Thank you for the article and for breaking things up into readable chunks.
Recovery is described as a holistic process of learning how to live in harmony with oneself through remissions and relapses. Relinquishing attachment to complete recovery and focusing on general wellness and self-improvement instead of an absolute cure are described by participants as essential steps.
While a good interim step, this gets the dander up along the lines of the discussion right now in the thread about CFSAC -- e.g. we really need to get a cure, people.
So even though this above is essentially what I heard from Dr. Montoya at Stanford and they are seeing improvements in people who take the pacing course (I was quoted 30-60% improvement from baseline before the course for people who implement its suggestions, not sure how formally they measured that), I do get concerned that the prospect of other promising therapies, or incorporating our own search for remedies into the pacing regime are not even raised in the context of the course (If they are, I missed it).
As though you "must learn to live within your condition." That's just another way for the medical establishment to say "we don't care enough to pursue this aggressively."
Part of the reason I think the course is structured that way is that Bruce (story here:
http://www.recoveryfromcfs.org/ ) recovered without meds, with pacing alone, after 7 years. While inspirational, that's not going to be everybody's story, I hazard.
We need the full patient centered approach outlined below,
and the self pacing,
and the support to pursue potential remedies,
and a full research agenda, with funding,
and disability benefits that recognize the severe and long term nature of the condition...you get my drift.
"Empowering the patient to take charge of his or her own recovery process should be a primary goal for the health care provider.
Variables between individuals with CFS should be taken into account when helping the patient craft a treatment plan that is appropriate for them.
Providing a supportive, nonjudgmental environment and a bias-free diagnosis is also important.
Since CFS symptoms often span the boundaries of several medical subspecialties, a management team should be in place to address all facets of the patient’s illness.
Providing a longitudinal, consistent, and unified record of the patient’s subjective complaints and laboratory tests would be crucial in applying for disability benefits.
Creating a support structure that can help the patient cope with changing symptoms and navigate relapses is a final recommendation."
Wouldn't all that be nice!