Trial By Error: Kaiser Permanente Changes Course

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.)

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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.

Comments on this entry are closed.

  • Diwi9 11 March 2019, 7:41 pm

    Thank you Jeff Schwartz, Dr. Steve Olson, and David Tuller. Jeff has been working on this for years. Finally, he has been heard and there is action. I hope recognition of ME/CFS and training within the Kaiser Permanente system provides support to many patients.

  • Richard Vallee 11 March 2019, 7:43 pm

    This is awesome.

    Life by a thousand cuts.

  • Laura C 11 March 2019, 7:54 pm

    Amazing work, Jeff Schwartz! So very grateful. Big thank yous to doctors Olson and Tuller too! <3

  • Fiona 11 March 2019, 8:16 pm

    What a great story Terrific to hear some good news for once. Wish Aussie doctors would show this kind of open-mindedness and initiative .

  • Valerie Howell 11 March 2019, 8:45 pm

    Thank you for being a Champion for the ME/CFS community! Maybe a switch to Kaiser in the future won’t be so unheard of.

  • Jackie 11 March 2019, 8:46 pm

    Jeff is a star for plugging away with health wise and other websites to get these changes ⭐️

  • Clyde 11 March 2019, 9:22 pm

    Thank you both for your tireless efforts (little pun there).
    And thanks Dr Tuller for this interview

  • Esther Siebert 11 March 2019, 9:36 pm

    Hi David! This is wonderful news! I wonder since Dr. Olsen implied that he wanted change within Kaiser to create change throughout the medical community if there is some way to have him and Kaiser publicly challenge other medical groups with their findings? If they would carry the message for us…

  • Jackson 11 March 2019, 9:56 pm

    Wait to see if any real change happens.
    Kaiser has a way of paying lip service when the issue is particularly troubling from a PR aspect, and then they do the minimum, and no more, like with mental health. Kaiser has a history of abuse with ME/CFS patients, telling them medical treatment was unnecessary, ignoring patients, ignoring comorbidities, not caring patients were suffering — but the worst is that Kaiser is incredibly ignorant of this illness and used uniformed medical sources to guide treatment. In a repeat of that, Dr. Olson has said he will follow with the CDC approach, which is a disaster. This shows how misguided Kaiser is — ignoring the scientists and research physicians who truly have expertise (like Open Medicine Foundation and Bateman) and instead stupidly listening to an underfunded and clueless federal agency whose funding for ME/CFS is at the bottom.

  • Mary 11 March 2019, 10:02 pm

    I am sobbing as I read this. My experience with Kaiser and my symptoms (which meet the CDC, NIH, ICC, CCC criteria for ME/CFS) is that I have been ignored and glossed over. My PC ran the basic labs and said, “We can entertain that you have CFS but without a diagnostic test there is nothing to be done”. He then offered me an anti-depressant medication. He never officially diagnosed me or wrote it into my records. With pushing, he referred me to a rheumatologist who barely listened to me and within 5 mins diagnosed me with FM and clearly stated that Kaiser does not diagnose or treat CFS (she hadn’t even heard of ME). I have been sick for 5 years. I feel abandoned by my Kaiser doctor. In fact, I won’t even go in to the doctor anymore, even tho I am so sick and just want to know what is wrong with me. And to think I pay over $500 each month for healthcare. For nothing. Thank you Mr Tuller for writing this, thank you Jeff for fighting this fight and thank you Dr Olson for caring enough to help change happen.
    I will be sharing this via email with my PC, hopeful that he will take part in the training.

  • Julie Horowitz 11 March 2019, 10:07 pm

    Thank you David Tuller, Jeff Schwartz, Jen Brea and all the warriors fighting the good fight for us!! I hope this will reach KP in Southern California too, not just Northern?

  • Mary 11 March 2019, 10:09 pm

    My Kaiser PC gave me the brush off and run around when I asked for an outside referral to an ME/CFS specialist. He told me he would look into how to do a referral. Then he came back to me with vague information that because there is no diagnostic test he can not prove I have ME/CFS and so a referral to a specialist is not possible. I want the referral in order for a specialist to determine and possibly diagnose me.

