In the mid-1980s, two outbreaks of what appeared to be infectious mononucleosis appeared in the US. Unlike typical mono, which caused exhaustion for a few weeks, people with this type were left in a permanent state of fatigue, with low-grade fevers, swollen lymph glands, muscle aches, and poor focus/concentration. In some cases, the fever and lymph gland swelling subsided, but the utter exhaustion persisted. Because most of the affected people were in their 20s and 30s, the press dubbed this new illness the Yuppie Flu.
The medical profession couldn’t find a cause for the symptoms and named it Chronic Fatigue Syndrome (CFS). They also realized it was virtually identical to a condition called myalgic encephalomyelitis (ME), which had been described in the UK 30 years earlier.
Unfortunately for everyone, patients and physicians alike, years of research have revealed no single cause for CFS-ME. This means there have been no consistent positive lab test results, imaging scans, biopsies, or treatments. It also meant that patients experienced the same reception that was going on with fibromyalgia (Controversial Diagnosis #1): unproductively dismissive attitudes by physicians, employers, insurance companies, and even family members. In short, it was difficult to get people to take CFS seriously.
Through a twist of logic, if no one could find anything wrong then the thinking was that somehow the patient herself must be responsible for her condition. Sadly, survey after survey among CFS patients revealed they experienced everything from cold indifference to downright hostility from the medical profession.
The DePaul study
Now, almost 40 years after the first articles about CFS appeared, there’s been some marginal progress. Importantly, at least 75% of physicians actually believe CFS exists, though only about 20% actually feel comfortable treating it. On learning their diagnosis, most patients hear, “Yes, this seems to be Chronic Fatigue Syndrome, but we don’t know anything about it and I can’t treat you. Maybe you should try Mayo Clinic.”
But when patients call Mayo (as many do), they learn that it will not accept patients with CFS, fibromyalgia, or chronic Lyme disease. I’ve asked Mayo’s intake department about this and have been told that they really have nothing to contribute beyond what can be done in the patient’s own city.
The single largest study on CFS began in the late 1990s, conducted by DePaul University researcher Leonard A. Jason, PhD, himself a CFS sufferer. With a large staff, a generous government grant, and a steady flow of CFS patients from several physicians (including me), Dr Jason’s team was well positioned to investigate CFS. Their conclusions pretty much still hold up today. Basically, there’s no consistent cause for CFS, although most cases (but certainly not all) occur after a severe viral infection, especially one that happens when the patient is in the midst of other physical and psychological stressors. I was really pleased to learn that Dr. Jason has received more grant money to study chronic fatigue syndrome. You can read all about what his DePaul team is working on in this week’s Chicago Reader.
In the DePaul study, some patients responded to a form of psychotherapy called cognitive behavioral therapy (CBT). Some improved after undergoing a program of steadily increasing exercise called graded exercise. Later studies raised doubts about graded exercise because some patients actually got worse. Better results occurred when CFS patients learned to pace their exercise. This meant doing something physical but then resting, often for days, before trying to do it again.
CFS patients learn this early. If they push themselves too much on Day #1, they totally crash on Day #2. This necessity to pace physical exertion was so pronounced that CFS recently was officially renamed Systemic Exercise Intolerance Disorder.
Insurance challenges and becoming well informed
Because of the inconsistency of both diagnosis and treatment, getting insurance to pay for anything related to CFS can be challenging. Patients also discover that trying to get help from disability insurance (whether a private insurer or the federal government) is even worse. I’ve had patients on disability for CFS who were followed and videotaped by detectives in an attempt to disprove their fatigue status. One company tried to cancel benefits because they’d filmed a CFS patient walking her dog.
If there’s a plus side to any of this, it’s that many patients diagnosed with CFS become highly proactive about their condition. Between Dr. Google and online support groups, the majority are well informed about CFS, often more so than their doctors.
What they learn on their own is that there’s more than the original post-viral, run-over-by-a-truck CFS. Having CFS may involve genetic susceptibilities, environmental factors, psychological issues, sleep disorders, other infections, nutritional deficiencies, and hormone imbalances.
With this array of ancillary possibilities, it’s unlikely there will ever be a single cure for CFS. However, the chances of recovery are much better when a patient cultivates being healthy and staying in the best possible shape. This means clearing any other infections or toxins, eating a healthful toxin-free diet, and correcting hormone and nutritional deficiencies.
A list of steps that should be taken as part of evaluating and treating CFS
Check for and treat the following infections, which have been linked to CFS.
- Chronic Epstein-Barr virus
- Chronic HHV-6 virus (a herpes virus)
- Chronic XMRV virus (mouse leukemia)
Follow up Ask your doctor if you should consider antiviral therapy.
- Chronic chlamydia pneumonia
- Chronic Lyme disease and other tick-borne illnesses (Bartonella, Babesia, Ehrlichia)
Follow up Ask your doctor if appropriate antibiotics are needed.
Follow up Ask your doctor if antifungal meds are needed.
Follow up Ask your doctor if antiparasite meds are needed.
Note #1 It’s especially important to rule out chronic Lyme. Diagnostic tests have improved considerably over the past few years. What might have once been viewed as CFS-triggered mono may have actually been an episode of acute Lyme disease.
Note #2 If your doctor is reluctant to prescribe medications for any of the infections listed above, there are natural remedies that a functional physician or naturopath can share with you.
Also check for and treat:
- Immune dysfunction (low NK/natural killer cells). This immune dysfunction, which does not affect all CFS patients, has its own diagnosis called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).
- Nutritional deficiencies (vitamin D, vitamin B-12, magnesium).
- Endocrine deficiencies (especially adrenal/thyroid fatigue).
- Undiagnosed sleep disorder (sleep apnea).
- Mycotoxin (toxic mold) exposure.
- Chronic heavy metal exposure (mercury, lead, etc).
- Chronic low-level systemic inflammation, whether dietary or environmental (e.g., gluten intolerance, sick building syndrome).
I’m not remotely suggesting that taking thyroid or B-12 or going gluten-free will cure CFS. However, if you are even mildly hypothyroid or B12 deficient, or gluten is causing chronic inflammation in your body, these issues are interfering with your body’s self-recovery systems.
There are a lot of steps you can take to improve the chronic exhaustion of CFS. For help and support, click through to the CFS Knowledge Center and also take a look at this listing of the top 50 CFS blogs.
Be well,
David Edelberg, MD