My letter to the CDC concerning Kaiser Permanente still recommending GET

Webdog

Webdog

Senior Member (Voting Rights)
My letter. The only edit (besides removal of personal info) is the KP web link I included in my email went stale, so I updated it below:
I said:
Sent: 1/16/2018
To: cdcinfo@cdc.gov

Subject: ME/CFS treatment guidelines updated, how do I get my healthcare provider to acknowledge?

Last summer, the CDC updated their treatment guidelines for Myalgic Encephalomyelits/Chronic Fatigue Syndrome (ME/CFS). The CDC no longer recommends Graded Exercise Therapy (GET) as treatment for ME/CFS.

However, my healthcare provider, Kaiser Permanente, continues to recommend GET for their ME/CFS patients. Here is a link showing this:

http://k-p.li/2F9X9h2

So, how do I get Kaiser Permanente to change their treatment guidelines for ME/CFS to be in agreement with the CDC? That is, how do I get Kaiser Permanente to remove their GET treatment recommendation for ME/CFS?

I've contacted Kaiser Permanente several times about this, but 6 months of effort has not gotten the response I hoped for.

Thanks,
xxxxxx
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CDC response (emphasis mine):
CDC said:
RE: CDC-INFO: Inquiry
To: xxxxxxxxx
Delivery-Date: ⁨Tue, 23 Jan 2018

Thank you for contacting CDC-INFO. CDC-INFO responds to inquiries on behalf of the U.S. Centers for Disease Control and Prevention (CDC). In response to your request, CDC recommends that you contact the state health department of your state.

The Centers for Disease Control and Prevention (CDC) is a part of the U.S. Department of Health and Human Services (HHS). CDC is the primary Federal agency for conducting and supporting public health activities in the U.S.

CDC's mission is to collaborate to create the expertise, information, and tools that people and communities need to protect their health through:

• Health promotion;
• Preventing disease, injury, and disability; and
• Preparedness for new health threats.

CDC is not a regulatory or enforcement agency for environmental health issues. CDC cannot provide legal advice or a legal opinion. CDC relies on its environmental public health partners at the local and state level to address and solve these types of problems. Contact your state or local health department for help with your situation.

You can learn more about CDC, its mission, and its activities by visiting the CDC website.

Links to nonfederal organizations are provided as a service. Links are not an endorsement of these organizations or their programs by CDC or the federal government. CDC is not responsible for the content of organization websites found at these links.

Thank you for contacting CDC-INFO. For more information, please call 1-800-CDC-INFO (800-232-4636), visit www.cdc.gov and click on “Contact CDC-INFO,” or go to www.cdc.gov/info. This e-mail was sent from an unmonitored mailbox, and CDC-INFO will not respond to replies sent to this mailbox. If you have questions or comments, please send them via our online form at www.cdc.gov/info.

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). This service is provided by Verizon and its subcontractors under the Networx Universal contract to CDC and ATSDR.

------------------------------------------------------------------------------------------------------------

xxxxx / xxxxxxx

Thank you
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As instructed by the CDC, I've written to California State Department of Health. When I get a reply, I'll post it. I used part of the New York State Department of Health letter from May 2017 as part of my argument.
 
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Esther12 said:
Is there anything new on this I've not seen? Or do you mean White?
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This is new from last year and is from a current CMO (who was listed as one of the presenters on the recent ppt i linked to from swiss re about mental illnesses) not White. I don't think I can post the document I am referring to here as it is confidential but if you would like more info send me a message and we could discuss. I have only recently had access to this document but it was written mid 2017.
 
Webdog said:
Yes, I am planning to contact Healthwise again soon. So far I’ve been unsuccessful with them.
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Just sent 2 messages to 2 different Healthwise contacts. Got a reply to one with a note that says "I have submitted your feedback to our team for review and will respond to you in the next few days with their evaluation.".

When I get the new Healthwise evaluation, I'll post it. In the meantime, for posterity, here's what Healthwise said in their evaluation last year:
Healthwise reply from 2017 said:
From: receptionist@healthwise.org
Delivery-Date: ⁨Fri, 31 Mar 2017

Dear xxxxx,

Thank you for contacting Healthwise. Our subject matter experts on chronic fatigue syndrome/myalgic encephalomyelitis have spent the last year listening to concerns from patients. We attended the CDC Chronic Fatigue Syndrome Project Technical Development Workgroup in September of last year, where we met with physicians, researchers, and representatives from patient advocacy groups. Our participation in that workgroup was illuminating.

