Initially I thought I’d misread the conclusion of the re-analysis of the standard treatment for chronic fatigue syndrome (CFS). “The claim that patients can recover as a result of (cognitive behavior therapy) and (graded exercise therapy) is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”
Damning words. After all, this recommendation from the PACE study had been gospel for nearly 20 years, based on data collected from several research centers around the globe. One of those centers was here in Chicago, where a DePaul professor and a Rush University-based internist had enrolled dozens of CFS patients, including several of mine. They wrote a book, joining others at the time, whose basic premise was that finally a treatment for CFS had been found.
Were life so simple!
As the name implies, CFS is a disorder whose essential feature is persistent, unexplained exhaustion. A frequent accompanying (but not inevitable) symptom is widespread muscle aching, prompting some researchers to rename the condition fibromyalgia-chronic fatigue syndrome. Other symptoms occasionally include poor memory (brain fog), headaches, depression, sore throat, and fevers.
A dispiriting history of CFS
CFS first came into prominence during the 1980s, when it was dubbed the “yuppie flu” because many sufferers were career-driven, hard-working young people who had developed a flulike illness that simply would not go away. As doctors looked for a specific cause, hoping to discover some magic-bullet cure, nothing revealed itself. Jacob Teitelbaum, MD, author of From Fatigued to Fantastic, remarked that every month a new villain turned up (Epstein-Barr virus, cytomegalovirus, candida, herpes, and a dozen others), none of which held up under serious scrutiny.
The much-revered Mayo Clinic was initially willing to take on CFS-fibro patients, but after a few years and a stream of failures (i.e., no positive test results) they couldn’t offer much. Like everyone else, they suggested a course of antidepressants, pain meds, psychostimulants, supportive psychotherapy, and physical therapy. In recent years, Mayo has turned down most CFS patients, telling them Rochester could do little more than what could be accomplished on the patients’ own turf.
Over time, the alternative medical community added Chinese medicine, herbs, nutritional supplements, chiropractic, and a dozen other modalities and therapies. And again, no real results.
The findings in the DePaul study were replicated in other CFS/fibro studies. CFS patients were enrolled and dozens of tests were ordered, all with negative results. Then the patients were divided into four groups:
Group One received cognitive behavioral therapy (CBT), in which negative patterns of thought and behavior are challenged and, with therapy, changed. Here’s a super-simplification of how CBT might approach a CFS sufferer: Let’s work on mental exercises to change how you perceive fatigue. Let’s talk about what you can do every day to get better. The main advantage is that your course of CBT will be short (a few weeks) as opposed to standard psychotherapy, which might continue through your entire incarnation. (The original, and much simpler, form of CBT was actually begun in 19th century France by psychologist Emile Coue. You’ve heard it before. “Every day, in every way, I am getting better and better.”)
Group Two received graded exercise. This is exactly what it sounds like. “We know you’re tired,” says the well-meaning physical therapist, “Just do a little movement today, a little more tomorrow, and in a few weeks you’ll be almost back to normal.”
Group Three received both CBT and graded exercise.
Group Four received nothing.
The winner was Group Three. The greatest improvement seemed to occur by using a combination of graded exercise and CBT.
As the author of this NYT op-ed writes, “The improvement rates and other reported findings were based largely on patients’ subjective self-ratings, which are vulnerable to bias. In contrast, none of the trial’s objective measures supported the claims of treatment success.”
With this latest re-evaluation of the PACE study, it’s clear you could spend many mind-bending weeks with a CBT therapist and many exhausting months slogging through graded exercise, but in the long run it turns out that you’ll not be much better than when you started.
Obviously, this is important news and a perfect example of medical flip-flopping. Well over one million CFS sufferers have been participating in this CBT-graded exercise combo. A majority of participating patients suspected no improvement, but when their specialist emphasized that this approach was the only one that actually produced results, patients dutifully persisted.
