[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:06.86,0:00:10.38,Default,,0000,0000,0000,,Good evening.
Dialogue: 0,0:00:10.38,0:00:13.41,Default,,0000,0000,0000,,thank you no doubt for
Dialogue: 0,0:00:13.41,0:00:17.12,Default,,0000,0000,0000,,Thank you Nora, for making possible this's evening's
Dialogue: 0,0:00:17.12,0:00:20.56,Default,,0000,0000,0000,,hopefully dialogue. Chronic fatigue syndrome
Dialogue: 0,0:00:20.56,0:00:23.66,Default,,0000,0000,0000,,is arguably one of the most
Dialogue: 0,0:00:23.66,0:00:27.52,Default,,0000,0000,0000,,controverted, misunderstood, misperceived
Dialogue: 0,0:00:27.52,0:00:32.12,Default,,0000,0000,0000,,fields in medicine today. Although
Dialogue: 0,0:00:32.12,0:00:36.55,Default,,0000,0000,0000,,it is clear that the health of millions of people
Dialogue: 0,0:00:36.55,0:00:40.70,Default,,0000,0000,0000,,has been compromised significantly by this disease,
Dialogue: 0,0:00:40.70,0:00:44.51,Default,,0000,0000,0000,,still, in medicine, we face situations
Dialogue: 0,0:00:44.51,0:00:49.19,Default,,0000,0000,0000,,where an extreme, even in our own medical community--
Dialogue: 0,0:00:49.19,0:00:52.19,Default,,0000,0000,0000,,the diseased is not believed, that it is real.
Dialogue: 0,0:00:52.19,0:00:56.18,Default,,0000,0000,0000,,Which is a shame. So the one thing, if there is one thing
Dialogue: 0,0:00:56.18,0:01:00.26,Default,,0000,0000,0000,,of anyone in this audience here today, that I would like to
Dialogue: 0,0:01:00.26,0:01:05.89,Default,,0000,0000,0000,,have us a point to take home, of your family members, your friends, or yourself,
Dialogue: 0,0:01:05.89,0:01:09.88,Default,,0000,0000,0000,,is to not kid yourself--this is a real disease.
Dialogue: 0,0:01:09.88,0:01:13.92,Default,,0000,0000,0000,,And what I would like to do tonight is share with you
Dialogue: 0,0:01:13.92,0:01:17.40,Default,,0000,0000,0000,,the evolving understanding
Dialogue: 0,0:01:17.40,0:01:22.12,Default,,0000,0000,0000,,that here at Stanford we have put together. What we tell you today
Dialogue: 0,0:01:22.12,0:01:26.10,Default,,0000,0000,0000,,may not be true tomorrow, but what we tell you today
Dialogue: 0,0:01:26.10,0:01:30.53,Default,,0000,0000,0000,,hopefully is better than what we had as a model or as an understanding
Dialogue: 0,0:01:30.53,0:01:34.20,Default,,0000,0000,0000,,yesterday. And it is evolving. It's changing.
Dialogue: 0,0:01:34.20,0:01:37.29,Default,,0000,0000,0000,,But we have a simple goal, is--one day,
Dialogue: 0,0:01:37.29,0:01:41.36,Default,,0000,0000,0000,,one day, have CFS,
Dialogue: 0,0:01:41.36,0:01:46.60,Default,,0000,0000,0000,,a history of the past, so we do one day be able
Dialogue: 0,0:01:46.60,0:01:51.62,Default,,0000,0000,0000,,to conquer the disease, and be able to bring relief finally to the many patients
Dialogue: 0,0:01:51.62,0:01:52.45,Default,,0000,0000,0000,,who are suffering.
Dialogue: 0,0:01:52.45,0:01:56.39,Default,,0000,0000,0000,,I do not have the time frame for this, but trust me,
Dialogue: 0,0:01:56.39,0:01:59.60,Default,,0000,0000,0000,,we are working hard in making that time frame
Dialogue: 0,0:01:59.60,0:02:03.12,Default,,0000,0000,0000,,the shortest possible. Allow me to start the
Dialogue: 0,0:02:03.12,0:02:06.55,Default,,0000,0000,0000,,presentation with a real case. This is a patient--
Dialogue: 0,0:02:06.55,0:02:11.54,Default,,0000,0000,0000,,I don't know if she's in the audience or not--but it's a 53-year-old woman
Dialogue: 0,0:02:11.54,0:02:14.71,Default,,0000,0000,0000,,who came to see us in 2008
Dialogue: 0,0:02:14.71,0:02:18.15,Default,,0000,0000,0000,,because she had had disabling fatigue
Dialogue: 0,0:22:44.99,0:22:48.40,Default,,0000,0000,0000,,of treatment. And what they found, if they gave
Dialogue: 0,0:22:48.40,0:22:52.22,Default,,0000,0000,0000,,the drug or placebo--so they would randomize to drug
Dialogue: 0,0:22:52.22,0:22:56.10,Default,,0000,0000,0000,,for month-and-a-half, or placebo for month-and-a-half,
Dialogue: 0,0:22:56.10,0:22:59.21,Default,,0000,0000,0000,,what they found is that there was no difference. But just
Dialogue: 0,0:22:59.21,0:23:03.10,Default,,0000,0000,0000,,put that in the in the back of your brain. The fact
Dialogue: 0,0:23:03.10,0:23:06.23,Default,,0000,0000,0000,,that that patient, those patients, got a month-and-a-half
Dialogue: 0,0:23:06.23,0:23:09.67,Default,,0000,0000,0000,,of antiviral treatment, or acyclovir.
