My letter to the CDC concerning Kaiser Permanente still recommending GET

Webdog said:
Response from the California Department of Public Health yesterday, after more than a month of emails and phone calls. Basically, "it's not our job, please contact another government agency".

If the CDC had sent me to the correct state department, it would have saved a lot of time. :rofl:


Additionally, I recently spoke in person with a longtime California lobbyist. He told me the correct contact is the California Department of Managed Healthcare. So that's another state agency to follow up with.

Good thing I have tons of energy and no brain fog, or this might be a challenge for me. :cautious::dead:
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Or just maybe a few of these “coronal-loops” are helping :laugh:
 
MErmaid said:
Or just maybe a few of these “coronal-loops” are helping :laugh:
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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.

bestapproach2.png

Edit: More info from the same 1999 pdf report.
CaliforniaMedicalBoardb2.png
 
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Webdog said:
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.

View attachment 2027

Edit: More info from the same 1999 pdf report.
View attachment 2029
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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?
 
MEMarge said:
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.
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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.
 
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MEMarge said:
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.
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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.”
 
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Webdog said:
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.
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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.
 
MEMarge said:
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.
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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 :p
 
Valentijn said:
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.
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We can use the courts with varying success though as ME/CFS patients we don't have much energy or money :emoji_sob: :emoji_face_palm:
 
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.
Webdog said:
Subject: Scope of Practice query: Graded Exercise Therapy inappropriate for ME/CFS
Sent: March 5, 2018
To: webmaster @ mbc.ca.gov

xxxx:

I’m writing to you in the hopes the California Medical Board will stop Graded Exercise Therapy (GET) from being recommended by doctors in California as treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

I hope we are in agreement that an inappropriate and potentially harmful treatment with no reliable evidence should not be standard medical care for patients. And yet, that is exactly the case when physicians recommend GET to their ME/CFS patients.

I would like to see this changed. I would like to see GET no longer prescribed by doctors for ME/CFS. I would like to see health care improved for the approximately 150,000 ME/CFS sufferers in the State of California.


GET continues to be widely prescribed to ME/CFS patients. Kaiser Permanente recommends GET. The Mayo Clinic recommends GET. Healthwise recommends GET.

In contrast, due to lack of evidence of effectiveness, every US federal agency that I am aware of has stopped recommending GET as treatment for ME/CFS. The CDC no longer recommends GET. The AHRQ no longer recommends GET. The NIH no longer recommends GET.

The New York State Department of Health has taken a position against GET for ME/CFS, with the NY State Health Commissioner Howard A. Zucker writing in May last year:

"In the past, cognitive behavior therapy (CBT) and a graded exercise therapy (GET) were recommended as treatments. However, these recommendations were based on studies that included patients with other fatiguing conditions. Because of the hallmark intolerance to exertion of ME/CFS, exercise may actually worsen the health of those living with this disease."​

Unsurprisingly, ME/CFS patients frequently report significant long term health deterioration following treatment with GET.


As you gather your information about ME/CFS and GET, you will no doubt encounter the PACE Trial. PACE was a large trial in Britain studying the effectiveness of both GET and CBT for Chronic Fatigue Syndrome, and is the primary source of “evidence” for the use of GET in ME/CFS. Although significant claims were made by PACE authors, the long term followup results were null. PACE methodology has been widely rejected internationally.

Regarding PACE and it’s flaws, I would encourage you to read David Tuller’s (UC Berkeley) “Trial By Error” series of essays, which can be found at http://www.virology.ws/mecfs/

For peer reviewed papers on the shortcomings of PACE, I would point you to the recent special “PACE” edition of the Journal of Health Psychology at http://journals.sagepub.com/toc/hpqa/22/9

Additionally, if you would like to directly speak with an ME/CFS expert concerning GET and ME/CFS, I would highly encourage you to contact Dr. Ron Davis or Dr. Jose Montoya, both at Stanford University. Or David Tuller at UC Berkeley.

For a good current summary of current medical understanding and treatment recommendations for ME/CFS, I would recommend the Winter Edition of Family Doctor: A Journal of the New York State Academy of Family Physicians at http://www.nysafp.org/News/Family-Doctor-A-Journal-for-the-NYSAFP


Together, I hope we can stop the inappropriate treatment of Graded Exercise Therapy from being prescribed to ME/CFS patients.

If you have any questions or need any additional information, please don’t hesitate to contact me.

Sincerely,
xxxxxxxxxx
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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.
 
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.
 
Today, I was bored and "unrested". :innocent:

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.
 
MErmaid said:
Fair enough, but I am referring to Dr Kamoroff.

Here is a quote from an editorial Kamoroff authored in 2015 (my bolding), from the Anals 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.”
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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:
Conclusion:

Trials of rintatolimod, counseling therapies, and graded exercise therapy suggest benefit for some patients meeting case definitions for CFS, whereas evidence for other treatments and harms is insufficient. More definitive studies comparing participants meeting different case definitions, including ME, and providing subgroup analysis are needed to fill research gaps.
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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:
The findings and conclusions in this document are those of the authors, who are responsible for its content, and do not necessarily represent the views of the Agency for Healthcare Research and Quality (AHRQ). No statement in this report should be construed as an official position of AHRQ or the U.S. Department of Health and Human Services.
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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.
 
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