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Trial By Error: Kaiser Permanente Changes Course

Discussion in 'General ME/CFS News' started by CFS_for_19_years, Mar 12, 2019.

  1. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Kaiser is one of the earliest HMO’s (health maintenance or managed care organizations; I don’t perceive a difference between the terms) and influential. I guess because of good ability to manage money.

    They manage to get good Medicare reviews, but that’s a very scripted process. They are very good at staying on script.

    I have noticed several times them being held up as examples for a national plan.

    I always get confused and think they write the influential Kaiser Health News, but that seems to be different.
    https://khn.org/about-us/
     
  2. Inara

    Inara Senior Member (Voting Rights)

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  3. Webdog

    Webdog Senior Member (Voting Rights)

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    In a sense, yes. That is the Nov 2018 updated Healthwise ME/CFS web page. It is Healthwise's position on ME/CFS, but not Kaiser Permanente's official position.

    Healthwise is independent from Kaiser Permanente, but Kaiser Permanente uses Healthwise content on their website. Healthwise is a content provider with many clients, similar to UpToDate.

    As of November 2018, Healthwise stopped recommending GET and CBT for ME/CFS.

    The reason both Kaiser Permanente and Healthwise have recently changed position is primarily due to the CDC changing position. Other than that, the timing is coincidental.

    There is a separate Healthwise ME/CFS thread:
    https://www.s4me.info/threads/healthwise-to-retire-the-get-cbt-topics-from-medical-content.3500/
     
    Last edited: Mar 16, 2019
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  4. dave30th

    dave30th Senior Member (Voting Rights)

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    A version of the KP interview with Steve Olson has now been posted on BerkeleyWellness.com: http://www.berkeleywellness.com/hea...olicy/article/reeducating-doctors-about-mecfs

    this will hopefully help spread the information that things are changing. Of course KP will need to keep at this to make sure its physicians get the message and begin to understand things differently. That will be not be a simple process. In the US, the KP news will hopefully trigger some other coverage. It should--but with this illness, it's always hard to predict.
     
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  5. Esther12

    Esther12 Senior Member (Voting Rights)

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  6. Webdog

    Webdog Senior Member (Voting Rights)

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    Another huge thank you @dave30th. This is real hope for Kaiser Permaenente members with ME/CFS.

    There will be a huge physician cultural shift to accomplish. But this physician-led "bottom up" approach has the potential to change healthcare more rapidly than government ever could.

    I've seen Kaiser Permanente provide excellent integrated care for Multiple Sclerosis, cancer, HIV, and other serious chronic illnesses. Hopefully, implementing a similar chronic care model for ME/CFS will also prove successful.

    This model could spread widely throughout healthcare. How far is anybody's guess. Hopefully, Kaiser Permanente changing course signals the inevitable and rapid end of the GET/CBT treatment approach in US clinical care (Mayo Clinic changing course will be another sign... it will happen).

    Fingers crossed.
     
    Last edited: Mar 29, 2019
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  7. Andy

    Andy Committee Member & Outreach

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    http://www.virology.ws/2019/04/01/trial-by-error-a-bit-more-on-kaiser-permanente/
     
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  8. Alvin

    Alvin Senior Member (Voting Rights)

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    This is a big deal. If your articles were posted on many websites it would greatly expand your reach.
    How could this be done?
     
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  9. Joyful Warrior

    Joyful Warrior Established Member

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    What drove Kaiser to action, IMO, was webdog working internally along with ME/CFS patients slamming Kaiser hard publicly in Social Media
    (check Twitter). Kaiser is extremely sensitive about its presence in Social Media, and patients who'd received no care were coming down hard on KP (rightly so).
    Several Kaiser patients who complained publicly after Kaiser made excuse after excuse not to treat them are not convinced this new initiative was done
    with any intent to do the right thing medically, but rather to make the PR mess go away. One patient said she's seen Kaiser do this before with other patients
    "to make them go away quietly" but their illness still went untreated.

    Parallels have been made to Kaiser's lack of mental health care. Big stink, even a fine by the DMHC, promises of improved care, but nothing much happened.
    Big stink again, second fine, not much improved still. Third big stink, and now we shall see.

    Will ME/CFS medical care be similar? Promises, but no real understanding or delivery of care based on current science and treatment protocols?

    Is this basically a PR move? Dr. Olson, a GP, has only a superficial understanding of this illness. In 2018 when speaking to patients,
    he was using the term SEID for ME, and he is now following the CDC for medical direction, when the CDC makes no mention
    of treatment protocols based on current science. Not a good sign. I'm not seeing any news or plans to hire ME/CFS physicians.
     
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  10. strategist

    strategist Senior Member (Voting Rights)

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    That's because there are none.
     
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  11. Joyful Warrior

    Joyful Warrior Established Member

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    You mean there are no treatment protocols for ME/CFS based on current science? Or none that CDC mentions on their website?
     
  12. Webdog

    Webdog Senior Member (Voting Rights)

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    For better or worse, the CDC says the primary care physician can develop and implement a treatment plan.

    This isn't the end game. But it's a rejection of the GET/CBT deconditioning model and an affirmation that ME/CFS is a serious biomedical illness not a psychological disorder. That's huge.

    At this time, there is no reliable evidence (that I know of... please post if there is) that ME/CFS specialist care results in better outcomes than a trained primary care doctor. Kaiser Permanente followed some of Montoya's ME/CFS patients and weren't impressed with the results. Unless there is good evidence that ME/CFS specialist care has better outcomes, healthcare providers will be reluctant to offer it.