  • Vicki 11 March 2019, 10:11 pm

    I was diagnosed by a Kaiser doctor in 1998. In 2018, I had to educate my Primary Care Physician about CFIDS/ME/CFS, etc because I was handed information about CBT and GET. I still cannot get an outside referral for treatment that might help me. My hope is that Kaiser will start to listen. Soon. My life has been torn apart by this illness. It’s past time. How do we let our Kaiser doctors know about this video?

  • Sandra 11 March 2019, 10:14 pm

    What a wonderful article. Reading it fills me with hope that finally things are changing: ME/CFS patients in the not too distant future will finally have the chance to receive the recognition, help, and support they so desperately need and deserve. So grateful for the work done by Jeff Schwartz, Dr. Steve Olson, and, of course, our terrier for truth, Dr. David Tuller. Patients have waited so very long to be believed, trusted, and respected. And for our lived experiences of this devastating neuro-immune disease to be accepted by the medical profession as medical reality. I do so hope that the seeds being planted by Dr. Olson and Kaiser Permanente spread far and wide as quickly as possible. Keep up the good work. Blessings all.

  • Beverly 11 March 2019, 11:23 pm

    Our son was diagnosed with ME/CFS by a Kaiser physician in 2015, but was told there was not much kaiser could do for him. He suggested GET and CBT. We have paid out of pocket to see specialists outside of Kaiser because we were denied our request for referral to outside medical care. We are in Southern California. I hope the education and changes taking place in Northern CA will be shared in So Cal as well. This is promising news. Thank you for your efforts.

  • cort johnson 12 March 2019, 12:50 am

    Wow…What a hopeful sign! May Dr. Olson plant a seed that grows and grows and grows. 🙂

  • Sandy N. 12 March 2019, 1:13 am

    This will be a huge change. Thank you everyone.

  • Emily 12 March 2019, 1:44 am

    Don’t expect anything to really happen.

    This is one of the most complex and challenging illnesses there is.
    Olson is off his rocker if he thinks PCPs can handle this.

    He said EIGHT patients per year wanted to be seen by a CFS Specialist.
    There are approx 50,000 ME/CFS patients at Kaiser. Only 8 wanted medical care, says Olson. That’s baloney.

  • Sipora 12 March 2019, 1:48 am

    Thank you and I hope other hospitals follow in your footsteps. In all of UCLA there are zero CFS docs. It’s horrible. I’ve given up finding a doctor but this give me hope.

  • Sherry M. 12 March 2019, 2:14 am

    I am thrilled to hear that Dr. Olson is embarking on educating Kaiser docs about ME/CFS. I have to agree with above comment not to rely on CDC but instead to talk to the doctors specializing in this such as the Open Medicine Institute (Dr. Kogelnik) in Mt. View, Dr. Montoya at Stanford, Dr.Nancy Klimas, Dr. Bateman and other experts around the country who are way more knowledgeable and have the clinical experience. That way Kaiser can incorporate practices that are working for CFS patients. Thank you again!!

  • Couch Turnip 12 March 2019, 2:26 am

    It’s interesting to read online that in the early 2000s Kaiser Permanente’s performance was compared to that of the NHS. A 2002 paper in the BMJ seems to have had a significant influence on UK policy making, and apparently the NHS paid for teams to go to the US and study Kaiser Permanente’s model of healthcare to try to reduce costs in the NHS. Let’s hope the NHS pays just as much attention if Kaiser Permanente comes good on ME/CFS.

  • Bill Clayton 12 March 2019, 2:51 am

    This is great news. Not only for those in the US, but hopefully for us dealing with ME and ME Awareness here in the UK.

