Chronic Fatigue Syndrome Treatment: Hope Lies Ahead

If you’re suffering from CFS (chronic fatigue syndrome), treatment is in order. Recent studies may help you manage this long-puzzling condition.

chronic fatigue syndrome treatment

Chronic fatigue syndrome has long been difficult to diagnose, but recent research is shedding light on the causes.

© Robert Bocian | Dreamstime.com

Studies published in 2015 shed new light on chronic fatigue syndrome (CFS) and, thus, chronic fatigue syndrome treatment. The condition, known medically as myalgic encephalomyelitis (ME), appears to be a biological disorder, not a psychological issue, as determined in multiple studies, including recent work by scientists at Columbia University and the Institute of Medicine.

The new findings prompted—as CBS News put it—a “rebranding [of] chronic fatigue syndrome.” Treatment options, as a result, could become increasingly clear and, researchers hope, effective.

Thus far, CFS has been frustratingly difficult to diagnose. At worst, CFS can become incapacitating for those who experience it. What does it feel like? A New York man in his 40s who developed CFS in 2009 described it like this for CBS News: “…It’s like the worst type of fatigue you could ever feel. If you’re holding up a cellphone, your arm feels like you’ve been using weights for hours, even though you’ve only been holding it for five minutes.”

The condition affects between 836,000 and 2.5 million people in the United States alone, according to the Institute of Medicine (other sources put the estimate as high as 4 million). CFS tends to hit people in their 40s and 50s; women are more susceptible than men.

And it’s not a cheap ordeal. According to the Institute of Medicine report, the direct and indirect economic costs of chronic fatigue syndrome range between $17 billion to $24 billion annually ($9.1 billion of which is attributed to lost household and job productivity).

The Columbia University Study

One breakthrough CFS study appeared in the Feb. 27, 2015 issue of Science Advances. The report indicated chronic fatigue syndrome may be the result of a malfunctioning immune system. According to the research, the immune systems of chronic fatigue syndrome patients appear to be unable to control the response to an infection that has passed.

Instead, according to Dr. Mady Hornig, lead author of the study, the immune system produces large amounts of cytokins. Cytokins are chemical “messengers” that coordinate the response of the immune system’s cell types. Hornig is the director of Translational Research at the Jerome L. and Dawn Greene Infectious Disease Laboratory at Columbia University’s Mailman School of Public Health in New York City.

The immune system of CFS patients “is no longer resilient and able to bounce back after this cytokine surge,” wrote Hornig, “We need the system to be regulated, so it shuts off after the disease is gone, and that isn’t happening here.”

Because of the research, physicians now can look for increased levels of cytokins in the blood of patients who might have chronic fatigue syndrome, potentially aiding in their diagnosis, Hornig said. As a result, she added, “we may be able to reduce the time it takes to get a diagnosis and reduce the time it takes to get treatment.”

The Institute of Medicine Study

The Translational Research study came on the heels of the Institute of Medicine (IOM) report, which in January 2015 summed up chronic fatigue syndrome as a “legitimate illness”—rather than an emotional problem—that should be treated by doctors as a disease. The IOM committee, an independent panel of experts assembled by the U.S. government, wants to give chronic fatigue syndrome a new name, in order to better describe it: “systemic exertion intolerance disease.”

The IOM panel also provided a list of five chronic fatigue syndrome symptoms that define the illness. The first three are “core symptoms”:

  • Impaired ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by often-profound fatigue.
  • A worsening of these symptoms after any type of exertion, including physical or mental exercises or emotional stress.
  • Sleep that does not alleviate fatigue.

A patient with those three symptoms plus one of the following two would be diagnosed with CFS:

  • Impaired ability to think.
  • The inability to remain upright, with symptoms that improve when lying down.

The IOM also noted that a diagnosis depends on the persistence of these symptoms (six months or more) as well as its severity (the patient should experience them in moderate to severe intensity at least half the time).

Chronic Fatigue Syndrome: Treatment and Management

Despite the findings presented by these and other studies, there is still no definitive lab test or biomarker that identifies chronic fatigue syndrome. Complicating CFS diagnosis is the fact that its symptoms can be common to other illnesses. Furthermore, CFS tends to have a pattern of remission and relapse, making it still harder to diagnose.

