By David Tuller, DrPH
Over the years, I’ve slammed U.S. medical and health care institutions that have championed the GET/CBT treatment paradigm for the illness or cluster of illnesses variously known as ME, CFS, ME/CFS or CFS/ME. I have done this both before and after the U.S. Centers for Disease Control and Prevention removed its own recommendations for the two therapies in the summer of 2017.
These institutions have included Kaiser Permanente. For years, its public website about the illness included information about CBT and GET. (This material was actually created not by Kaiser Permanente but by an organization called Healthwise, which provides online clinical information services.) I also heard that it was hard to find doctors within the Kaiser Permanente system who understood the illness and could provide appropriate disease and symptom management.
Jeff Schwartz, 56, is a Kaiser Permanente patient in San Francisco who has struggled with the illness for decades. Given what he found to be inadequate treatment, he wanted Kaiser Permanente to refer him to and pay for an unaffiliated specialist. This request was refused, and Schwartz paid himself for outside medical care. He also began pushing for changes within the system. Luckily, his efforts ended up linking him with Dr Steve Olson, a Kaiser Permanente family physician in Santa Rosa.
It is great to be able to report that their collaboration, among other factors, has now led to a turn-around in how the organization approaches the disease.
In addition to his medical practice, Dr Olson is a regional director. Among other responsibilities, he oversees outside referrals for patients in Kaiser Permanente’s northern California region. In some cases, these outside referrals are necessary because patients need services that the organization does not offer, such as organ transplants. In other cases, as with Schwartz, patients themselves make the request.
Dr Olson recognized a couple of years ago that the system was not providing optimal treatment for ME/CFS patients. So he embarked on a campaign to learn about the illness, which included connecting with patients like Schwartz. The result is an ambitious strategy to educate Kaiser Permanente’s northern California physicians about ME/CFS. Next month the organization will hold a video education conference to disseminate information about its new approach, based largely on the current recommendations from the US Centers for Disease Control and Prevention.
I spoke with Dr Olson recently about his own past views, what Kaiser Permanente got wrong, and what’s happening now. (This Q-and-A has been edited for clarity.)
How did you first decide to take on this issue?
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 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 over 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 permanent physicians, and by the physicians who were making decisions about what we have in our plans. That could be based on whatever they’re hearing from friends or based on their own research. They believed that they were not seeing knowledgeable people within our medical group.
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 to a certain standard and be able to say that wherever you’re at in the Kaiser Permanente system we’re making the same decision. Directors from all the medical centers meet all the time, we share different cases, we standardize everything. People were asking, ‘What is this stuff? We should be looking into it.’
This was probably 2016. So I’m looking at these cases and I’m highly ignorant on this issue. It looks like graded exercise therapy and cognitive behavior therapy have all this evidence. And yet patients were unhappy that physicians were not knowledgeable about this condition, and 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. That’s when I first talked with Jeff. What a jewel he’s been! I found that his ability to look through and assess the information was of a very high quality, and he directed me toward resources. And I engaged with other members as well. You hear about people getting blown off a lot, and these stories are heart-wrenching. There’s nothing worse than having this condition and having someone blow you off.
I did a poll of colleagues. They often recommended exercise and a mental health evaluation, as I used to do. They just thought that’s what you were supposed to recommend. People were being referred to psychiatry because the clinicians honestly believed that would be helpful for their care and didn’t know what else to offer them. So I formed a group of physicians that were interested. I got together with some infectious disease specialists, rheumatologists, some family physicians, the chair of our primary care physicians group. There’s a big educational and informational gap here. But we at least can agree on how we identify it and we can agree it is not a psychiatric illness.
How would you differentiate this illness from depression?
When people have major depressive disorder, they don’t want to engage in activities. They’re depressed. With this illness, people want to continue to do everything, and they can’t, and then their symptoms get disregarded by the medical profession. That’s been the experience of patients, and that’s why they’re so vocal and have had to become their own advocates. That’s worldwide, not just in the US, and not just at Kaiser Permanente. But we can do something about that situation here.
The universe of patients that complain of fatigue is large. When you see them, 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 a mental health condition, such as depression. But the percentage of people in that universe that actually have ME/CFS is small. People with ME/CFS are different though, and would say, ‘If I do something, I’m just wiped out.’
So there is this group of patients that we now understand has an objective illness that is not psychiatric—whether it’s metabolic, neurological, or whatever. And 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—that’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.
And there has been an amazing lack of physician education in general. There has been a total void. Every physician needs to understand the current concepts around ME/CFS, or whatever you want to call it. We’re all embroiled now in looking at the data. My goal at this point is, however we got here, is that every physician needs to understand the current state of information and make evidence-based recommendations to help patients.
How do you assess what Kaiser Permanente had previously been doing?
I think some people were getting poor treatment. From talking to patients, it didn’t seem like what was happening here was any different from what people were experiencing anywhere. That includes misunderstanding from physicians, because most thought it was a primary psychiatric disorder. I really don’t think there was any difference between our medical system and others. It was bad for patients everywhere.
When I first started this, I looked mainly at the information from Britain. And I thought, ‘Wow, they’re really being thoughtful and trying to figure out what the right thing is to do, and we need to get people this evidence-based care.’ That’s how GET and CBT were presented. And I was moving full steam ahead. But then I started talking to Jeff and other patients, I watched Unrest [Jen Brea’s documentary about the illness]. And people’s stories just tug at your heartstrings.
What I found was almost everybody involved in patient advocacy was very grounded in looking at the current information about this 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 money for studies for this condition. This is of course perfectly reasonable.
It’s surprising to me that this wouldn’t have been dealt with earlier at Kaiser Permanente, but everybody’s busy and doing things and there are always a lot of issues to work on and improve things. So it wasn’t laziness. There were a lot of things in the too-hard pile, and this was one of them. But it seemed like a no-brainer to me.
Yet it turned out it wasn’t just what doctors were telling patients but also the information on the website, which was available to anyone. How did that happen?
I hadn’t looked previously at what patient materials were available on the site, so I wasn’t aware that those recommendations were being presented to patients until Jeff pointed that out to me. The Healthwise material wasn’t vetted by us, and that was a big piece of the problem. The recommendations there were wrong and potentially harmful. Physicians in general, including myself, did not understand the condition, let alone that there were even any recommendations out there, whether they were right or wrong. I was in a total vacuum about it.
So what has been Kaiser Permanente’s approach to doing something about it now?
I got recommendations from colleagues who were a little further along in their understanding of the illness, and patients would all send me stuff. I think the physician piece is the most important part. A diagnosis and management guide aligned with current CDC recommendations will soon be available 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 do 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 as a way to move forward now despite ongoing debates, and we are open to changes that will inevitably occur in the coming months and years. We understand that things are going to change, they’re still in flux. What name are going to settle on, for example? I think the name “chronic fatigue syndrome” has engendered negative connotations around the illness. We are using ME/CFS currently, but I don’t want to worry too much about the name. I want to make sure we can identify the patients out there, whatever we’re calling it. We also need to talk about disability. We need to help people that are disabled.
Next month we are providing physician education via a live region wide video conference. This will be offered to all of our physician colleagues, and heavily marketed especially to Family Medicine, Cardiology, Pulmonology, Neurology and other specialties that can help manage associated symptoms of ME/CFS. We’re also working with our regional physician education department to develop a plan to educate them through grand rounds, a training module and so on.
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, to teach patients how to keep within their individual energy envelope. I can’t stand to think of a patient coming in to see a doctor here and not being recognized as having what they have. I think with making these changes, we can also spread this to the rest of medicine. This is not just a Kaiser Permanente member thing.