  • Catherine Carrington 12 March 2019, 2:53 am

    I burst into tears as I read this. My daughter became ill her freshman year in high school. The pediatric nurse practitioner at Kaiser didn’t know what to make of her and referred her to psychiatry and, later to endocrinology. The endocrinologist, before even examining her, said she needed “talk therapy,” never acknowledging that depression doesn’t cause tachycardia, wild swings in blood pressure, light sensitivity and numerous other autonomic abnormalities. Finally, finally we insisted on seeing a new pediatrician who had just come to town, Alka Jhans MD, and she listened and studied and came back with a diagnosis: CFS with POTS. She didn’t really know how to treat it, but she worked tirelessly to get an referral to a CFS doctor and, later, to help my daughter get disability benefits. This Kaiser pediatrician was wonderful, but Kaiser itself was not. The referral committee did acknowledge that they didn’t have a single doctor with CFS expertise in the entire Kaiser system,but we were told that the years’ long wait list at Stanford’s CFS clinic was too long to meet Kaiser’s quality standards, and Open Medicine, where appointments were available, didn’t have a Kaiser contract, so no referral would be made. We went anyway and we paid tens of thousands of dollars out of pocket over the next several years. When our daughter aged out of pediatrics and transferred to family medicine, we found another caring Kaiser doctor who also didn’t know anything about treating CFS and POTS but was willing to collaborate with the doctor at Open Medicine by ordering lab work and medications. After 7 years, after missing all of high school and college, my daughter began to recover. So I am grateful for some of the individual clinicians at Kaiser, not only the doctors, but also the lab techs who knew her by sight and were so sweet about her needle phobia; the physical therapist who was so caring in trying to help her with gentle manipulation therapy when she could not do any exercise without crashing; the dietitian who helped with suggestions for packing in calories and protein when she could barely eat due to nausea. And I am so pleased that Kaiser is finally putting energy and focus into trying to understand this horrible illness. I hope no other child, no other family, has to fight so hard to get help from Kaiser. To say the official attitude was dismissive is an understatement.

    I would caution, as others have, that the CDC has been a reluctant follower in developing its current guidelines. If they want to finally get it right, Kaiser would be wise to look to leadership from the handful of clinicians and researchers across the US who have been stretching pennies and their own stamina to conduct research in this field for many years. Let’s hope this is a new day for Kaiser’s ME/CFS patients.

  • K. Mullins 12 March 2019, 4:35 am

    I hope this is good news. I’m waiting to see what changes they actually make. Very thankful for Dr Tuller and all the thankless advocates for M.E. throughout the years. We wear out and get left behind. I do hope this is what it takes for the whole medical community to open their minds, eyes and hearts and see what people with the debilitating disease of Myalgic Encephalomyelitis live like. M.E. has a different WHO (World Health Organization) ICD code of G93.3 than CFS (Chronic Fatigue Syndrome) R53.82. They are 2 separate diseases, classified in 2 different categories, each mutually exclusive of each other. Read Oslers Web for the history and look into the International Consensus Criteria (ICC) for diagnosis and other information. M.E. is NOT CFS.

  • Nina E. Steinkopf 12 March 2019, 4:39 am

    Thank you, this brings hope.

    Kind regards from Norway

  • Janis 12 March 2019, 5:08 am

    I’m confused…accolades given for recognizing we really are physically sick, not mentally? At my recent doctor appointment I was told to exercise. I guess he didn’t read the CDC handout I had just given him which stated ME/CFS patients have no tolerance for exercise. In fact, the shower I had taken to go to the appointment completely wiped me out. When I asked if I could have the meds that help me most, (Ativan and Tramadol) he said I seemed desperate. I was so weak I thought I should not drive home…yes, I was desperate. Desperate for help, and the fact that Dr. Tuller recognizes we are sick and that there is no help, with very few doctors recognizing our illness, makes me even more desperate. Will we ever get medical help? I’m older, so I don’t think in my lifetime. Hopefully the younger ones will get help. For now, I rest, try to find peace by not invoking anger when there is not only no help but there is often physician ridicule.

  • Lady Shambles 12 March 2019, 6:29 am

    Like others above I caution too much optimism unless ICC is rigorously implemented as the preferred diagnostic criteria ( it’s also a shortcut to, as accurately as possible, naming the disease as ‘ME’). Let’s hope the multi-headed Hydra of SEID is not embraced. I agree with others that if this is to be meaningful then truly knowledgeable doctors and researchers should engage with KP. Otherwise it’s little more than PR.