Even so, experts maintain that any chronic fatigue syndrome treatment strategy should first address the illness’s most disruptive symptoms. Typically, that means tackling the following issues.

Sleep problems: Poor sleep is a symptom—and maybe a cause as well—of chronic fatigue syndrome. Most CFS patients have some form of sleep dysfunction, according to the Centers for Disease Control and Prevention (CDC), whether it’s difficulty falling asleep every night, hypersomnia (extreme sleepiness), frequent awakening, intense and vivid dreaming, restless legs, and nocturnal myoclonus (night-time muscular spasm). Adopting positive sleep habits is key to resolving these symptoms. The CDC says patients should try these eight techniques:

  1. Establish a regular bedtime routine.
  2. Avoid napping during the day.
  3. Incorporate an extended wind-down period.
  4. Use the bed only for sleep and sex.
  5. Schedule regular sleep and wake times.
  6. Control noise, light, and temperature.
  7. Avoid caffeine, alcohol, and tobacco.
  8. Try light exercise and stretching earlier in the day, at least four hours before bedtime, because this may also improve sleep.

If those steps aren’t effective, your physician may recommend sleep medications—initially simple antihistamines or over-the-counter sleep products. The next step, if needed, might involve a prescription sleep medicine in the smallest possible dose and briefest period possible.

Pain: Deep pain in joints and muscles as well as headaches can affect CFS patients. Such pain-reliever medication as acetaminophen, aspirin, or ibuprofen may help, but if they’re ineffective, your physician may refer you to a pain specialist for additional therapy.

“Pain management should also include stretching and movement therapies, gentle massage, heat, toning exercises, hydrotherapy (water therapy for healing), and relaxation techniques,” according to the CDC. “Acupuncture, when administered by a qualified practitioner who is knowledgeable about CFS, may be effective in relieving pain for some patients.”

Memory and concentration problems: CFS patients often report an inability to concentrate along with cognitive issues. Meditation exercises and therapy can help, as well as organizers, schedulers, and written reminders. Stimulating the mind with word games, puzzles, cards, and other activities that require focus also may help.

As for medications, the CDC warns that “health care professionals should use caution in prescribing stimulants for cognitive problems. Mild stimulants may be helpful for some patients, but stronger stimulants can lead to the push-crash cycle—do too much, crash, rest, start to feel a little better, do too much once again, and so on—and cause relapse.”

Depression and anxiety: A debilitating illness may cause depression in chronic fatigue syndrome patients, and while it can and should be treated, it won’t cure CFS. Antidepressant drugs should be prescribed with caution; some types can exacerbate CFS symptoms and produce side effects. There are brief psychiatric screening tools available that can be given and scored in the primary care setting, such as the Beck Depression Inventory. Results of these screening tools may point to a possible underlying depression or other psychological disorder that may warrant a referral to a mental health professional.

Deep breathing, muscle relaxation techniques, massage and healing touch, and movement therapies (tai chi, yoga, or even stretching) can be beneficial for some CFS patients in relieving stress anxiety. (See also our post “How to Stop Depression: What’s Good for the Body…“)

Dizziness and lightheadedness: Some CFS patients also experience what’s called orthostatic instability—a condition by which symptoms, particularly frequent dizziness and light-headedness, are triggered or made worse when a person stands upright. If your physician deems symptoms severe enough to require further analysis, he or she may refer you to a cardiologist or neurologist. Treatments for orthostatic problems include volume expansion for CFS patients who do not have blood vessel or heart disease. If symptoms do not improve with increased fluid and salt intake, prescription medications and support stockings can be prescribed.

Chronic fatigue syndrome treatment, of course, must be tailored to each individual patient’s symptoms. Patients respond differently to various treatment strategies, which is why participation is key: The more involved the patient becomes in his or her treatment, the better chance he or she has to overcome the disease.


Originally published in May 2016 and updated.

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Comments
  • I was diagnosed with CFS in 1987 – before the disease even had a name. I was so ill that all I wanted to do was die. No one understood me, my husband thought I was making it up and my children were upset and confused. They did hire a ‘nurse’ helper who held me in bed when I had anxiety attacks, helped me to the bathroom when I couldn’t walk, brushed my teeth when I could not. I could write a book on this subject…. and finally did when I was better in years to come, but never had the energy to complete it for publication.

