Trial By Error: Kaiser Permanente Changes Course

Not according to any officially recognized assessment criteria
Misdiagnosis does happen but thats a different issue
Comorbid conditions are not uncommon and exist for every disease one can have

 

He does come across as sincere. But he is unaware of the complexity of the illness and current research,
and is misguided in his alignment with the CDC.

 

Many PCPs feel overwhelmed with a complex illness like this and don't know where to begin.

Regardless of there not being evidence-based treatments specific to ME (except for some comorbid conditions and complications), I agree with you that there needs to be an actual specialist. To diagnose accurately, and communicate with the other doctors about the nature and implications of the disease, and help with things like social supports, adaptive supports, and accurate charting. And enroll in clinical or epidemiological trials, if available.

I suspect the first step to getting these specialists is setting up a specialty certification, which has been discussed, but not implemented. It's been suggested that a subspecialty would be quickest and easiest.

 

Kaiser Permanente Northern California now allows doctors to give a ICD-10-CM G93.3 "Myalgic Encephalomyelitis" diagnosis.

In the past, it's only been a ICD-10-CM R53.82 "Chronic fatigue, unspecified" diagnosis, regardless of diagnostic criteria or symptoms. This shows up on the kp.org website as "Chronic Fatigue Syndrome".

Not sure about regions outside of Northern California, but would expect that it's all the same diagnostic system.

If you are a Kaiser Permanente member and want a Myalgic Encephalomyelitis G93.3 diagnosis, send a secure message to your doctor requesting the change. It might help to explain that Kaiser Permanente is moving away from using "Chronic Fatigue Syndrome". This is in line with the 2015 IOM (NAM) report, which recommended no longer using Chronic Fatigue Syndrome.

From the patient perspective, this simply changes "Chronic Fatigue Syndrome" to "Myalgic Encephalomyelitis" on the website under "Ongoing Health Conditions" when logged in on the kp.org website.

 

Woop! We're going to party like it's 1969!

Kidding aside, awesome work. Hopefully this cascades into further changes.

 

I wonder if there's any way we can get an update on progress being made at KP?

Dr. Olson's support is a big step in the right direction, but educating Drs. about ME/CFS and equipping them to help their patients with ME will be a very large task.

Any plans for follow up, @dave30th ?

 

Ha! Very interesting. I e-mailed Steve Olson last week to do a follow-up and we've scheduled a time to talk. And then I just saw your note. So we're on the same page (or screen, I guess)...

 

Thank you for all your hard work Jeff!!! ( @Webdog )

As a Kaiser SoCal patient, I may directly benefit. At the moment I'm not aware of a single doctor in our large system that treats ME/CFS or has much knowledge about it.

Well done. Thanks to you, @dave30th, as well.

Best,

Bill

 

This is going to take a few years, unfortunately. Baby steps at this point.

Kaiser Permanente NorCal doctors were offered a ME/CFS training (not mandatory) and all have been given a written update on ME/CFS. The goal, as I understand it, is to eventually fold ME/CFS into the existing integrated care model used for other serious chronic diseases.

Tuller's upcoming article(s) should provide more info.

(some random personal notes follow)
Personally, I've given up the "activism", but keep tabs on the amazing things so many of you are doing.

Day-to-day living requires all my energy (and then some). Let healthy doctors fight for us for a change, so that we can focus on living our lives the best that we can.

At this stage, I feel my energy is better spent participating in research. I'm fortunate to live in a location where research is plentiful.

I further feel that societal/government repercussions of climate change and related ecosystem collapse will soon make privacy and related topics extremely important in our lives. So I recently started an online privacy thread on S4ME.

 

I am one who very much appreciates the thread on privacy. Thank you.

Would you mind providing just a brief statement expanding on the issue of privacy and ecosystem collapse?

 

Just know how much I appreciate the effort it took. I get it. And I honor what you were able to accomplish.

I'm stunned that we are still fighting such battles, but that's where we are.

Well done Jeff!

Bill

 

@dave30th It has been a year since you published your interview with Steve Olsen at KP. Are you planning a follow-up to see if there has been any progress?

 

Kaiser unfortunately never changed course.

But reality has a way of asserting itself.

https://twitter.com/user/status/1358490465209876481


(Edit: turns out it's a different Kaiser, not Soze, though)

 

Unfortunately, it appears that Dr Steve Olsen has retired from NorCal Kaiser.

I tried to reach him up in Santa Rosa to see if he knew of a physician in SoCal Kaiser who he'd recommend to me when I discovered he'd retired.

Thanks to the heads-up and hard work by Jeff @Webdog I was successfully reclassified as ICD-10-CM G93.3 by Kaiser. To my awareness there are no physicians in the massive health system who have ME/CFS as a speciality or sub-specialty.

Dave @dave30th, if you happen to be in touch with Dr Olsen and he knows of physician with SoCal Kaiser he might recommend, I'd be grateful for a referral. I've had no luck finding a doctor with a rudimentary understanding of this illness thus far in my health system.

Bill

 

Kaiser Health News is not affiliated with Kaiser Permanente, the health care system, though from my experiences with Kaiser Permanente, I am no big fan. The hoops you have to jump through.

 

Hah! Looks like it happens a lot, they even mention it several times in their about us:

 

Made even more confusing by the fact that "Kaiser", the HMO, is actually three distinct legal entities:

https://en.wikipedia.org/wiki/Kaiser_Permanente

Gotta love the American health care system.

 

Twitter thread

 

Recovering from long-term COVID-19

https://healthy.kaiserpermanente.or...nformation/recovering-from-long-term-covid-19