Dialogue: 0,0:23:09.67,0:23:13.34,Default,,0000,0000,0000,,So the one thing that we changed at Stanford about
Dialogue: 0,0:23:13.34,0:23:17.10,Default,,0000,0000,0000,,seven years ago, was that we
Dialogue: 0,0:23:17.10,0:23:20.45,Default,,0000,0000,0000,,brought a new model. And we
Dialogue: 0,0:23:20.45,0:23:24.68,Default,,0000,0000,0000,,thought if the patients have been here for a long period of time,
Dialogue: 0,0:23:24.68,0:23:29.00,Default,,0000,0000,0000,,and if it's possible that an infectious agent is behind the symptoms
Dialogue: 0,0:23:29.00,0:23:32.12,Default,,0000,0000,0000,,at a chronic level, will it be possible that
Dialogue: 0,0:23:32.12,0:23:36.35,Default,,0000,0000,0000,,if we intervene with the appropriate agent--and finding that appropriate agent
Dialogue: 0,0:23:36.35,0:23:37.31,Default,,0000,0000,0000,,may be a really
Dialogue: 0,0:23:37.31,0:23:41.71,Default,,0000,0000,0000,,daunting task--is it possible that then long-term,
Dialogue: 0,0:23:41.71,0:23:46.41,Default,,0000,0000,0000,,with appropriate anti-microbial interventions, can improve the symptoms
Dialogue: 0,0:23:46.41,0:23:50.33,Default,,0000,0000,0000,,in subsets of patients, not to repeat the mistakes of the past,
Dialogue: 0,0:23:50.33,0:23:54.35,Default,,0000,0000,0000,,of treating all the patients as the same homogeneous group.
Dialogue: 0,0:23:54.35,0:23:57.66,Default,,0000,0000,0000,,And to our surprise, when we took patients and--
Dialogue: 0,0:23:57.66,0:24:00.89,Default,,0000,0000,0000,,it's beyond the scope of tonight's conversation on how we
Dialogue: 0,0:24:00.89,0:24:06.26,Default,,0000,0000,0000,,ran into this surgroup--we found that if patients had high levels
Dialogue: 0,0:24:06.26,0:24:10.72,Default,,0000,0000,0000,,of antibodies against Epstein-Barr virus, the same virus that has been
Dialogue: 0,0:24:10.72,0:24:14.87,Default,,0000,0000,0000,,clearly tied to the onset of CFS, and another virus
Dialogue: 0,0:24:14.87,0:24:18.60,Default,,0000,0000,0000,,called Human Herpesvirus-6, if they have high levels against
Dialogue: 0,0:24:18.60,0:24:21.83,Default,,0000,0000,0000,,those two viruses, it looks like when we gave them
Dialogue: 0,0:24:21.83,0:24:25.21,Default,,0000,0000,0000,,another drug called Valganciclovir
Dialogue: 0,0:24:25.21,0:24:28.41,Default,,0000,0000,0000,,for six months in this abscissa. You have
Dialogue: 0,0:24:28.41,0:24:33.32,Default,,0000,0000,0000,,a year's, so goes all the way to six months, half a year here,
Dialogue: 0,0:24:33.32,0:24:37.83,Default,,0000,0000,0000,,and in the same abscissa, but for when the patients were starting before therapy,
Dialogue: 0,0:24:37.83,0:24:41.60,Default,,0000,0000,0000,,you have all the way up to twenty years. So the patient may have been sick for
Dialogue: 0,0:24:41.60,0:24:42.38,Default,,0000,0000,0000,,eighteen years,
Dialogue: 0,0:24:42.38,0:24:46.46,Default,,0000,0000,0000,,one year, five years--no matter how long they were sick
Dialogue: 0,0:24:46.46,0:24:49.58,Default,,0000,0000,0000,,when we gave this drug for six months,
Dialogue: 0,0:24:49.58,0:24:54.49,Default,,0000,0000,0000,,total surprise to us. They had this remarkable
Dialogue: 0,0:24:54.49,0:24:58.53,Default,,0000,0000,0000,,improvement in their physical and cognitive
Dialogue: 0,0:24:58.53,0:25:03.90,Default,,0000,0000,0000,,function. And to our surprise as well,
Dialogue: 0,0:25:03.90,0:25:06.28,Default,,0000,0000,0000,,the initial reaction to
Dialogue: 0,0:25:06.28,0:25:13.21,Default,,0000,0000,0000,,them was, they got worse. And then they improved.