I never thought much of the CBT-exercise approach. It rang too much of the old saw, “We can’t find anything wrong with you, so it must somehow be your fault. You’ve been lying around for months or even years so your muscles have turned to JELL-O. Day in and day out, you think about how sick you are, so let’s do some quick-fix psychotherapy and get those muscles toned.”
In other words, when all else fails, blame the patient.
WholeHealth Chicago’s approach to CFS
Here’s what we do for people with CFS, with or without its fibromyalgia component,
at WholeHealth Chicago.
First, most patients arrive with a lot of lab tests that fill anything from a couple of thick binders to an entire wheelie suitcase. Most tests are the same-old, but we look for subtle abnormalities, like a normal thyroid test result that’s hanging onto its normal status by its fingernails. We give treatments that shift the patient’s thyroid and adrenal function to the upper-normal range.
We do the same with micronutrients–vitamins, mineral, amino acids, good fats–and also ensure the patient has had an updated test for chronic Lyme disease (the old test missed a Lyme diagnosis frequently). We review eating habits and make sure the patient’s gut is functioning normally. When you hear the term “functional medicine,” this is it. We want our CFS patient to be at optimal function before treatment begins.
Our approach to actual treatment proceeds from the fact that the person has likely had CFS for months (or years) and no significant cause has ever been found. The CFS probably began years ago when something happened that was traumatic to the entire mind-body unit. It’s like you were hit by a truck. What many patients have been doing for years is trying to find out what kind of a truck hit them. They’ve undergone a thousand tests to determine if it was a Mack, a GM, or an International Harvester. A pick-up, a delivery van, or a 16-wheeler.
Don’t bother. Knowing will not make you a hairsbreadth better.
I advise my CFS patients that their path to feeling better will occur with a series of micro-advances: take thyroid until tests show you’re a smidgen under being hyperthyroid (overactive thyroid). Take cortisol so your adrenal glands are in the high-normal range and, if you’re really exhausted, take Adderall. Using Adderall this way is called off-label prescribing, meaning Adderall’s not specifically recommended for CFS, though physicians are free to off-label prescribe it for this condition.
If you’re in chronic daily pain, we don’t want you to sit miserably, but rather take a decent pain med. The addiction rate on physician-supervised pain management is really low and many pain-management physicians are bristling at its quasi-criminalization by the federal government and certain pharmacy chains.
Finally, we seriously explore integrative approaches. A good nutritionist can check your gut to ensure you’re absorbing nutrients or see if you’re chronically inflamed because you’re gluten sensitive. A Chinese medicine practitioner or a homeopath can offer approaches your conventional physician either never heard of or regards with narrow-minded suspicion.
We’ve been using this functional/integrative approach, basically a tweak on Dr. Teitelbaum’s pioneering work, for many years and overall our CFS/fibro patients have been pleased with the results. With the door closing on the CBT/graded exercise medical flip-flop, it might be worth picking up the latest edition of Dr. T’s book and finding a physician in your area willing to work with it.
Both you, the CFS patient, and I, the doctor, have been fooled again. Mutter some foul imprecation under your breath (I did, and feel better for it) and…
David Edelberg, MD
5 thoughts on “A Medical Flip Flop for Chronic Fatigue Syndrome”
I have a colleague friend who has now devoted his life’s work to scouting out research studies that have lead to false conclusions. The number misleading & downright inaccurate research studies is much higher than most would fathom; and quite astonishing. I’m not aware of these particularly studies, but the rate of conflicts of interest is quite alarming and the manipulation of numbers & subjectivity renders a considerable number of studies invalid and unreliable. How these studies get published is beyond me! Unfortunately the average patient doesn’t have a background in statistics or know the correct protocol for scientific research and has to rely on the conclusions of these studies, even when their own experience and common sense tells them that the recommendations are nonsense. CFS, along with Fibromyalgia, ME, Candidiasis, etc. have long been buzz words for those in the traditional allopathic medical community that indicate to the doctor that the patient is a “head case”; unworthy of their time as doctors of physical medicine and swiftly passed off to psychiatrists, psychologists, physical therapists and the like. Most doctors need to add four little words to their vocabulary, “We don’t know yet.”, and assure their patients that their suffering will not be dismissed and that they will work with patients to see what works best for them.
