomyelitis have been reviewed and in one instance the original clinical data studied. We believe that a lot of these epidemics were psycho-social phenomena caused by one of two mechanisms, either mass hysteria on the part of the patients or altered medical perception of the community. We suggest that the name “myalgia nervosa” should be used for any future case of the functional disorder which present the same clinical picture.
(Acheson (1959) in a review article on benign myalgic encephalomyelitis, enumerated 14 epidemics that he considered belonged in this catergory.)
http://www.jstor.org/pss/20379057
See, how far we have come in all these years! Pathetic, isn’t it?
It’s so hard to know what the right name would be. CFS is ridiculous as a name. At Psychology Today, I wrote about how stigmatizing that is: http://www.psychologytoday.com/blog/turning-straw-gold/201104/the-stigma-chronic-fatigue-syndrome
But it also seems as if people in the UK, where it’s called ME aren’t treated any better than we are. I used to think they were, but now that I’ve met so many people online from that part of the world, it seems as if it’s worse over there — the health system pushes CBT and graded exercise as the cure. You have got to be kidding!
Toni
It’s a good article, and a good follow-up, too. One of the comments put me in mind of when I was, in utter seriousness, told to get pregnant to get over my fibromyalgia. Being unmarried and completely unwilling to have children didn’t enter into it, apparently.
I wanted to thank you for writing How To Be Sick. I’m reading it right now. I’ve been an aspiring yogini for 30+ years, and my feelings of loss and depression around fibro and CFS have made me feel I’ve lost my way for too many years now. Your book is inspiring me to get back on the path, and your advice is very good. Thank you very, very much, for that.
Hi leorising,
I’m so glad to hear that my book is helping you. It just warms my heart to hear this. I had no idea the book would prove to be helpful to so many people. If you liked my posts at Psychology Today, you can sign up to get new ones via email. Some are just about chronic illness, some about Buddhism, most are about both.
Again, thanks for this wonderful feedback.
Warmest wishes,
Toni
Toni,
I’ve also read your book, about 2 months ago. I just wanted to thank you for writing it and relate how it helped
me last night.
I was having a terrible achy day, had to beg off going to a wedding reception I was looking forward to. When I went to bed I picked up your book, opened it at random and read the part about thanking our bodies for trying so hard to help make us well, carrying us through life. I started mentally down that path and within a few minutes was feeling better, more relaxed and able to get to sleep.
Thanks again,
Sharon
Hi Sharon,
It is so wonderful to hear that my book has been helping you. As I read about your not being able to go to the wedding reception, I thought of that place in Chapter 11 on Tonglen practice when I wasn’t able to go to the party I’d arranged and planned for my newborn granddaughter.
I’m so glad that at just the right moment, you opened the book to just the right place. I admit to still picking it up myself to find just the right practice for the difficulty of the moment.
My love to you,
Toni