My letter to the CDC concerning Kaiser Permanente still recommending GET

MEMarge said:
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?
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In my reply to member services, I stated that none of their treatment recommendations were appropriate. In particular, increased exercise is contraindicated for ME/CFS.

Also, since I don't have depression, there is no point in an antidepressant. As you say, according to the IOM, ME/CFS "is a medical — not a psychiatric or psychological — illness." I was also sure to mention that no US federal agency recommends GET/CBT, including CDC, NIH, AHRQ.

That said, in answer to your question, I point a finger at the CDC (bolding mine):
CDC said:
Depression, Stress, and Anxiety

Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.

Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patient’s psychological condition, they may recommend seeing a mental health professional.

https://www.cdc.gov/me-cfs/treatment/
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Hi Webdog,
Your doing some awesome work on our behalf and I just want to express my appreciation for what your doing.
For years I had Kaiser and found they really stick to there guns on the CBT and GET. I had a Primary Care doc and a
Rheumatologist who truly believed I was sick and did all they could to help me within the limits placed on them by the system.
Things seem to move so slowly but here's hoping your work pays off with changes soon.
 
Ron said:
Hi Webdog,
Your doing some awesome work on our behalf and I just want to express my appreciation for what your doing.
For years I had Kaiser and found they really stick to there guns on the CBT and GET. I had a Primary Care doc and a
Rheumatologist who truly believed I was sick and did all they could to help me within the limits placed on them by the system.
Things seem to move so slowly but here's hoping your work pays off with changes soon.
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Thanks. I also agree that Kaiser Permanente has many great doctors, who are restricted in what they can do to help.

I truly think that once Healthwise's removal of GET/CBT is reflected on the Kaiser Permanente website, then Kaiser will be forced to abandon these treatments.

Also, I hold out hope that the CDC's new "Information for Healthcare Providers" will emphasize GET/CBT are no longer recommended treatments, and that increased exercise in particular is contraindicated.
 
After pondering my rejection by Kaiser Permanente for specialist care, I went back to the California Department of Managed Healthcare website. There it states under "Your healthcare rights" this item: "To have an appointment with a specialist when you need one."

So, according to the state, I do have the right to specialist care, just like any other patient with any other medical condition.

At Kaiser Permanente, MS patients get specialist care. Parkinson's patients get specialist care. Epilepsy patients get specialist care. But ME/CFS patients don't get specialist care.

I think my most productive next step is to file a complaint with the California Department of Managed Healthcare saying my state right to specialist care is being denied. When I have the energy.
 
An update on where things stand. I've included some side projects not mentioned previously.
  1. Kaiser Permanente
    • Request for ME/CFS specialist care. - DENIED
      • Appeal denial to the Calif Dept of Managed Healthcare. - TO DO
    • Complaint to stop recommending GET/CBT for ME/CFS - NO LONGER RELEVANT
      • KP has stopped recommending GET/CBT, and now recommends "exercise" + "supportive therapy". Not pursuing any further until new Healthwise content (removing GET/CBT) is reflected on the KP website. - ON HOLD
  2. California Department of Managed Healthcare
    • Complaint that no health plan in California should recommend GET for ME/CFS. - DENIED
    • Complaint that my state right to specialist care has been denied by Kaiser Permanente - TO DO
  3. Healthwise
    • Request removal of GET/CBT from their medical content - SUCCESS
    • Further request to mention potential harms from GET - ONGOING
    • Further request to update WebMD content - ONGOING
  4. Medical Board of California
    • Complaint that GET should be declared outside the "scope of practice" for all doctors in California. - ONGOING
  5. Osteopathic Medical Board of California
    • Complaint that GET should be declared outside the "scope of practice" for all osteopathic doctors in California. - ONGOING
  6. NIH
    • Complaint that GET/CBT still being widely prescribed by clinicians. Asked them to help change this. - DENIED
    • NIH "we are not an enforcement agency" and "please file a complaint with American Medical Association.
  7. CDC
    • Complaint that GET/CBT still being widely prescribed by clinicians. Asked them to help change this. - DENIED
      • CDC "we are not an enforcement agency" and "please file a complaint with your state dept of health.
  8. California Dept of Public Health
    • Request they make a statement that GET/CBT for ME/CFS is inappropriate and potentially harmful. - DENIED
      • Directed to filed a complaint with Medical Board of California.
 
Valentijn said:
His failure to use a complete absolute is not a concession that he believes exercise may ever be harmful to ME/CFS patients. Here's the full context of that passage:


His "maybe exercise should be avoided" statement is about as meaningful as conceding that "maybe aliens cause ME", because anything is possible. I really don't see the point of trying to nail him down with this statement. It would never stick as an admission of knowingly causing harm, and it's far enough out of context that it doesn't make sense to use it to argue anything else either.
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his statement looks like it was ripped of from a form of cbt for heart patients because some people who have heart attacks go on to being very anxious towards the possibility of another heart attack from overexertion. and people assume he is an intelligent man expert in his field damn this is depressing but many people myself included assume that well paid professionals actually understand things they talk about.
 
Webdog said:
At some point, I might file a complaint with the American Medical Association, but I think my energy is better spent at the state level.
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I think a coordinated group effort at the level of the AMA would be the best approach. In the end this ought not to be a state-by-state issue, it is a human rights issue and thus correct policy should be instigated across the country (and world!)

I think your instinct is correct that an individual writing to the AMA would be spitting into the wind; the AMA is entirely a political entity, so we would need a letter/petition signed by many individuals and patient organizations. They are a really powerful lobbying force, so getting their attention with a large group and strong evidence could prove very useful in the end.
 
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