I am also an active member of the disability advocacy community, and sadly some of the findings (or lack thereof) have led to numerous people being denied approval of their disability status. Suggesting that CFS patients could successfully complete a brief course of CBT & a graded exercise program when they are unable to get out of bed and when the slightest exertion only increases their symptoms has been a way of routinely denying their disability claims. This, in turn, creates greater financial stress which only exacerbates their condition.
Sadly, it also reflects the ongoing dualism and mind-body split that continues to be the prevailing belief in traditional allopathic medicine. Even within the holistic medical community, this dualism is still present and it speaks to just how prevalent and deeply ingrained the mind-body split is in our culture. Doctors, heal thyselves!
Fortunately there are exceptions such as Dr. E, who has never discounts these patients and their personal experiences, and patiently worked with them to find out what works best for their individual set of symptoms. He understands the whole person & is not dismissive of a patient because they pose a challenge to him. As one of his patients, I am most grateful to have him as my doctor!
Dr. Julien Arbor
“Recreational doses of Adderall are generally much larger than prescribed therapeutic doses, and carry a far greater risk of serious adverse effects.”
As a nurse I’ve seen patients denied appropriate pain medication because the provider doesn’t understand proper pain control management. I’ve seen pain Meds over pescribed for the same reason. That does not make the drug “evil”.
What’s wrong is if something likes pain med or Adderall” is prescribed inappropriately without the functional groundwork proposed by Dr. E – that is the pharmaceutical approach many doctors are pressured not because in insurance pressures, time constraints and lack of knowledge and the quick fix approach that leads to addiction.
A few of years ago, I was diagnosed with CFS by your office. I had medical markers indicating such issues and of course the symptoms were debilitating, including unexplained mild fevers, difficulty moving, eating, chronic migraines, visual disturbances, facial and extremity numbness, brain fog, depression, absolute exhaustion, inability to excercise, gastroparesis, IBS, GERD, and the list goes on. I developed this during my corporate career and about a year ago lost my job seemingly because of poor concentration.Despite the sensible recommendations back then,I continued to have these problems and it took a toll on my personal and professional life. I took time off to volunteer as a farm hand. Getting moving helped a bit. Unfortunately, once I stopped, it came back tenfold. My chiro couldn’t help and my regular doctor just kept telling me keep up with my pain meds. I happened upon NUCCA chiropractic about 7 months ago and found a whole different explanation of causes that were not found through other tests, including traditional x rays. My atlas had significant subluxation and was pressed forward against my brain stem. Read into this. Anyway, the treatments seemed subtle but they were the first to seriously change my life. I was super fortunate that the first treatment had eliminated all of my symptoms by the next morning, because it was what kept me going to the next visit. Eventually the muscle contractions would cause the atlas to slip back into its habitual placement so keeping follow up treatments is super necessary, until the muscles and tendons are retrained. I admit, it wasn’t always progress forward. But I almost never experience symptoms now unless I lift something wrong or do something that would cause the vertebrae to shift uncomfortably. I’m to the point now that 30 mins with a neck traction pillow and a nap will reset me. I am getting ready to open my own store now and I feel like a new person with new goals and ambitions! The unfortunate part is that these practitioners are scarce. I see Dr. Laneville in Willowbrook, about 50 miles from me. I forgot to also mention, I’m not relying on supplements, muscle relaxers, or pain killers to feel better anymore. I’m not saying this is a one stop solution for everyone but it is definitely worth an evaluation.
Adderall for fatigue?? That’s frightening. As someone who works in the field of addiction that’s comparable to prescribing cocaine as a pick me up.
Hmmmm,I am almost without words, wait, nope, I TOLD YOU SO!!!! Ok now that’s out of my system, thank you,Im grateful for your common sense approach, and the dignity it gives someone fighting this illness, its ok to say, “i can’t fix you, but I’ll do my best to help you feel the best you can.