After participating in the CDC workgroup and reviewing the most recent studies, we decided it was necessary to update our content, and we are currently doing so to reflect current evidence and clinical practice. In brief, we are making the following changes to our content:
  • Revise the name of the condition from “CFS” to “ME/CFS.” This will reflect the current terminology used by patients and clinicians.
  • Update diagnostic criteria to align with those set forth by the Institute of Medicine. This should reflect the most current diagnostic criteria.
  • Greatly deemphasize graded exercise therapy and cognitive behavioral therapy as treatments. Where we mention GET and CBT as treatments for ME/CFS, we will make it clear that there is not enough evidence to guarantee any benefit from either of them. Our content and medical teams discussed this particular issue at length. We see value in including these treatments; it is possible that patients may still hear the terms or even be prescribed them. And these treatments may still help some patients. But we will be clear that there is not enough evidence to support their use.
  • Create a new topic that teaches the concept of the “energy envelope.” This is a concept that many patients use, and we feel that it will be a helpful addition to our content.
We appreciate your feedback, and we hope that people with ME/CFS will be able to use our content as a resource to fulfill our mission of helping people make better health decisions. Please note that we did attempt to send an email to you on January 17, 2017.

Best of health,

Cindy
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I got a reply from Healthwise, and it's pretty much the same as last year. Basically, they've "deprioritized" GET and CBT, but not removed them. I suppose it's some consolation they have removed all references to PACE.

So effectively, Healthwise has rejected PACE but continues to recommend GET/CBT. One would have thought sinking PACE would be sufficient, but apparently not.

The fact that the CDC has removed GET and CBT didn't seem to make much difference to Healthwise. It's puzzling that Healthwise insists they are "closely following CDC and NICE guidelines", unless by "following" they mean "monitoring" and not literally "following".

Healthwise is also waiting for NICE to update their guidelines in October 2020, almost 3 years from now. I'd mark my calendar, but I don't have a 2020 calendar yet. :bag:

Healthwise "experts" remain convinced that GET/CBT is helpful for a subset of ME/CFS patients, and they are reluctant to completely remove a treatment that might benefit some.

"However, in working with ME/CFS patients, some experts continue to recommend CBT/GET where these interventions provide benefit to the patient. At this time, we will continue to include CBT/GET it in our ME/CFS content, as understanding these treatments may be helpful to some ME/CFS patients."​

I'd truly like to know who "some experts" are, and why their opinion carries more weight with Healthwise than the CDC.
Healthwise said:
Delivery-Date: ⁨Mon, 29 Jan 2018
Subject: RE: Graded Exercise Therapy and Cognitive Behavioral Therapy for ME/CFS

Hello xxxxxxxx!

Firstly- thank you, again, for sharing your concerns about our Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) content. Our internal medical experts, a team of subject matter experts, medical writers, and Medical Doctors, has reviewed your input as it relates to recent changes we made to our ME/CFS content. We understand that ME/CFS is an incredibly difficult and often misunderstood disease. Despite this, we do our best to provide information based on the most up-to-date research and clinical information, which as you know, is constantly evolving, thanks to ongoing research efforts.

At Healthwise, we review medical research and guidelines from reputable medical and government organizations as we create and maintain our health information. Our content is developed collaboratively, and supported by current evidence-based medicine guidelines and practices. Healthwise has a standard of providing information that is supported by scientific research.

We recognize there is controversy about the effectiveness of therapies recommended by the PACE trial and have removed all references to the PACE trial from our ME/CFS content. We have also recently revised our ME/CFS content to deprioritize cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as recommendations to treat ME/CFS. We acknowledge that more research is needed to understand the impact of CBT and GET on ME/CFS patients. However, in working with ME/CFS patients, some experts continue to recommend CBT/GET where these interventions provide benefit to the patient. At this time, we will continue to include CBT/GET it in our ME/CFS content, as understanding these treatments may be helpful to some ME/CFS patients.

As previously stated, we understand this area of research continues to fluctuate, and new studies continue to emerge evaluating the efficacy or impact of CTB/GET on ME/CFS patients. Our medical experts continue to closely follow published guidelines and studies to stay current on these recommendations. We are closely evaluating the recent Cochrane systematic review published last year, and are continuing to synthesize the findings to identify areas our content may need reevaluation. We are also closely following CDC and NICE guidelines, and will closely follow updated NICE guidelines which are expected to be published in October 2020.