Dialogue: 0,0:25:13.21,0:25:17.32,Default,,0000,0000,0000,,The worsening was a complete surprise to us. And we made a mistake initially
Dialogue: 0,0:25:17.32,0:25:21.88,Default,,0000,0000,0000,,because we let people believe that for patients to get
Dialogue: 0,0:25:21.88,0:25:25.53,Default,,0000,0000,0000,,better with this intervention who had these markers in the blood,
Dialogue: 0,0:25:25.53,0:25:29.80,Default,,0000,0000,0000,,they had to get worse. And that later on
Dialogue: 0,0:25:29.80,0:25:32.60,Default,,0000,0000,0000,,turns out to be not correct. There are patients who can get better
Dialogue: 0,0:25:32.60,0:25:36.34,Default,,0000,0000,0000,,without significant worsening, but still we see patients who get worse
Dialogue: 0,0:25:36.34,0:25:40.49,Default,,0000,0000,0000,,with the initial treatment. Now, we cannot
Dialogue: 0,0:25:40.49,0:25:45.20,Default,,0000,0000,0000,,be certain that this would have not been done because we perhaps
Dialogue: 0,0:25:45.20,0:25:46.53,Default,,0000,0000,0000,,validated the patients; we
Dialogue: 0,0:25:46.53,0:25:50.58,Default,,0000,0000,0000,,listened to them, so that we were doing a placebo effect.
Dialogue: 0,0:25:50.58,0:25:54.37,Default,,0000,0000,0000,,It's hard to argue that this is placebo when somebody has been sick for
Dialogue: 0,0:25:54.37,0:25:55.45,Default,,0000,0000,0000,,twenty years,
Dialogue: 0,0:25:55.45,0:25:59.90,Default,,0000,0000,0000,,or eighty years, they get an intervention for six months, and they suddenly get better.
Dialogue: 0,0:25:59.90,0:26:03.29,Default,,0000,0000,0000,,But granted, we have to go to what is called a
Dialogue: 0,0:26:03.29,0:26:06.45,Default,,0000,0000,0000,,randomized, placebo-controlled double-blind
Dialogue: 0,0:26:06.45,0:26:10.46,Default,,0000,0000,0000,,pilot study, to see if we could give the drug
Dialogue: 0,0:26:10.46,0:26:14.28,Default,,0000,0000,0000,,to patients when they didn't know they were getting the drug,
Dialogue: 0,0:26:14.28,0:26:17.33,Default,,0000,0000,0000,,or the sugar pill, and we the physicians
Dialogue: 0,0:26:17.33,0:26:20.49,Default,,0000,0000,0000,,will not know the same thing. So: double-blind.
Dialogue: 0,0:26:20.49,0:26:25.00,Default,,0000,0000,0000,,And we were fortunate to have the sponsorship.
Dialogue: 0,0:26:25.00,0:26:28.84,Default,,0000,0000,0000,,The answer for many of the questions we face
Dialogue: 0,0:26:28.84,0:26:32.54,Default,,0000,0000,0000,,with chronic fatigue syndrome is doing clinical trials, but those are
Dialogue: 0,0:26:32.54,0:26:35.89,Default,,0000,0000,0000,,very expensive things to do, enterprises to do,
Dialogue: 0,0:26:35.89,0:26:39.78,Default,,0000,0000,0000,,and we were lucky that we had the sponsorship from the manufacturer
Dialogue: 0,0:26:39.78,0:26:42.92,Default,,0000,0000,0000,,of the drug in this case. Like any
Dialogue: 0,0:26:42.92,0:26:46.98,Default,,0000,0000,0000,,intervention, we do need a team.
Dialogue: 0,0:26:46.98,0:26:50.75,Default,,0000,0000,0000,,Nothing can happen these days in research without having
Dialogue: 0,0:26:50.75,0:26:54.21,Default,,0000,0000,0000,,an outstanding team. And what we did is
Dialogue: 0,0:26:54.21,0:26:58.44,Default,,0000,0000,0000,,randomized the patients to two areas: to either placebo,
Dialogue: 0,0:26:58.44,0:27:02.27,Default,,0000,0000,0000,,sugar pill, or valacyclovir for six months,
Dialogue: 0,0:27:02.27,0:27:06.20,Default,,0000,0000,0000,,and then for three months we stayed blind still.
Dialogue: 0,0:27:06.20,0:27:10.22,Default,,0000,0000,0000,,At nine months, we took the data, put it in
Dialogue: 0,0:27:10.22,0:27:13.61,Default,,0000,0000,0000,,three CVs, shipped it to three different,
Dialogue: 0,0:27:13.61,0:27:17.21,Default,,0000,0000,0000,,three different places, so that nobody could touch the data
Dialogue: 0,0:27:17.21,0:27:20.21,Default,,0000,0000,0000,,after the blind code was broken,
Dialogue: 0,0:27:20.21,0:27:23.53,Default,,0000,0000,0000,,and then we broke the code and see how the patients did
Dialogue: 0,0:27:23.53,0:27:27.39,Default,,0000,0000,0000,,on the drug versus the sugar pill.