  • Sandra Mayor 12 March 2019, 6:46 am

    I am overwhelmed by gratitude. Reading the post has spent my cognitive energy for now. All I can say is a highly loaded Thank you!

  • Susan Masterson 12 March 2019, 7:29 am

    Thank you so much for pushing to look at this from a different angle. I have been talking about this in my own website and this energizes me (a little, lol)! http://www.doctorstrivetothrive.com/chronic-illness-center/

  • jimells 12 March 2019, 10:03 am

    “People were being referred to psychiatry because the clinicians … didn’t know what else to offer them.”

    How is this acceptable for *any* illness? This statement highlights how mental illness care is used as a dumpster for the convenience of doctors. I wonder if mental health workers and psychiatrists understand that they are the trash collectors of the medical industry.

    Housebound patients everywhere in the US receive no care at all. The medical machine doesn’t even bother to justify this policy. The doctors simply state, “We don’t do home exams” as if that solves the problem.

    To add injury to insult the doctor I am saddled with refuses to renew prescriptions if I don’t show up at least once a year. He is not the least bit concerned that travel to his clinic will make my symptoms worse. He just don’t care.

    At my last exam I told the doctor the orthostatic intolerance was getting worse. This now includes transient air hunger on standing. His response: “Buy a cane.” And then he showed me pictures of canes he was selling!

  • Alison Orr 12 March 2019, 1:17 pm

    “…based largely on the current recommendations from the US Centers for Disease Control and Prevention.” Oh… More propagation of SEID then. *sigh*

  • Ken 12 March 2019, 1:19 pm

    This was encouraging, thank you.

  • Kolya Krece 12 March 2019, 4:14 pm

    “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.”

    This is the 64 thousand dollar question. Maybe instead of studying the psychology of CFS/ME patients so intently, we should be studying the psychology of physicians and the sociology of medicine for answers. Could it be that the construct of psychosomatic conditions is more about assuaging the egos of physicians when they confront things that they do not understand? Does modern medicine pay all that much attention to the real world health experiences of patients? When physicians talk about evidence based medicine does that evidence include patients observations about their own bodies and health?

    Suppose a medication caused significant psychiatric symptoms in 5% of patients that took the drug. Could the current health care system even figure out what was happening? Or would that 5% of patients just be labeled as being weird and psychosomatic and therefore ignored?

  • Gina 12 March 2019, 5:09 pm

    Wonderful news!! When insurance companies start working with the Workwell Foundation (physiological management) and their patients stabilise and/or improve the ship will start to turn around. Well done Jeff and Kaiser!!

  • Cynthia Liu 12 March 2019, 5:57 pm

    I am so encouraged by this. There are some truly great physicians in the Kaiser system. You have to look for them but they are there and they care. Dr Olson is one. I am one of the ME/CFS patients who has been denied care and been told I had “ conversion syndrome”, and told to exercise and outright told by a neurologist that I didn’t have ME even when given NIH diagnosis guidelines. She said because ME meant “inflammation of the brain “ and all my scans were negative for that. One rheumatologist did say it was real but admitted there were no doctors in Kaiser to refer me to. I have had to pay thousands of dollars to see an outside specialist who has helped. This is unacceptable.
    I’m wondering if there is a way to get reimbursement for my expenses? Trouble is I have so little energy to explore this time just passes. Writing this comment has taken three attempts and two hours. Everything is so difficult.
    I’m just hoping the information gets out and Kaiser physicians can now adequately treat ME/CFS patients.

  • MS 12 March 2019, 7:57 pm

    First, this is a great move by Kaiser. I’m glad things are changing. Know it will be slow but a journey of a thousand miles starts with 1 step. I too hope Kaiser seeks the advice of experienced clinicians. So much of the information out there is just plain wrong or obsolete or strikes the wrong tone.

    @jimells I don’t know your physician’s motivations of course. However, FYI, some states require that doctors see their patients in-person at least once a year in order to prescribe medications for them. This is because appropriate care requires that they physically examine their patients. There have also been cases of substance abuse where unscrupulous docs prescribe meds like opioids without seeing a patient hardly for years and years. States control medical licensure and renewal.

