Reeducating Doctors About ME/CFS?>
Expert Q&A

Reeducating Doctors About ME/CFS

by David Tuller, DrPH  

steve olsonSteven Olson, MD, a 1984 graduate of the UC Davis School of Medicine, practices family medicine at Kaiser Permanente in Santa Rosa, Calif. He also serves as the Permanente Medical Group's regional physician director for Northern California, an area that includes some 4.5 million members. Among his responsibilities is to oversee outside referrals, which involves matching patients with medical centers that provide services Kaiser Permanente does not offer, such as organ transplants, or assessing patient requests to see specialists not affiliated with the organization.

A few years ago, Dr. Olson noticed that some patients were seeking outside care for treatment of chronic fatigue syndrome, also called myalgic encephalomyelitis—or often these days, ME/CFS. ME/CFS, which often develops after an acute infection, is characterized by extreme exhaustion following minimal exertion, disrupted sleep, cognitive dysfunction, muscle pain, and other debilitating symptoms. It is estimated that around a million Americans suffer from the illness, which in some cases persists for decades. Many are largely unable to leave their homes. No medications have been approved to treat it.

As he began investigating why patients with ME/CFS were seeking outside referrals, Dr. Olson realized that few doctors at Kaiser Permanente knew much about the illness—and it turned out what they did know was mostly wrong.

For years, two interventions formed the standard of care for ME/CFS and were recommended by the CDC for treating it: cognitive behavioral therapy (CBT, a type of psychotherapy) and a program of incremental increases in activity known as graded exercise therapy (GET). These treatments were largely based on false but widely accepted theories positing that patients with ME/CFS symptoms did not suffer from an organic disease but rather from dysfunctional beliefs coupled with the negative physiological effects of inactivity, such as muscle atrophy—also known as deconditioning. Kaiser Permanente’s physicians had generally adopted this treatment approach.

But patients and advocates have long protested that the research supporting CBT and graded exercise therapy as treatments for ME/CFS—in particular, a 2011 study published in The Lancet—is fundamentally flawed. More recently, a growing number of researchers, doctors, and other experts have agreed with them. In 2017, after years of controversy, the CDC removed the recommendations from its website. When Dr. Olson himself reviewed the literature and talked with advocates, he ultimately found their concerns about the research to be well-justified.

Dr. Olson has now embarked on an effort to reeducate Kaiser Permanente’s Northern California physicians about the illness.Next month the organization will hold a video education conference to disseminate information about its new recommendations for treating and managing ME/CFS. Based largely on the CDC’s current approach, the recommendations focus on disease and symptom management, as opposed to the idea that patients can recover through therapy and exercise approaches.

Dr. Olsen talked with us recently about his own past views on ME/CFS and how he came to change his perspective.

BW: How did you first take on this issue?

Dr. Olson: On a regional basis, I’m responsible for overseeing referrals to outside medical services. We have 15 medical centers and 9,000 physicians in Northern California, so we’re a really large medical group. We can typically provide all the services that patients need, but if we don’t have a medically indicated service available in our plan, we refer members outside. We don’t do transplants, for example, so we send those out. Patients can request a service outside for anything, and we assess those cases.

For this particular illness, starting a few years ago we were seeing some requests for referrals to a CFS specialist. And I was thinking, “What is that? Is there such a thing as a CFS specialist?” We were having patients requesting to go outside for something that was poorly understood by our physicians, and by the physicians who were making decisions about what services we cover in our plans.

How often was this happening?

We had maybe eight requests a year, and that’s when I started to look at it. That number is relatively small for a membership of 4.5 million, so doesn’t impact anything financially. But we like to hold our physicians to a certain standard. So I’m looking at these cases and I’m highly ignorant on this issue. It looks like graded exercise therapy and cognitive behavioral therapy have all this evidence [supporting them]. I was exactly one of those physicians who would say, “You just need to push through it. And you might need to see a psychiatrist.”

