Showing posts from 2018

December CFSAC Part 2: Touchdowns Will Win the Game

In this Part 2 of my review of the December 2017 Chronic Fatigue Syndrome Advisory Committee meeting, I'll address a question discussed there: Should we target specialists or primary care doctors in a physician education project?

Dr. Jose Montoya said in the meeting that the best place for the type of clinical care SEID patients need is in the specialist setting. I absolutely agree. Those who are our experts now give a long time to each patient, an amount of time that is not profitable for each patient in a primary care setting. Our system is still set as a pay for service.
"It's not unusual for primary care doctors' appointments to be scheduled at 15-minute intervals," says a 2014 USA Today article. This is not a match for our multi-system, multi-symptom, multi-treatment disease.

Setting aside the time element, there is also the level of knowledge needed. Specialists are specialists because they know more than a primary care doctor about a segment of diseases.…

December CFSAC Commentary (Part 1)

The December Chronic Fatigue Syndrome Advisory Committee meeting reflected much progress. It's refreshing to see some new faces taking up the advocacy. As one group let's go or moves on or dies, another takes hold of pushing the government forward, giving voice to the patient experience. And they do so with such credibility, bringing passion and reasonableness, and real-world patient and professional experience. Our patient and patient organization advocates are themselves experts. They are impressive in what they bring to the discussion.

And I just can't get over the difference in attitude and effort and knowledge of our current ex-officios (except a few, of which I'll address later). I remember when the FDA ex-officio slept during the meetings--and when he had to participate, showed himself to be a real prick. I just can't get over how knowledgeable the current FDA rep Dr. Keith Hull is about our disease. And I've not seen him before. Very impressive. He was…