We truly appreciate your time and feedback on our ME/CFS health information. We will continue to listen to patients while also following published research closely to maintain the relevancy and accuracy of this information.

Warm regards,

Maija
Maija Teppola
Content Support Specialist | Healthwise

xxxxxxx@healthwise.org | www.healthwise.org

Healthwise helps people make better health decisions.
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Webdog said:
I got a reply from Healthwise, and it's pretty much the same as last year. Basically, they've "deprioritized" GET and CBT, but not removed them. I suppose it's some consolation they have removed all references to PACE.

So effectively, Healthwise has rejected PACE but continues to recommend GET/CBT. One would have thought sinking PACE would be sufficient, but apparently not.

The fact that the CDC has removed GET and CBT didn't seem to make much difference to Healthwise. It's puzzling that Healthwise insists they are "closely following CDC and NICE guidelines", unless by "following" they mean "monitoring" and not literally "following".

Healthwise is also waiting for NICE to update their guidelines in October 2020, almost 3 years from now. I'd mark my calendar, but I don't have a 2020 calendar yet. :bag:

Healthwise "experts" remain convinced that GET/CBT is helpful for a subset of ME/CFS patients, and they are reluctant to completely remove a treatment that might benefit some.

"However, in working with ME/CFS patients, some experts continue to recommend CBT/GET where these interventions provide benefit to the patient. At this time, we will continue to include CBT/GET it in our ME/CFS content, as understanding these treatments may be helpful to some ME/CFS patients."​

I'd truly like to know who "some experts" are, and why their opinion carries more weight with Healthwise than the CDC.
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It may take a Class Action Lawsuit, and some bad press, to get their attention and also Kaiser’s. Sounds like they won’t budge, because it’s almost an admission of guilt, if they remove the CBT/GET references.

Also, I would challenge them on the “these treatments may be helpful to some ME/CFS patients” statement. I would rebut with, “what about the ME/CFS patients who are harmed by your recommendations?”
 
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I realise it's a bit of a nothing reply, but it still makes me jolly to see groups like this saying "and have removed all references to the PACE trial from our ME/CFS content".

In some ways, it's ridiculous that wider problems are still not being recognised, in other ways it's pretty impressive that this £5 million 'definitive' trial is now being widely recognised as an embarrassment.
 
Esther12 said:
I realise it's a bit of a nothing reply, but it still makes me jolly to see groups like this saying "and have removed all references to the PACE trial from our ME/CFS content".

In some ways, it's ridiculous that wider problems are still not being recognised, in other ways it's pretty impressive that this £5 million 'definitive' trial is now being widely recognised as an embarrassment.
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Heathwise seems to be a US based company.
 
Webdog said:
Which puzzles me why a US company is looking to NICE for guidance. One of many questions.
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Since diseases are not restricted by borders and everyone with the same condition will have the same disease mechanism when crafting treatments you use the best data available. Unfortunately fraudulent data was published and is being protected but if a real ME/CFS treatment was discovered in the UK we would all use it no matter our location.
Conversely i would prefer to see international pressure to get the lies retracted (we can dream big)
 
Alvin said:
Since diseases are not restricted by borders and everyone with the same condition will have the same disease mechanism when crafting treatments you use the best data available.
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But data is also available in the US, from the CDC and NIH. The vast majority of people in the US have never heard of NICE or the NHS, so it's extremely odd to prefer NICE as a source over the relevant national agencies which have far bigger and better reputations.

I suspect this is a case of an organization going where they need to, to find the support for their pre-existing conclusions.
 
As has also been pointed out elsewhere, if CBT and GET are removed as treatments, then an income stream is removed for health service providers, and those people who are contracted to deliver those treatments will either be sat around kicking their heels, or let go. So, while it shouldn't, that consideration probably plays it's part when decisions are made about this. And then there is the likely desire for doctors to be able to actually offer something more than "pace yourself, don't go over your limits".
 
I'm not sure about the income stream depending on CBT/GET. When we were in contact with the local ME service run by OT's some time ago, they were employed full time running groups (weekly for 6 or 8 weeks, I think) where they took people through things like what can trigger relapses, pacing, relaxation, activity diaries etc, and an individual home visiting service offering the same advice. No mention then of CBT or GET.

I think the point is more that careers have been built on the validity (!) of CBT/GET and removal of these with acknowledgement that they don't work and do harm would be an almighty blow to their egos and status. And then there's the health insurance industry that 'needs' it to be classed as psychosomatic.
 
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