Dialogue: 0,0:27:27.39,0:27:31.26,Default,,0000,0000,0000,,This is a graph that shows what happened
Dialogue: 0,0:27:31.26,0:27:34.71,Default,,0000,0000,0000,,to the patients who are either on the
Dialogue: 0,0:27:34.71,0:27:39.29,Default,,0000,0000,0000,,placebo in red, or who are on the treatment
Dialogue: 0,0:27:39.29,0:27:42.46,Default,,0000,0000,0000,,in green. And in this scale,
Dialogue: 0,0:27:42.46,0:27:46.23,Default,,0000,0000,0000,,going down means you are getting better.
Dialogue: 0,0:27:46.23,0:27:49.27,Default,,0000,0000,0000,,So the patient who went on the treatment went down,
Dialogue: 0,0:27:49.27,0:27:52.36,Default,,0000,0000,0000,,meaning they got better, and that
Dialogue: 0,0:27:52.36,0:27:55.46,Default,,0000,0000,0000,,trend of going down was
Dialogue: 0,0:27:55.46,0:27:59.11,Default,,0000,0000,0000,,according to this statistical model, it's statistically significantly
Dialogue: 0,0:27:59.11,0:28:02.99,Default,,0000,0000,0000,,different than those in the placebo, suggesting here
Dialogue: 0,0:28:02.99,0:28:07.19,Default,,0000,0000,0000,,that the benefit that we have shown before, when we were giving this drug to
Dialogue: 0,0:28:07.19,0:28:08.15,Default,,0000,0000,0000,,patients,
Dialogue: 0,0:28:08.15,0:28:12.12,Default,,0000,0000,0000,,is mediated by something that the drug is doing, and not something that they
Dialogue: 0,0:28:12.12,0:28:12.87,Default,,0000,0000,0000,,are doing
Dialogue: 0,0:28:12.87,0:28:18.80,Default,,0000,0000,0000,,themselves through placebo. We also assessed
Dialogue: 0,0:28:18.80,0:28:22.19,Default,,0000,0000,0000,,their cognitive function, meaning we asked the patients
Dialogue: 0,0:28:22.19,0:28:26.29,Default,,0000,0000,0000,,how they felt in terms of their cognitive performance.
Dialogue: 0,0:28:26.29,0:28:29.72,Default,,0000,0000,0000,,And they say, I feel 100 percent, which no one will tell us
Dialogue: 0,0:28:29.72,0:28:33.43,Default,,0000,0000,0000,,when they were sick, or they will say 10 percent or 50 percent and so forth.
Dialogue: 0,0:28:33.43,0:28:37.82,Default,,0000,0000,0000,,That is very hard to correlate, because it also depends on how
Dialogue: 0,0:28:37.82,0:28:41.41,Default,,0000,0000,0000,,good their sleep (is) or what other medications they are taking.
Dialogue: 0,0:28:41.41,0:28:44.63,Default,,0000,0000,0000,,et cetera. So when we looked at
Dialogue: 0,0:28:44.63,0:28:47.91,Default,,0000,0000,0000,,what happened with their cognitive function--self-reported,
Dialogue: 0,0:28:47.91,0:28:51.11,Default,,0000,0000,0000,,but remember, under double-blind conditions, not knowing if they were
Dialogue: 0,0:28:51.11,0:28:52.60,Default,,0000,0000,0000,,getting treatment or placebo--
Dialogue: 0,0:28:52.60,0:28:56.78,Default,,0000,0000,0000,,the trajectory also for those who went into treatment
Dialogue: 0,0:28:56.78,0:29:00.51,Default,,0000,0000,0000,,was better that those who were in the placebo.
Dialogue: 0,0:29:00.51,0:29:03.67,Default,,0000,0000,0000,,Now is one of those things--
Dialogue: 0,0:29:03.67,0:29:09.12,Default,,0000,0000,0000,,the research--never stops either surprising you or fascinating you.
Dialogue: 0,0:29:09.12,0:29:13.61,Default,,0000,0000,0000,,The randomization for this study, meaning we allocated the patients
Dialogue: 0,0:29:13.61,0:29:17.73,Default,,0000,0000,0000,,to either group by pure chance--
Dialogue: 0,0:29:17.73,0:29:20.76,Default,,0000,0000,0000,,the allocation of the patients to the two groups
Dialogue: 0,0:29:20.76,0:29:25.16,Default,,0000,0000,0000,,was done by somebody in Geneva, in Europe. So we will see a patient
Dialogue: 0,0:29:25.16,0:29:28.42,Default,,0000,0000,0000,,and we'll say, "That patient is a candidate for the study."
Dialogue: 0,0:29:28.42,0:29:32.71,Default,,0000,0000,0000,,We didn't allocate them to one group or the other. We will call Geneva, to a
Dialogue: 0,0:29:32.71,0:29:33.68,Default,,0000,0000,0000,,group there,
Dialogue: 0,0:29:33.68,0:29:36.93,Default,,0000,0000,0000,,and they would give us the answer the next day, or whatever time difference it was,
Dialogue: 0,0:29:37.30,0:29:41.22,Default,,0000,0000,0000,,and they would tell us, "This is the group the patient should go, group X."
