Trial By Error: Kaiser Permanente Changes Course

CFS_for_19_years

CFS_for_19_years

Established Member (Voting Rights)
http://www.virology.ws/2019/03/11/trial-by-error-kaiser-permanente-changes-course/

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.
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ME/CFS patients with Kaiser Permanente deserve much better than they have been offered in the past. They need real hope that their care will improve, and better support from educated doctors.

Roughly 100 million in the US belong to managed healthcare, and ME/CFS care is almost universally abysmal. Hopefully other HMOs are watching Kaiser Permanente change direction on ME/CFS.
 
Webdog said:
ME/CFS patients with Kaiser Permanente deserve much better than they have been offered in the past. They need real hope that their care will improve, and better support from educated doctors.

Roughly 100 million in the US belong to managed healthcare, and ME/CFS care is almost universally abysmal. Hopefully other HMOs are watching Kaiser Permanente change direction on ME/CFS.
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Agreed.
Though i think we need to train an army to do what you did here and "educate" every other health care company. From reading your various threads it was a lot of work on your part and a great deal of persistence
 
Webdog said:
ME/CFS patients with Kaiser Permanente deserve much better than they have been offered in the past. They need real hope that their care will improve, and better support from educated doctors.

Roughly 100 million in the US belong to managed healthcare, and ME/CFS care is almost universally abysmal. Hopefully other HMOs are watching Kaiser Permanente change direction on ME/CFS.
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Couldn't have come at a better time!
 
Alvin said:
Came here to say this
All hail @Webdog
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Wow! All hail @Webdog indeed!

There's just paragraph after paragraph of amazing statements from Dr. Olson in that article, such as...
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.
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Webdog for Prez!

Oh say can you see
by the dawn's early light,
our furry little friend
with the great big sharp bite!


:thumbup: :thumbup: :thumbup:

:hug:

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"How did we remain ignorant for so long?"

Whatever the final explanation for that is, it will gave to include the word 'wilful' in it. :grumpy:
 
This whole section rings in my head as exactly what I realised when first introduced to ME by IiME. The first paragraph is as important as the second I think.


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.
 
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.
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So nice to hear this.
 
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