    I know that doesn’t solve your problem. But gives you an idea of what the rules are. BTW, I speak as someone who has to fly annually to see my ME/CFS doc so that she can continue to care for me (we do telephone visits in-between) and who has been on the other side too, as a worker visiting homebound patients.

  • Siv Pierson 12 March 2019, 8:33 pm

    We ME-patients are so lucky to have co-patients like Jeff Schwartz and now the support of dr Olson who is
    willing to listen, learn, and share important facts about this devastating chronic illness. I thank you from my heart.

  • Leslie Fellows 13 March 2019, 12:56 am

    Thanks to Jeff and Dr Olson for the hard work they are doing. It is mainly through patient advocacy and a few doctors who care that some progress is starting to be made. As an ME/CFS patient at Dr Montoya’s Stanford Chronic Fatigue Clinic, I was removed from my treatment when Kaiser would no longer cover it. I appealed all the way to the top at Kaiser and then through the Dept of Managed Health Care. It took over a year and a huge amount of paperwork. They denied continued Stanford treatment because they found it ‘experimental’ and insisted I could get treatment ‘in-house.’ The infectious disease doctor I saw at Kaiser suggested CBT and sent me to a therapist. In fact Kaiser has no ‘in-house’ treatment and apparently no understanding of the disease. It took what little energy I had to fight for my rights as a patient. Ultimately, I decided to pay out of pocket for my Stanford treatment. I would love to speak with Dr Olson and provide my perspective. Is it would be great to get access to the info or video so I can pass it on to my Kaiser doctor/s.

  • Jackie 13 March 2019, 7:57 am

    Thank you so much!!! Every doctor I saw from 24-33 laughed me off as being dramatic when I told them that I had to make a semipermanent bed in the back of my Jeep and take naps on my lunch break to make it through my workday. When I told them there was a definite correlation to how tired I was and how much pain I was in, they chuckled and told me it was normal to have aches and pains and be tired when one nears 30. They treated me like I was a melodramatic asshole with no concept of what aging is like. Men and women did this.

    Even at 30 when I developed a nasty stomach ulcer from years of constant pain meds + Red Bull to try to dampen the constant pain and keep me awake, still, the ulcer was treated without a second thought as to why I was always in pain and exhausted at 30 years old.

    Unfortunately, even after I started missing long periods of work, even after I had been fully written off work for eight months, the female doctor I was seeing told me she couldn’t continue to give me a sick line as she couldn’t find anything wrong with me and I was “fine” – by that point, I had pushed myself into being bedridden for 8 months. But the doctor I had been seeing legit had the nerve to tell me I was “fine”….

    A few months after, after switching doctors again, I finally got my diagnosis and found out that all my years of relentlessly trying to push through actually actively helped destroy my health and now it may never come back. When I think about this, I am enraged. Doctor after doctor from New York State to the UK continued to ignore all the sign of ill health because they couldn’t find the issue. Their negligence actively led to me irreversibly damaging my health, my body, my quality of life.

    I haven’t been able to work since September 2017. I’m only 35 now. I had my career ahead of me. I had my life ahead of me. I had only just gotten married. And I’ve been pretty much confined to my bed for almost two years now. This is NOT a choice! No one chooses to have their life ripped away from them.

    I was a high achiever. I graduated summary cum laude and went on to get a masters at one of the top 15 universities in the world (how I ended up in the U.K.). I was extremely physically active. I walked a minimum of 2 hours a day with my dog, I danced, rode horse, hula hooped daily, hiked/backpacked/camped.. now, I can barely get out of bed most days.

    Please, your work is crucial. So many people are wasting their lives away, desperate for acknowledgement and help. The work you do is so vital. Thank you from the very bottom of my heart.

  • Jackie Elwin 13 March 2019, 10:06 am

    It is so sad that the ME community and researchers do not look at lyme, or bartonella. Even if 60-95% do not have the wrong diagnosis of ME when it is lyme, the study of that would help in the ME/CFS research and way forward for treatment.
    It is no longer relevant to look at single pathogens and certainly not just viruses. All has to be looked at as a quorum, interrelated pathogens who communicate as these emergent diseases evolve. Trial treatments should be looked at. Decades of research have got nowhere, the time for treatment is now.