Dialogue: 0,0:29:41.22,0:29:44.30,Default,,0000,0000,0000,,And they would call pharmacy and they would give us the appeals for that
Dialogue: 0,0:29:44.30,0:29:48.36,Default,,0000,0000,0000,,patient and so forth. Yet, despite that it was
Dialogue: 0,0:29:48.36,0:29:52.29,Default,,0000,0000,0000,,totally by chance and by pure randomization,
Dialogue: 0,0:29:52.29,0:29:55.28,Default,,0000,0000,0000,,if you'll notice, here, the baseline
Dialogue: 0,0:29:55.28,0:30:00.59,Default,,0000,0000,0000,,levels of cognitive function for the treatment group is slightly lower
Dialogue: 0,0:30:00.59,0:30:04.37,Default,,0000,0000,0000,,than the placebo. We were fortunate that that this was not statistically
Dialogue: 0,0:30:04.37,0:30:09.49,Default,,0000,0000,0000,,significant, but the patients in the treatment group started with a slight
Dialogue: 0,0:30:09.49,0:30:10.80,Default,,0000,0000,0000,,disadvantage
Dialogue: 0,0:30:10.80,0:30:14.34,Default,,0000,0000,0000,,over the placebo. And the same thing actually was for the fatigue.
Dialogue: 0,0:30:14.34,0:30:19.80,Default,,0000,0000,0000,,Remember that in this scale, I mentioned to you that the higher the worse,
Dialogue: 0,0:30:19.80,0:30:22.20,Default,,0000,0000,0000,,and again, the patients,
Dialogue: 0,0:30:22.20,0:30:25.56,Default,,0000,0000,0000,,well in this case, you know, the lower is the better, so the treatment is
Dialogue: 0,0:30:25.56,0:30:27.93,Default,,0000,0000,0000,,started at the right place.
Dialogue: 0,0:30:27.93,0:30:32.28,Default,,0000,0000,0000,,And then the other aspect that we did was to see how the cognitive did by
Dialogue: 0,0:30:32.28,0:30:35.66,Default,,0000,0000,0000,,a questioner. So the previous light was how they did
Dialogue: 0,0:30:35.66,0:30:39.29,Default,,0000,0000,0000,,with self-reported cognitive function; this is how they do
Dialogue: 0,0:30:39.29,0:30:42.50,Default,,0000,0000,0000,,with a questioner that assesses their mental capacity,
Dialogue: 0,0:30:42.50,0:30:46.29,Default,,0000,0000,0000,,and in this case, going down again is improving
Dialogue: 0,0:30:46.29,0:30:50.21,Default,,0000,0000,0000,,and again the treatment group is slightly worse
Dialogue: 0,0:30:50.21,0:30:53.42,Default,,0000,0000,0000,,than the starting place for the placebo,
Dialogue: 0,0:30:53.42,0:30:56.57,Default,,0000,0000,0000,,yet the trajectory of the treatment group
Dialogue: 0,0:30:56.57,0:31:00.28,Default,,0000,0000,0000,,is statistically significantly better--going down it's better--
Dialogue: 0,0:31:00.28,0:31:03.44,Default,,0000,0000,0000,,than the placebo group. So in this study we
Dialogue: 0,0:31:03.44,0:31:06.63,Default,,0000,0000,0000,,offer perhaps what are the first
Dialogue: 0,0:31:06.63,0:31:11.29,Default,,0000,0000,0000,,evidences that if you intervene with an appropriate drug,
Dialogue: 0,0:31:11.29,0:31:14.11,Default,,0000,0000,0000,,with a specific biomarker in black like titers
Dialogue: 0,0:31:14.11,0:31:18.30,Default,,0000,0000,0000,,elevated against those two viruses, it appears that we can make
Dialogue: 0,0:31:18.30,0:31:21.56,Default,,0000,0000,0000,,a significant difference in these patients' physical
Dialogue: 0,0:31:21.56,0:31:26.59,Default,,0000,0000,0000,,and cognitive status, independent of placebo.
Dialogue: 0,0:31:26.59,0:31:29.81,Default,,0000,0000,0000,,We were not just happy with
Dialogue: 0,0:31:29.81,0:31:34.57,Default,,0000,0000,0000,,just seeing this and not being able to explain it. We wanted to go beyond that.
Dialogue: 0,0:31:34.57,0:31:37.97,Default,,0000,0000,0000,,And we have noticed that in patients who received the drug,
Dialogue: 0,0:31:37.97,0:31:42.71,Default,,0000,0000,0000,,these cells, called neutrophils, increase in a statistical manner,
Dialogue: 0,0:31:42.71,0:31:46.70,Default,,0000,0000,0000,,that is not seen in the patients who get placebo.
Dialogue: 0,0:31:46.70,0:31:50.21,Default,,0000,0000,0000,,So something is associated with neutrophils that
Dialogue: 0,0:31:50.21,0:31:55.30,Default,,0000,0000,0000,,maybe, maybe, (is) one potential explanation of why they get better.
