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Final Comments
Progress is slow but steady
And so some final comments and looking forward, I would like to echo the message that's on the Solve ME/CFS Initiative web page, it's on some of the pictures they have down at the bottom, over and over again, they have this tagline “We will move forward, we will move forward”. That is exactly correct, progress is slow but it is steady. I think the convergence of the IOM report, NIH's pathways to prevention and increased interagency dialogue has really given impetus to this field. There's exciting new findings as has been shown by the speakers in this webinar series, and the first PNAS paper which just appeared. And I want to emphasize that data is really essential for progress and standardization of data methods is advancing, CDC has a collaboration with the NIH, National Institute of Neurological Disorders and Stroke, to produce common data elements for ME/CFS and then NINDS, on their website, has a whole lot of common data elements for other illnesses and it will be absolutely fantastic to have ME/CFS join this group, and I think this will help in data sharing and moving the field forward.
And finally I want to thank the MCAM Study Group and Study Participants, and my Division, and the Branch colleagues for helping me and being the reason that this program exists.
Q & A Section
Dr. Nahle
Thank you, thank you, Dr. Unger, I appreciate this overview, you summarized a lot of things for us today. You started framing the conversation in the public health format, and then you told us about the control and prevention
strategies at the CDC for ME/CFS, you also summarized the complexity analysis diagrams of ME/CFS and then discussed the multi clinic site, its inception and some updates, mainly the Cortisol Project and the Natural Killer Cell Function Project, and then you ended up with the publication plan and the role of the CDC in the dissemination of the
Institute of Medicine report so I appreciate all that.
We received many questions, as you can imagine, so I will try to summarize them here. I prioritize the questions from our audience over mine although I have a couple myself and I'm itching to ask you, let me do this one because it's representative of probably 10 questions and I felt, I'm going to ask it exactly the way it is it came. It's about the elephant in the room, really one of the elephants, the Cognitive Behavioral Therapy and the Graded Exercise Therapy, that I'm going to ask it exactly as it came, it was measured and it encapsulates whats on people's mind
Here's the question, citing the CDC, the Mayo Clinic website lists Cognitive Behavioral Therapy and Graded Exercise
as treatment for CFS, since we know this doesn't work and may hurt is CDC doing anything to reeducate institutions such as the Mayo Clinic.
Dr. Unger
OK yes, there have been a lot of discussion about therapy and, let me just say that first of all our education, our stakeholder meeting, is about the IOM recommendations which, unfortunately, have not gotten to treatment recommendations for treatment guidelines or management approaches. Much more needs to be published and studied about this in order for there to be a literature to refer to. We definitely understand the limitations of the data that is present and, as part of our website production, we will need to consider how to approach this, and we are discussing this at CDC, and we will be discussing it with the stakeholders, so I think one of the things to be, to keep in mind is that none, there's probably, there's no medication, there's no management approach or way of of handling illness that's going to help everyone, and one of the things that may be most helpful is if we divide our recommendations into degrees of severity, and I think where the problem comes is that when patients are very very severely ill, some of the things that may benefit people with less severe impairment either appears condescending or is actually harmful and so we're going to have to do a better job of explaining this.
Dr. Nahle
So I'll follow up on this Dr. Unger, how do you frame this in the context of the AHRQ(?) recommendations or or that opinion recently on finding these type of treatments inefficient.
Dr. Unger
Well they certainly are inefficient and they actually aren't treatments. Cognitive Behavioral Therapy, is what's called a management tool, that doesn't mean that, it's it's not a negative thing, it's just a way of helping people get a little bit more control over their illness. It doesn't change the illness, and so it's really inappropriate to call it a treatment and we did move it from our, we did move the way we describe it into a, under the idea of something that may help some people and I think that is the way to keep it in mind. It is nothing, is in all, its (not) gonna be for everyone.
Dr. Nahle
Absolutely, and I have to acknowledge that you have made some changes, but as the questioners ask the question, the institutions like the Mayo Clinic are citing the CDC for this type of information to educate physicians and that is an important element. Now let me move on to, Dr. Unger, to another question here that I have, in what you described as the complexity analysis of ME/CFS, you showed some overlap between other diseases, another fatigue etc as well as Post-Exertional Malaise, now when we talk about the fatigue in the context of ME/CFS can you make the distinction to
us about what we mean by that fatigue because it's very different, clearly, from the fatigue that we see in depression, for example, exercise helps in that context, however in in in the case of ME/CFS patient's you have Post-Exertional Malaise as if you exercise you crash, so when we try to I identify the similarities and the differences between ME/CFS and other diseases, how do we distinguish fatigue? Is there a qualifier that should be there?
Dr. Unger
Well I think, if I'm not sure, I'm going to see if I can go back to that, to that diagram, and one of the domains is Fatigue but another domain that was listed was Post Exertional Malaise because I do, all that it is, it is a different part of fatigue, and it actually is sort of the $65,000 question, is there a difference in fatigue between different kinds of illnesses, and what we can do is use the same instruments and measure the amount of fatigue that a patient is experiencing. I think one of the most important lessons that we have is that it's, fatigue might not be the best measure of this illness, and maybe not even Post Exertional Malaise, rather where they're at in their functioning, and that's because patients are so anxious to do more and more that they, when they are better they will exercise or work up to their level of fatigue, and that they've had that, they had before and so what changes is their function and not their fatigue and so that's one of the questions, and that's why you need to measure all of these things together, no one measure is going to be unique for ME/CFS.
Dr. Nahle
Yes, thank you, I'd like to move on to other questions, is ME/CFS tracked at all for prevalence in the U.S.?
Dr. Unger
There is not a systematic way to track it, we have added a question, an optional question, to some of the states that wanted to do it, basically just asking have you been diagnosed with ME/CFS by a physician, that is in the Behavioral Risk Factor Surveillance Survey and it would be just self-report.
Dr. Nahle
And is it the CDC in charge of tracking disease, demographics about diseases in the United States and perhaps in the world?
Dr. Unger
Well, yes I guess, I guess we are. If you're asking is ME/CFS a reportable condition? No it is not one of the reportable conditions and that has, people have asked about that, why isn't it a reportable condition and the process for making a condition reportable is a very very complex, and it requires agreements with states, and I don't think we're there yet with ME/CFS. It could be that we'll get there at some point but were just not there yet. And I really feel like the data that CDC and others have produced about the the burden of this illness is sufficient to justify more work, and getting more numbers on, you know, who's affected isn't gonna give us any more impetus than we already have.