My letter to the CDC concerning Kaiser Permanente still recommending GET

Me too. I sniggered

 

Very clever

 

No response yet from either the California Medical Board or Kaiser Permenente. I'm in waiting mode.

If you are one of Kaiser Permanente's 13 million members, I would encourage you to call Kaiser Member Services (my experience was it's best to phone them). Let Member Services know:

1. As an ME/CFS patient, your medical needs are not being met.
2. Based on government prevalence figures, Kaiser Permanente has 50,000 - 100,000* ME/CFS patients, and their medical needs are not being met.
   
3. Kaiser Permanente can start to meet the needs of their ME/CFS patients by hiring their first ME/CFS specialist.

* Actually 39,000-116,000 patients, but I rounded.

 

A busy and highly respected specialist (not ME) printed out the article for me, and told me he suspected I had ME. Because of the article, he told me to start an exercise program and keep incrementally increasing the duration and intensity. He is a sharp doctor, and both he and I came to the same conclusion after reading the article.

Not everyone gets into the weeds.

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

 

Typo is fixed, thanks.

@Luther Blissett...such nasty thoughts... now don’t tempt me to use the paddle (again)

 

I appreciate that. I was just trying to point out that Komaroff wasn't exactly giving the therapy recommendations in the review articles a ringing endorsement.

 

Got a call back from Kaiser Member Services today.

Unlike the last person I spoke with, this representative only wanted to hear about my medical needs. Not the systemic issue of lack of ME/CFS patient care.

So, now I'm working on the much narrower goal of getting an outside specialist referral.

But if I can succeed in this, it will be a step forward. I've never heard of Kaiser Permanente agreeing to an outside referral for an ME/CFS patient. It was impossible when I tried 3 years ago (had to pay out of pocket to visit Open Medicine Institute).

 

Insurance companies are masters of wearing you down till you quit, or in this case probably trying to steer you away from forcing their hand.
They may send you and if you keep asking for systemic fixes threaten to cut you off after you've had a few appointments to keep you under control

 

My request for access to a ME/CFS specialist will soon be heard by a Kaiser Permanente committee. If denied, there will be an appeal process.

I don't want to jeopardize the process in any way, so no details at this time, particularly in a public forum. If anyone has questions, message me.

Fingers crossed.

 

Just an update on items currently pending:

1. Request to Kaiser Permanente for ME/CFS specialist care - DENIED
   
2. California Department of Managed Healthcare - Waiting for a response to my complaint that no health plan in California should be recommending GET for ME/CFS. - DENIED
3. Medical Board of California - Took a month to simply acknowledge receipt of my "scope of practice" complaint about GET/CBT. Not expecting much.
   
4. Complaint to Kaiser Permanente to stop recommending GET/CBT for ME/CFS - Ongoing, but not expecting anything.

 

Received a 2 page written letter from the California Department of Managed Healthcare (DMHC) today, regarding the issue of Graded Exercise Therapy being prescribed for ME/CFS. They said:

I heard from a reliable source that the California Department of Managed Healthcare was able to get inappropriate autism treatment changed a few years back, so I had higher hopes for their response.

I don't disagree with the decision. I've no doubt Kaiser Permanente wasn't in violation of any actual California Health Plan Law. And their treatment of ME/CFS is likely just as appalling as the treatment you'd get at any other Health Maintenance Organization (HMO).

Roughly 100 million people in the United States belong to HMOs (13 million with Kaiser Permanente), and GET/CBT/antidepressants are still the bread and butter of ME/CFS treatment nationwide.

So, I'm still stuck in the same place. This is a state issue, and from the letter, apparently the California Department of Managed Healthcare is unable or unwilling to change California health plan law.

So, how does California Health Plan Law actually get changed? Who in the bureaucracy has the power to change California Health Plan Law? Answering these 2 questions will be my project for next week.

 

a class action?

 

My request for ME/CFS specialist care from Kaiser Permanente was denied.

I had argued that my doctors, while competent, know absolutely nothing about ME/CFS. Also, that any other severely ill patient would be able to see a doctor experienced in their disease and familiar with current medical research.

Multiple Sclerosis patients can see a doctor with MS experience. Diabetes patients can see a doctor with diabetes experience. Parkinson's patients can see a doctor with Parkinson's experience. Epilepsy patients can see a doctor with epilepsy experience.

However, if you are a patient with ME/CFS, you are not permitted to see a doctor with ME/CFS experience. Some might consider this discrimination.

Kaiser Permanente says my primary care doctor is able to provide the recommended ME/CFS treatments:

• Exercise
• Supportive Therapy
• Antidepressants

and that that fulfills their obligation under the plan.

 

SO hard to click like on that one, @Webdog. It absolutely *is* discrimination. And ignorance. Is The Attorney General's office able to deal with this I wonder?
Or Surgeon general at the federal level? Is there a state level for surgeon/physician general?
IT's 2018. Time to change this bigotry. Thank you for your amazing efforts thus far.

 

Thanks.

My primary care doctor listens to me and now understands increased exercise is not an appropriate treatment. I currently have no issues with my primary care doctor, except that he has zero ME/CFS experience.

So, is my ongoing treatment plan of an antiviral + LDN still appropriate 2 years after it was prescribed at OMI? I have no idea, because I can't talk to a doctor with any ME/CFS experience.

 

But a specialist can do further testing to rule out other rare diseases (including genetic testing) and would be able to trial off label treatments that some patients have found helpful that your PCP knows nothing about (points you can appeal with).
Also a specialist would know about the current research into ME/CFS that demonstrates that the therapies they recommended have poor efficacy which evidently Kaiser does not know. Using these harmful treatments could make your condition worse increasing their costs.
Have you considered getting legal assistance, not sure how to pay for it unless there is legal aid in your state but it might be worth looking into, since Kaiser just wants to wear you down till you go away.

 

I do not feel legal action is the right approach. Besides, the California Department of Managed Healthcare already ruled that Kaiser Permanente has followed their plan obligations. There is no law against recommending GET+CBT+antidepressants for ME/CFS. There is no legal requirement that a healthcare plan provide specialist care for ME/CFS.

I'm not out to villianize Kaiser Permanente. To be honest, I think they provide as good or better care than most HMOs (a low bar, I admit). If I had cancer or MS, I would get first rate care. But ME/CFS discrimination continues. Yet that is more a medicine problem than a Kaiser Permanente problem.

In the end, Kaiser Permanente and every other HMO will drop GET/CBT/antidepressants for ME/CFS simply because these treatments don't work. Patients don't get better and it makes no sense medically or financially to continue pushing ineffective treatments. It might take a few years, but that is the inevitable outcome.

Things are changing, perhaps not as quickly as we like. But they are headed in the right direction.

 

Fair enough

Indeed, though your goal seems to be to convince them to do better.

Its not quite this simple, a provider is in the business of providing care, if they provide bad care they are of course not helping patients. The reason for providing sub optimal care varies in disease to disease but in our case its because of shysters promoting fraudulent treatments and lack of proven alternatives.

No unfortunately they won't. If liars with credibility tell them to this is the standard of care they will keep it, it not working won't sway them because they follow what the "experts" tell them plus relying on alternative facts that show it work is more then enough to keep it this way.
The only way it will change is if they are convinced either by advocacy or advances in science. Discrediting and forcing out the agents of CBT/GET may provide an assist.

 

BUT, aren't exercise and antidepressants contra to the IOM report as AHRQ (or whatever the appropriate entity) have removed recommendations for CBT and GET.
IOM also clearly stated that ME is not of psychological origin, so why antidepressants?