  • jimells 13 March 2019, 1:08 pm

    If Kaiser simply follows the CDC and goes no further then very little will change for patients. Here is CDC’s Elizabeth Unger in today’s hatchet job on Dr Tuller (and us patients): [1]

    “For some, carefully managing exercise and activities can be helpful,” she said. “Likewise, some patients may find that talking with a therapist helps them.”

    GET and CBT by another name is still potentially harmful. Dr Unger is either well aware of this or she is hopelessly incompetent. According to Reuters, CDC didn’t change their recommendations, they simply removed jargon. As far as I know this is the first time CDC has actually commented on the website changes.

    And speaking of CDC incompetence, will we *ever* see even a single result from the ballyhooed “Multi-site Clinical Assessment of CFS”? [2] Yes I know research takes time, but WE’VE BEEN WAITING SINCE 2012.

    [1] http://archive.today/lwDNQ
    [2] https://www.cdc.gov/me-cfs/programs/multi-site-clinical-assessment.html

  • Beverly Crawford 13 March 2019, 3:18 pm

    As an ME/CFS patient who became disabled and fortunately diagnosed with CFS by my Internal Medicine physician who had been my Dr for 9 years before I became disabled. Because he knew me as an A type person, he believed me. He was heartbroken for me to show all the symptoms. He was willing to go to court if need be, for me to qualify for disability from Social Security.
    Now for the shocker, this happened in 1988, over 30 years ago. This physician is still my Internist. I was 50 years of age. I am now 80 years of age. I spent months in bed, homebound with my physician treating symptoms with understanding and care. I was granted Social Security Disability at age 52 and have dealt with all the symptoms listed by so many of you patients above. I totally agree with those of you telling to not use CDC or NIH. There are so many qualified researchers who will be a much greater help in navigating the complexity of this mystery illness that has changed patients lives in such significant ways. I thank emensly the patient from Kaiser and his caring physician. This is what it takes. Committed and individuals with follow through, and to never ever give up the fight for health and wellness.

  • Alan Gurwitt 13 March 2019, 4:43 pm

    The events at Kaiser Permanente are wonderfully encouraging. I too congratulate all involved. Thank you. I am a retired psychiatrist with ME for over 30 years. I wish I could say that psychiatrists are the exception among physicians and know all about the organic nature of ME/CFS. Nothing is further from the truth. Before 1970 ME was assumed to be an organic illness. It was in 1970 that British psychiatrists began to claim that ME was /is a psychogenic phenomenon. By 1980-1985 most physicians around the world became convinced that they were right, yet the evidence the psychiatrists provided for their theories is sophisticated nonsense. It is clear that physicians have failed to read the so-called evidence. ME/CFS is not now or has it ever been a psychosomatic illness. The “biospsychosocial” school is being discredited but it will take much time before it fades away. David Tuller’s work has been wonderfully helpful.

  • Liz 15 March 2019, 12:45 pm

    Thank you David Tuller for this incredible report! Does Kaiser plan to send a representative to the upcoming NIH conference April 4-5?

  • Anil van der Zee 17 March 2019, 6:03 pm

    Simply amazing. Thank you for this!

  • Nancy 27 March 2019, 5:25 pm

    THANK YOU for helping educate doctors. And thank you for posting this interview. We will show this to our doctors, so your efforts will yield even further results.

  • Brooke 30 March 2019, 12:54 pm

    “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…”

    This quote kept me from reposting the article (even though Tuller’s part was great) because this doctor is spreading stigma against depressed patients. It shows this guy still doesn’t get it. ME is different from depression bc it has different symptoms and different biological characteristics, NOT because depressed patients don’t *want* to do things.
    Depressed patient’s symptoms improve with exercise, ours get worse. The diseases have completely different immune characteristics. It bothers me because no patient wants to be in bed all day, and we shouldn’t be implying people don’t want to get better just because they have a mental illness instead of a physical one. This line of thinking is unacceptable in a medical director imo.