    When you suggest a sleep schedule, I have to laugh. You can not schedule any part of CFS treatment. It takes over and is the Boss of your Body. I could go on for hours, but the point I am making is: Don’t make assumptions as to the ‘right’ treatment for this disease – and believe me, it IS real. You have to have experienced it in order to understand and treat it.

    With all my love to those currently living with CFS.

    • Thank you for your thoughtful and informative response. We’re sorry you have had to deal with CFS and hope it’s under control. The “sleep schedule” advice, per the Centers for Disease Control and Prevention, sounds like it didn’t work for you. But we’ll point out that, as we note above, “Patients respond differently to various treatment strategies, which is why participation is key: The more involved the patient becomes in his or her treatment, the better chance he or she has to overcome the disease.” Best wishes to you!

  • I have what I believe to be a mild case. It accompanies several other auto immune problems from which I suffer. I knew someone who told me that she had the really disabling form, like Nancy T., and finally found a homeopathic M.D. who prescribed a compounded something, which brought her back to life. I believe it started with “m”. Unfortunately, the person who told me about this did not choose to spell the word, and it was forgotten. I would love someone to see this reply and let me know what this supplement is/was. When the fatigue sets in, it’s brutal.

  • I am 15 years old almost 16 and I have suffered with CFS for coming up to 3 years. 6 Months before I was diagnosed I spent a week in hospital on oramorph (morphine) just it help with the pain I was in at that point and i could at times still feel the pain. After this I had multiple blood tests and scans to find out what was happening. Within the 3 years of have CFS I lose and regain the won’t to eat. Mum even sometimes forcing me to eat something anything. I even got to the point where I had to drop/leave school at the age of 13 because I couldn’t cope with people, mental, physical and emotional work. I couldn’t even find the energy to get washed and dressed myself. I also had day sometimes weeks where I don’t even want to leave the house. Just as Nancy T said CFS is the boss of your body it takes over and then you can not make a schedule because you didn’t not know how you’ll feel in the next hour let alone the next day or week.

  • I was diagnosed with cfs 5 years ago. I am totally better now. It costed me 200k to figure out how to do it and lots of trial and error. I did something called the Bx protocol. It was a sublingual spray and the ingredients were a secret and won’t tell anyone what’s in it. I honestly don’t believe the Bx made me better. But these guys gave me a doctor and told me what I needed to do in order to get better. Yes I took the spray everyday but what helped (I think) was everything else. I was told to eat only certain fruits and vegetables turned into juice through a vitamix everyday and that’s it. I cheated likenonce a week. Also I had to do colon hydro therapy once a week for a year. I also. Had to use an oxygen generator 1 hour a day. And do a stationary bike from anywhere from 2 to 15 minutes in the morning. And the next and biggest part was, they told me if I stopped taking all of my meds safely once I stopped them all wishing 6 or 7 or 8 weeks my pain and fatigue would turn off like a light switch. So I gradually stopped my sleeping pills for extremely severe insomnia then I stopped my opiates and anti depresssants. Once these were all stopped safely I then endured an hour of sleep a night while detoxing and I told them I couldnt keep doing this and how do I know it will work? Then boom!!!! At week 7 I had my first good nightnof sleep in months and it was 8 hours not 1 or 2 or 3. I was now the happiest person on earth. THey we’re right. In mymopinion the diet fixed my energy and the stopping meds fixed my insomnia which fixed my depression all I had left was super tight muscles and tension headaches. So I bought an arp wave neurotherapy machinenfor 15k. And it loosened every muscle in my body. And now I had zero symptoms. The diet was only high alkaline fruits and veggies and none with lectins all turned into a smoothie through a vitamix. Normally stopping all meds is only done in a hospital by an intensivist. I had the will power to do all this andnit all worked. Now I don’t have to follow the diet as seriously as before but it’s something I have to do forever. Np pain no fatigue and no insomnia and no depression. If this doesn’t work for anyone else then obviously the spray did make a difference. One more time.
    Stop all meds
    Only high alkaline fruits and veggies turned into a smoothie with a vitamix
    Stationary bike in morning
    Do colon hydro therapy weekly for a year
    Also infrared sauna works good too.
    2 to 3 months off all that after you have stopped all non essential meds.
    You should be fine.

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