Dialogue: 0,0:31:55.30,0:31:58.71,Default,,0000,0000,0000,,The other cells that change
Dialogue: 0,0:31:58.71,0:32:03.20,Default,,0000,0000,0000,,are the monocytes, in this case they go down in the patients who get the drug,
Dialogue: 0,0:32:03.20,0:32:07.50,Default,,0000,0000,0000,,and not in those who get the placebo. At at the same time,
Dialogue: 0,0:32:07.50,0:32:10.67,Default,,0000,0000,0000,,we took the serum of these patients, and through a
Dialogue: 0,0:32:10.67,0:32:14.72,Default,,0000,0000,0000,,technology that is available here at Stanford, and in collaboration
Dialogue: 0,0:32:14.72,0:32:18.91,Default,,0000,0000,0000,,with our colleagues in the immunology department, we were able to measure
Dialogue: 0,0:32:18.91,0:32:22.53,Default,,0000,0000,0000,,through this technique that is called Luminex technology, where you can
Dialogue: 0,0:32:22.53,0:32:27.43,Default,,0000,0000,0000,,measure a hundred cytokines, a hundred analytes, in a single well
Dialogue: 0,0:32:27.43,0:32:31.55,Default,,0000,0000,0000,,of a single patient at the same time, we were able to measure what we call
Dialogue: 0,0:32:31.55,0:32:33.82,Default,,0000,0000,0000,,cytokines. Cytokines are molecules
Dialogue: 0,0:32:33.82,0:32:37.29,Default,,0000,0000,0000,,that the immune system uses to talk from one cell
Dialogue: 0,0:32:37.29,0:32:41.11,Default,,0000,0000,0000,,to the other. And through this technology we were able to show
Dialogue: 0,0:32:41.11,0:32:45.77,Default,,0000,0000,0000,,that in those patients at baseline that I show you that they were slightly worse
Dialogue: 0,0:32:45.77,0:32:50.50,Default,,0000,0000,0000,,for the treatment group, we show that the certain cytokines were higher
Dialogue: 0,0:32:50.50,0:32:53.83,Default,,0000,0000,0000,,in those who were worse, than in those who were better--initially,
Dialogue: 0,0:32:53.83,0:32:57.72,Default,,0000,0000,0000,,like IL5 and IL17. And more importantly,
Dialogue: 0,0:32:57.72,0:33:01.17,Default,,0000,0000,0000,,over time, the patients on the treatment,
Dialogue: 0,0:33:01.17,0:33:04.21,Default,,0000,0000,0000,,on the Valganciclovir, on the drug, have
Dialogue: 0,0:33:04.21,0:33:07.50,Default,,0000,0000,0000,,elevation in cytokines that were not seen
Dialogue: 0,0:33:07.50,0:33:10.98,Default,,0000,0000,0000,,as much in the patient in the placebo. Cytokines like
Dialogue: 0,0:33:10.98,0:33:16.10,Default,,0000,0000,0000,,IL5, IL17, cytokines that attract neutrophils--the same cell
Dialogue: 0,0:33:16.10,0:33:20.69,Default,,0000,0000,0000,,that I mentioned to you that is elevated. Or cytokines that had to do
Dialogue: 0,0:33:20.69,0:33:24.33,Default,,0000,0000,0000,,with monocyte communication, the same cell that I mentioned to you
Dialogue: 0,0:33:24.33,0:33:27.54,Default,,0000,0000,0000,,that it goes down. And the drug was safe
Dialogue: 0,0:33:27.54,0:33:31.68,Default,,0000,0000,0000,,during the period of administration. And we concluded then
Dialogue: 0,0:33:31.68,0:33:35.22,Default,,0000,0000,0000,,that if the patients have high levels of these antibodies against
Dialogue: 0,0:33:35.22,0:33:38.28,Default,,0000,0000,0000,,HHV-6 and DBV, giving them
Dialogue: 0,0:33:38.28,0:33:41.74,Default,,0000,0000,0000,,Valganciclovir for six months
Dialogue: 0,0:33:41.74,0:33:45.24,Default,,0000,0000,0000,,appears to correlate with an improvement in cognitive and physical
Dialogue: 0,0:33:45.24,0:33:48.62,Default,,0000,0000,0000,,that is independent from placebo and we have
Dialogue: 0,0:33:48.62,0:33:52.51,Default,,0000,0000,0000,,a mechanism, proposed a mechanism
Dialogue: 0,0:33:52.51,0:33:57.44,Default,,0000,0000,0000,,through immunomodulation, meaning that sometime the drugs work;
Dialogue: 0,0:33:57.44,0:34:00.94,Default,,0000,0000,0000,,not necessarily through the fact that they are killing the organism,
Dialogue: 0,0:34:00.94,0:34:05.59,Default,,0000,0000,0000,,but by the fact that they are making the immune system (go) one direction
Dialogue: 0,0:34:05.59,0:34:08.92,Default,,0000,0000,0000,,that is beneficial to the patient. So...
Dialogue: 0,0:34:08.92,0:34:11.96,Default,,0000,0000,0000,,But I want to emphasize two things.
Dialogue: 0,0:34:11.96,0:34:16.70,Default,,0000,0000,0000,,Not all the patients have those blood markers. So not everybody will be
Dialogue: 0,0:34:16.70,0:34:20.11,Default,,0000,0000,0000,,in theory a candidate for that intervention. And unfortunately, not
Dialogue: 0,0:34:20.11,0:34:24.85,Default,,0000,0000,0000,,all the patients with the markers necessarily improve.