    Managed healthcare generally won't just implement something because patients want it or from anecdotal reports. There needs to be what doctors consider to be "evidence" (not all research evidence is applicable to clinical care). The CDC Info for Healthcare Providers was "evidence" acceptable to Kaiser Permanente when nothing else really was. The CDC "evidence" was accepted as better than PACE "evidence".

    I think Dr. Olson has made it very clear medicine was wrong to accept the PACE findings (even while the CDC has been silent). Also, Kaiser won't strictly implement the CDC Info... much of what Dr. Olson has said (both publicly and privately) goes beyond the CDC. This includes acknowledgement of recent research, of GET harms (which the CDC has been silent on), and that patients need symptomatic relief (the CDC addresses this, but doesn't give much in specifics).
     
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  13. Alvin

    Alvin Senior Member (Voting Rights)

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    There would be no evidence because there is no official medical treatment to give.
    That said a specialist would be someone who formally diagnosis patients who have been referred like any other serious disease has specialists, would help produce a paper trail for disability (and the patient's peace of mind), screens patients for other disease that masquerade as ME (autoimmune, genetic, Fibromyalgia etc) and educates patients about ME's symptoms, best practices and future outlook. And even off label/experimental treatments (LDN or antivirals if indicated).
    Thats my take anyways
     
  14. Webdog

    Webdog Senior Member (Voting Rights)

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    That said, I do hope Kaiser Permanente hires an ME/CFS specialist, particularly to help care for severe and very severe patients, and to help diagnose pediatric ME/CFS.

    When Kaiser Northern California hired its first sleep specialist 16 or so years ago, testing and care for sleep apnea dramatically improved. The same could happen for ME/CFS.
     
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  15. Alvin

    Alvin Senior Member (Voting Rights)

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    +1

    I suspect your work is not done here. I do hope they become proactive but its not unlikely they will keep dragging their feet.
     
  16. Hutan

    Hutan Moderator Staff Member

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    Everyone has only a superficial understanding of this illness right now, even those of us who live with it every day.

    Dr Olson came across as completely sincere. He looked at the evidence and saw that people with ME/CFS are suffering a lot, that CBT and GET aren't helpful treatments and that there is a need for work to find evidence-based treatment options. He's not suggesting that 'not offering CBT and GET' is the end point here as far as caring for people with ME/CFS. Abandoning the idea that ME/CFS is caused by faulty beliefs and deconditioning is a necessary step towards better research.

    If Kaiser Permanente get good PR out of this, that's absolutely fine by me.
     
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  17. Joyful Warrior

    Joyful Warrior Established Member

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    What does Kaiser expect from once-a-year appointments?

    Kaiser provided no MECFS treatment within their network plan.
    Patients suffered severely.
    After multiple reconsiderations and appeals that patients made while ill -- an arduous path -- the patients were finally referred to the Stanford ME/CFS Clinic.
    The patients are seen at Stanford ONLY ONCE PER YEAR.
    There is no Kaiser supervision of illness other than that.

    So, "Kaiser wasn't impressed with the lack of results" from once-a-year appointments with little/no additional medical care by Kaiser.

    Sounds like abandonment of medical care: infrequent appointments and lack of oversight.

    This has nothing to do with the Stanford treatment protocol, only that patients were given so little medical care so of course results were unimpressive.

    What Stanford uses as its treatment protocol is a different issue.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Being honest with patients about how limited the current treatment options are sounds like a good thing to me.
     
  19. Joyful Warrior

    Joyful Warrior Established Member

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    ME/CFS is an umbrella term for a multi-system illness with at least ten separate illnesses.
    Those illnesses show up in non-ME/CFS patients also, where they have treatment protocols and evidence-based medicine.

    Here are some examples:
    Autoimmunity: treat the separate autoimmune illness and dysfunction, immune modulators.
    Thyroid Subset Illness -- thyroid supplementation
    Neuro-inflammation -- treat using anti-neuroinflammatories, especially those with efficacy in other neuro-inflammatory illnesses.
    Impaired energy production -- this disorder shows up in non-ME/CFS patients also, treat using protocols that catalyze energy production
    Impaired metabolic processes: use existing treatment protocols when those disorders appear in non ME/CFS patients
    Muscle aches, pains -- makes sure diagnosis is correct, and then treat: the pain of ME/CFS is very similar to the pain of MCAS, SFN and EDS. FM often misdiagnosed.
    Antiviral treatment: Test and measure viral titers. High viral titers need to be treated in any case. ME/CFS patients often have compromised immune systems, which means viruses cannot resolve on their own without sequelae. Recent journal articles showed EBV and HHV 6 begin a cascade of genetic changes that launch ME/CFS immune and metabolic errors.
    Cardiovascular, circulatory issues -- established protocols.

    Addressing the co-morbidities:
    Orthostatic intolerance, vertigo, syncope, POTS, vasovagal issues
    Small Fiber Neuopathy, occurs in high percentage of POTS patients
    Mast Cell Activation Syndrome: has established treatment protocol based on EBM, ME/CFS is frequently misdiagnosed when illness is MCAS (Klimas)
    or MCAS is contributory
    Ehlers Danlos Syndrome -- one of the genetic cluster illnesses
    Depression, anxiety
    Irritable Bowel Syndrome/SIBO -- established protocols.
    CSF leak, Chiari, cranial instability -- rule out

    This is an extremely complex illness, beyond the practice of a GP.
     
    Last edited: Apr 2, 2019
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  20. Joyful Warrior

    Joyful Warrior Established Member

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    Doctors often say treatment options are limited for ME/CFS when they are ignorant of the many treatment options of the component illnesses.
     
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