As I started to look at this more, I started to speak with some members. I heard about people getting blown off a lot, and these stories were heart-wrenching. There’s nothing worse than having this condition and having someone blow you off. So I formed a group of physicians who were interested in helping. I got together with some infectious disease specialists, rheumatologists, family physicians, and the chair of our primary care physicians’ group. There’s a big educational and informational gap between what we know and what we’d like to know about ME/CFS. But we at least can agree on how we identify the illness, and we can agree it is not psychiatric.

ME/CFS can often be mistaken for depression. How would you differentiate the two?

When people have major depressive disorder, they typically don’t want to engage in activities. With ME/CFS, people want to continue to do everything, and they can’t. They would say, “If I do something, I’m wiped out.”

The universe of patients that complain of fatigue is large. When you see them as a physician, you look for hypothyroidism, you look for mononucleosis, and so on, and when you don’t find anything, you do find a lot of people with an underlying mental health condition, such as depression. The percentage of people in the universe of people with fatigue that actually have ME/CFS is small.

So there is this finite group of patients that we now understand have an objective illness that is not psychiatric—whether it’s metabolic, neurological, or something else. And then their symptoms may get disregarded by the medical profession. That’s been the experience of patients worldwide, not just in the U.S., and not just at Kaiser Permanente. And that’s why patients with this illness are so vocal and havehad to become their own advocates.

What fascinates me is that this condition has been so mismanaged throughout medicine. What’s the sociology behind this? How did we remain ignorant for so long? We have made well-meaning recommendations that were harmful. I can say that; it’s the truth. There is no evidence that this is a primary psychiatric illness, and it’s not related to deconditioning at all. And so the treatments we have been advising aren’t the appropriate treatments.

How do you assess what Kaiser Permanente was previously doing with ME/CFS patients?

I think some people were getting poor treatment. That includes misunderstanding from physicians, because most thought it was a primary psychiatric disorder. From talking to patients, I really don’t think there was any difference between our medical system and others; it was bad for patients everywhere.

I began to meet people involved in patient advocacy and found that they were all very grounded, looking at the current information and research about ME/CFS in a pretty objective manner. They really deserve credit. Their arguments were intelligent and based on the evidence.They rejected the GET and CBT framework because they found the science to be inadequate. I concluded they were right. What people wanted was recognition from physicians that they had a serious illness, and appropriate recommendations and not harmful ones. They also wanted more funding for studies for this condition. This is of course perfectly reasonable.

What specifically is Kaiser Permanente doing to change its approach to patients who have symptoms of ME/CFS?

I got recommendations from colleagues who were a little further along in their understanding of the illness, and patients would also send me information. Next month [April 2019] we are providing physician education via a live region-wide video conference. This will be offered to all of our physician colleagues, and heavily promoted especially to Family Medicine, Cardiology, Pulmonology, Neurology, and other specialties that can help manage associated symptoms of ME/CFS.

In addition, we’re working with our regional physician education department to develop a plan to educate them through grand rounds, a training module, and so on. A diagnosis and management guide aligned with current CDC recommendations will also soon be available to all providers in the system on our internal online clinical library. I’ve created a job aid for clinicians that’s a summary of that longer document. It’s one page—what you need to know, with links. That’s the basic information I want to get to every physician in relevant disciplines.

We are moving forward with the CDC approach now despite ongoing debate, and we are open to changes that will inevitably occur in the coming months and years. We want physicians to understand the current diagnostic guidelines. We will encourage them to treat symptoms and any co-morbid conditions, to prevent harm by trying to prevent flare-ups of post-exertional malaise (relapses in symptoms that patients often experience after minimal exertion), and to teach patients how to keep within their individual “energy envelope” (the term patients use to describe their total available energy).

I can’t stand to think of patients coming in to see a doctor at Kaiser Permanente and not being recognized as having what they have. I think with making these changes in our own health system, we can also spread this to the rest of medicine. This shouldn’t be just a Kaiser Permanente thing.

Editor's Note: The author is a senior fellow at theCenter for Global Public Healthat UC Berkeley whose position is supported largely through crowdfunded donations from the ME/CFS patient and advocacy community. The opinions in this interview do not necessarily reflect the views of the UC Berkeley School of Public Health or of the Editorial Board at BerkeleyWellness.com.

Also see Living with ME/CFS—and Filming It.