Dialogue: 0,0:34:24.85,0:34:27.97,Default,,0000,0000,0000,,so that let us, or has led us,
Dialogue: 0,0:34:27.97,0:34:31.29,Default,,0000,0000,0000,,at Stanford to identify what we call
Dialogue: 0,0:34:31.30,0:34:35.44,Default,,0000,0000,0000,,sub-groups of patients with CFS, those who
Dialogue: 0,0:34:35.44,0:34:38.83,Default,,0000,0000,0000,,meet that profile of the HSV-6, EBV,
Dialogue: 0,0:34:38.83,0:34:43.21,Default,,0000,0000,0000,,we have found other patients that have what we call the herpes simplex one
Dialogue: 0,0:34:43.21,0:34:46.35,Default,,0000,0000,0000,,or two sub-group. Patients who
Dialogue: 0,0:34:46.35,0:34:49.80,Default,,0000,0000,0000,,absolutely tell you that their CFS worsened
Dialogue: 0,0:34:49.80,0:34:53.15,Default,,0000,0000,0000,,when their oral herpes, the famous
Dialogue: 0,0:34:53.15,0:34:57.25,Default,,0000,0000,0000,,fever blisters, the oral blisters, or genital herpes,
Dialogue: 0,0:34:57.25,0:35:00.33,Default,,0000,0000,0000,,that when those exacerbate,
Dialogue: 0,0:35:00.33,0:35:03.97,Default,,0000,0000,0000,,and manifest in the way of painful lesions, those patients
Dialogue: 0,0:35:03.97,0:35:07.78,Default,,0000,0000,0000,,actually, their symptoms get much more worse,
Dialogue: 0,0:35:07.79,0:35:11.00,Default,,0000,0000,0000,,or that their disease began when they have the outbreak, the first outbreak
Dialogue: 0,0:35:11.00,0:35:14.10,Default,,0000,0000,0000,,with one of those two viruses. So that's what we have called a
Dialogue: 0,0:35:14.10,0:35:17.35,Default,,0000,0000,0000,,herpes simplex sub-group. We have had some Brucella
Dialogue: 0,0:35:17.35,0:35:20.94,Default,,0000,0000,0000,,patients, others with Q fever, like the ones that they
Dialogue: 0,0:35:20.94,0:35:24.89,Default,,0000,0000,0000,,found in Australia, mycoplasma, chlamydia,
Dialogue: 0,0:35:24.89,0:35:27.57,Default,,0000,0000,0000,,and we have found patients who have low titers
Dialogue: 0,0:35:27.57,0:35:30.82,Default,,0000,0000,0000,,against HSV-6, but have very high levels
Dialogue: 0,0:35:30.82,0:35:34.13,Default,,0000,0000,0000,,of this HSV-6 virus that
Dialogue: 0,0:35:34.13,0:35:38.62,Default,,0000,0000,0000,,have also clearly been associated with significant fatigue in these patients,
Dialogue: 0,0:35:38.62,0:35:41.86,Default,,0000,0000,0000,,and those patients are the ones that we call chromosomally
Dialogue: 0,0:35:41.86,0:35:45.42,Default,,0000,0000,0000,,integrated human herpes virus six. So this is another
Dialogue: 0,0:35:45.42,0:35:49.91,Default,,0000,0000,0000,,completely different sub-group. And it's a tougher group
Dialogue: 0,0:35:49.91,0:35:54.49,Default,,0000,0000,0000,,to treat. I'm sure you remember the first patient that I
Dialogue: 0,0:35:54.50,0:35:58.53,Default,,0000,0000,0000,,told you. The 50 year-old woman who came in 2008
Dialogue: 0,0:35:58.53,0:36:02.76,Default,,0000,0000,0000,,to see us, with the hope that we could find something,
Dialogue: 0,0:36:02.76,0:36:06.71,Default,,0000,0000,0000,,and we did all these titers, and they were low, or negative,
Dialogue: 0,0:36:06.71,0:36:10.90,Default,,0000,0000,0000,,but she's one of the patients who was found to have very high levels
Dialogue: 0,0:36:10.90,0:36:14.80,Default,,0000,0000,0000,,of the human herpes virus 6 in her blood. She one of the patients
Dialogue: 0,0:36:14.80,0:36:18.51,Default,,0000,0000,0000,,that we call, that the virus has found at clever way
Dialogue: 0,0:36:18.51,0:36:22.52,Default,,0000,0000,0000,,to get into the actual genome, into the genetic material
Dialogue: 0,0:36:22.52,0:36:26.90,Default,,0000,0000,0000,,of her own cells, in a clever way to hide,
Dialogue: 0,0:36:26.10,0:36:30.64,Default,,0000,0000,0000,,and to perhaps to produce the damage. So the patient that I mentioned to you
Dialogue: 0,0:36:30.64,0:36:35.52,Default,,0000,0000,0000,,in 2008, we were studying her--and this is a way to measure
Dialogue: 0,0:36:35.52,0:36:39.20,Default,,0000,0000,0000,,her fatigue and her cognitive abilities.
Dialogue: 0,0:36:39.20,0:36:42.30,Default,,0000,0000,0000,,Being 100 is being in complete misery.
