My letter to the CDC concerning Kaiser Permanente still recommending GET

Or just maybe a few of these “coronal-loops” are helping

 

I think you're onto something.

I searched the Medical Board of California website, and found surprisingly little on ME/CFS. Apparently, they had a presentation on the topic in 2012, but there's no actually record of what was presented.

The only written info is in an "Action Report" pdf from 1999. See pp. 6-7.

Here is the Medical Board of California "Best Approach" treatment from the 1999 pdf action report.



Edit: More info from the same 1999 pdf report.

 

Excellent detective work!

It’s an eye opener, but now I better understand where Anthony Komaroff is coming from. Makes me wonder, how many other people have thrown us under the bus?

 

These comments are from 1999. Some clinicians and researchers have changed their views as they have seen more PwME and have kept up with Biomedical research.

The BPS brigade are stuck in the last decade in their views.

 

You may be correct that some have changed their views. I hope you are correct.

These 1999 ME/CFS documents were the most current I could locate on the California Medical Board website. I wanted to document this before contacting them.

Is the Calfornia Medical Board simply not aware that things have changed and that federal agencies (CDC, AHRQ, NIH, NAM, etc.) no longer recommend GET/CBT? This is certainly possible, perhaps even likely. The CDC certainly has made no effort to disseminate information that changed in their own "stealth" ME/CFS website update last summer which removed GET/CBT.

 

Fair enough, but I am referring to Dr Kamoroff.

Here is a quote from an editorial Kamoroff authored in 2015 (my bolding), from the Annals of Internal Medicine.

http://annals.org/aim/fullarticle/2...yelitis-chronic-fatigue-syndrome-real-illness


“Are There Proven Treatments?

The AHRQ-commissioned review of treatment trials, published in this issue (2), finds that counseling therapies and graded exercise therapy might help improve fatigue and function in some, but not all, patients; that not all trials show a benefit for the average patient; and that neither treatment is curative. Authors of the review warn that exercise therapy must be pursued very cautiously because several trials show that exercise leads to more adverse events and withdrawals. This is not surprising, given that postexertional malaise is a cardinal feature of the illness (1, 5, 8). “


Here is how the journal describes itself:

http://annals.org/aim/pages/about-us

“Annals of Internal Medicine has a large readership that includes the 148,000 members of the American College of Physicians and many more physicians and researchers worldwide who read the journal via institutional subscriptions.”

 

I suspect that some of these boards, the CDC and NICE are reluctant to publicise, with a loud fanfare, that these treatments are no longer recommended. due to potential harms as it could expose them to lawsuits and other comeback.

 

The CDC and other US government agencies are essentially immune to lawsuits. The exception is if they choose to allow themselves to be sued. Needless to say, that almost never happens

 

Is there a way to change this?

 

Overthrow the government? But basically, if we don't like what government agencies are doing, the only supposed solution is to elect a different president.

 

We can use the courts with varying success though as ME/CFS patients we don't have much energy or money

 

I phoned the California Medical Board, and was given an email address to write to. My issue was referred to as a "Scope of Practice" issue.

Apparently, I send an email to the California Medical Board investigator, they investigate, and then reply in a few days.

For posterity, below is my email to the California Medical Board. When I receive the reply, I'll post that.

 

What started as an effort to get Kaiser Permanente to remove GET as a recommended treatment for ME/CFS turned into trying to get Healthwise to stop recommending GET. Now I'm attempting to get (hah!) the State of California to advise physicians to no longer recommend GET (like the New York State Department of Health did last year).

As a sort of documentation, this is a brief summary of my efforts to date:

• Kaiser Permanente --> Formal grievance filed with Member Services. Subsequent contact, they claimed they never received, so grievance resubmitted.
  
• Healthwise --> Reevaluated guidelines. Have deemphasized GET/CBT, but still include in materials.
  
• CDC --> CDC is not an enforcement agency. Contact your state health department. CDC is working on new materials for healthcare providers.
  
• California Department of Public Health (CDPH) --> This is a "Scope of Practice" issue for the California Medical Board, not us.
  
• California Medical Board --> Awaiting reply.
• California Department of Managed Healthcare --> Not yet contacted.

 

Like a (Web)dog with a bone..

 

On a related note, I thought I would ask Kaiser Permanente member services if they have an ME/CFS specialist on staff. I'm certain they don't, but I'd really like them to know there is a need.

With 12.2 million members, Kaiser Permanente should have about 50,000 members with ME/CFS (assuming 0.4% have it).

When I hear back, I'll put a note in this thread. I'm really curious to hear Kaiser's answer as to why they don't have an ME/CFS specialist.

Note I'm pretty happy with my Kaiser primary care doctor, but his ME/CFS knowledge is limited. And going out of network to see an outside specialist is very expensive.

 

Even tiny changes could affect healthcare for tens or hundreds of thousands of patients. Kaiser Permanente has roughly 50k ME/CFS patients. The state of California, around 150k.

Besides, it's boring being housebound.

 

Today, I was bored and "unrested".

I decided to try a different strategy with Kaiser Permanente, to see if it got better results. Rather than trying to get them NOT to do something (stop GET), why not try to get them TO DO something instead?

My thinking: If Kaiser Permanente simply hires a real ME/CFS specialist, then the whole GET/CBT issue becomes moot.

So I phoned Member Services and made the following complaint:

• Kaiser Permanente members (roughly 50,000) with ME/CFS are not adequately having their medical needs met.
• In order to provide the needed medical care for ME/CFS patients, Kaiser Permanente must hire an ME/CFS specialist.

The representative I spoke with appeared to take my complaint seriously and even escalated it to "urgent". He promised a case manager would call me back within 72 hours to discuss further. Not getting hopes up too much, but this was a pleasant interaction. Fingers crossed.

PS: I was also told Kaiser just released their new membership numbers... 13 million members, up from 12.2 million. That's a lot of new money in the coffers. Cash to hire a specialist that would serve 50,000 members should not currently be a problem if the need is recognized, I expect.

 

Here's to you, Webdog
Excellent communications all around, and thank you for sticking to it. I especially love the pivot from what not to do to what to do
I may have to move back to California once you're through with them!

 

I view this somewhat differently.

Dr. Komaroff was writing an editorial called "Is ME/CFS Real?" in an issue of The Annals of Internal Medicine in which there were two separate review articles on ME/CFS: one on diagnosis and the other on treatment.

So, he mentions the findings of the treatment review, but then goes out of his way to highlight the shortcomings of those findings - something you might not pick up by reading the treatment article itself, because it's down in the weeds. This would be especially true if you just read the conclusions in the abstract of treatment review article:

What's also kind of odd is that, although the AHRQ apparently commissioned the Pacific Northwest Evidence-based Practice Center, et al. to review the data, the review states:

So, I view this as Komaroff undercutting the treatment analysis made by Oregon's Northwest Evidence-based Practice Center, et al. (not the AHRQ) without coming flat out and saying it's wrong and/or underplays the risks.

 

Leapt out at the internal 8 year old part of my brain I'm afraid.