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 helpful in the discussion even when it wasn't directly about the FDA.

Remember when the ex-officio from the CDC wasn't even in the CFS department of that agency? He would give a report prepared by someone else, and when someone at the meeting asked him if the CDC could do something on the disease, he'd have to say he would find out from that department and report back. Now we have the official ex-officio from CDC's CFS program and the leader of the department, both of them, fully engaged. Thank you, Dr. Ermias Belay and Dr. Elizabeth Unger. The difference you brought is tremendous. It took time, and you had to take a lot of abuse, but you're compassion and dedication and intelligence drove you to keep working for us patients, and you are producing some good results. It's evident in what you are doing and how you engage and what you say at the CFSAC meetings. I can't say enough of what a difference it is from what the CDC had before. It takes time to redirect the federal government ship to get it going and making progress in a new direction. Just keep going. Results will surely come.

The NIH ex-officio, Vicki Whittemore, is pushing forward to make things happen in research. She found a way, because she has the will. Why couldn't others do what you have done? Kudos!

And Mister Comedian, the AHRQ guy, Dr. Ted Ganiats, how wonderful that you are knowledgeable, practical and providing some light-hearted relief. I also note your humility. What a breath of fresh air. You were offering suggestions on everything, looking for solutions, pointing out the big picture and real-world obstacles to be considered. And you ought to be a blogger. Your wit needs to be exposed to a larger audience. Next time we do a conference for our disease, we'll get you to do the stand up comedy routine.

And the DFO, Gustavo Cieno. You know, some people just aren't suited for dealing with the public. But you, sir, you are doing a great job. Your gentle voice, respectful tone, and humility are such a contrast to what we've had recently. You are not only eager to serve, but you know how to break down barriers. I hope you stay in this position for a long time.

Where can we see improvement? Miss HRSA, I appreciate you aren't permanently appointed to serve on this committee. But after listening to the discussions and seeing the great need, I hope you'll consider asking to take the position. You already know more than others in your agency.

Mr. VA, Dr. Drew Helmer, you must know that the CFSAC, especially patients, have big issues with how your agency is treating this disease. Some ignorance was revealed in your words. However, I do note a willingness for you to learn and to consider other positions. I hope you'll be willing to work with other government agencies as they have already made needed changes. Hopefully, next time, you'll be able to report some changes in the VA website and a program for getting VA docs to know the distinctive disease. Your agency is lagging behind the rest in this area. But I sense you too can help the VA catch up. We want you to join us. Come into the loop.

Miss Social Security, some good and some not so good. I'm afraid some ignorance was revealed. The first thing you need to know is that our disease is not "chronic fatigue." People don't get disability for a diagnosis for "chronic fatigue." We, the patients, find it offensive to refer to our disease this way. Ignorance is an excuse once. But don't do it again or you'll run out of patient patience and get some wrath. Besides, there are quite a few other labels you can choose from. (rolling eyes) You had some disease specific stats. I remember when we CFSAC had to specifically ask for that. So that's progress. And some of the questions to you seemed a bit unnecessarily overly specific, in my opinion. But you are willing to get that info and come back. Good. One other thing I should mention is that you should have expected to be asked why favorable rulings from judges for applications under all diseases decreased in certain years. I would have expected that, if it is agency-wide, it would already be analyzed by your agency and you would know. And I'm surprised you didn't expect you would be asked that question.

Another point that needs to be made is the big difference we have in collaboration between agencies. Wow! That is really moving things forward. We have some in the government who are forming a team, our team, to help us. Coming from Roll Tide country, I'll say I'm looking forward to lots of touchdowns from this team.

In Part 2, I'll give some recommendations. Stay tuned. As for the committee members, I have some advice, backseat driver talk, if you will. If you have enough patience to indulge my pontification, you might find a helpful nugget. I'll break it up by topic.

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