Dialogue: 0,0:36:42.30,0:36:46.74,Default,,0000,0000,0000,,It's really being sick. The CDC has done studies with this questionnaire
Dialogue: 0,0:36:46.74,0:36:50.60,Default,,0000,0000,0000,,for physical and cognitive dysfunction. Most of the CFS patients
Dialogue: 0,0:36:50.60,0:36:53.92,Default,,0000,0000,0000,,are around 60. Being completely well
Dialogue: 0,0:36:53.92,0:36:57.76,Default,,0000,0000,0000,,is around 10. So if you are (a) 60, you are really sick.
Dialogue: 0,0:36:57.76,0:37:00.94,Default,,0000,0000,0000,,She was around (an) 80. This is the same woman,
Dialogue: 0,0:37:00.94,0:37:05.61,Default,,0000,0000,0000,,patient, wife, mother, that I talked to you at the beginning.
Dialogue: 0,0:37:05.61,0:37:09.89,Default,,0000,0000,0000,,We started with the antiviral, and you can see how
Dialogue: 0,0:37:09.89,0:37:13.15,Default,,0000,0000,0000,,by different antivirual interventions of certain kinds,
Dialogue: 0,0:37:13.15,0:37:16.60,Default,,0000,0000,0000,,finally she has some relief here. Where
Dialogue: 0,0:37:16.60,0:37:19.67,Default,,0000,0000,0000,,her level of function going from 80
Dialogue: 0,0:37:19.67,0:37:24.21,Default,,0000,0000,0000,,to almost 25 is significantly improved.
Dialogue: 0,0:37:24.21,0:37:27.29,Default,,0000,0000,0000,,She went from not been able to run errands,
Dialogue: 0,0:37:27.29,0:37:31.99,Default,,0000,0000,0000,,to now go out, and travel, and enjoy the graduation of her
Dialogue: 0,0:37:31.99,0:37:35.96,Default,,0000,0000,0000,,daughter, et cetera, et cetera. However, those drugs,
Dialogue: 0,0:37:35.96,0:37:39.00,Default,,0000,0000,0000,,for us to be able to achieve this resolution
Dialogue: 0,0:37:39.00,0:37:42.64,Default,,0000,0000,0000,,we had to give them at very high doses, and you can only go
Dialogue: 0,0:37:42.64,0:37:46.86,Default,,0000,0000,0000,,with this drug so long. So we have to move her to other medications that are not
Dialogue: 0,0:37:46.86,0:37:47.64,Default,,0000,0000,0000,,so effective.
Dialogue: 0,0:37:47.64,0:37:51.25,Default,,0000,0000,0000,,And unfortunately she has relapsed recently.
Dialogue: 0,0:37:51.25,0:37:55.74,Default,,0000,0000,0000,,For her, we're going to try hopefully a clever way
Dialogue: 0,0:37:55.74,0:37:59.31,Default,,0000,0000,0000,,to measure what is in her blood that changes that makes her feel
Dialogue: 0,0:37:59.31,0:38:02.66,Default,,0000,0000,0000,,so much better, going from 80 which is
Dialogue: 0,0:38:02.66,0:38:06.24,Default,,0000,0000,0000,,near hell, to around 20 which is near
Dialogue: 0,0:38:06.24,0:38:09.49,Default,,0000,0000,0000,,health. So hopefully we'll be able to
Dialogue: 0,0:38:09.49,0:38:13.65,Default,,0000,0000,0000,,achieve that, but I just want to show you this as an example
Dialogue: 0,0:38:13.65,0:38:17.34,Default,,0000,0000,0000,,that there is something there that we can improve.
Dialogue: 0,0:38:17.34,0:38:20.94,Default,,0000,0000,0000,,All we have to do is devote resources and more people
Dialogue: 0,0:38:20.94,0:38:24.43,Default,,0000,0000,0000,,to be able to unveil this mystery.
Dialogue: 0,0:38:24.43,0:38:27.76,Default,,0000,0000,0000,,So that has been, so far, our experience.
Dialogue: 0,0:38:27.76,0:38:31.76,Default,,0000,0000,0000,,I would like to mention two things quickly because I'm sure you have
Dialogue: 0,0:38:31.76,0:38:33.50,Default,,0000,0000,0000,,questions about it.
Dialogue: 0,0:38:33.50,0:38:36.81,Default,,0000,0000,0000,,It is what recently has been reported as the famous
Dialogue: 0,0:38:36.81,0:38:40.56,Default,,0000,0000,0000,,XMRV virus. The XMRV virus
Dialogue: 0,0:38:40.56,0:38:44.77,Default,,0000,0000,0000,,was--that, and the Lancet study about degraded
Dialogue: 0,0:38:44.77,0:38:47.89,Default,,0000,0000,0000,,exercise. So I'm going to comment on those two things, because they are very
Dialogue: 0,0:38:47.89,0:38:52.42,Default,,0000,0000,0000,,timely. So the XMRV is a virus that was found
Dialogue: 0,0:38:52.42,0:38:56.48,Default,,0000,0000,0000,,in prostatic tumors, and it was thought that it could be associated with
Dialogue: 0,0:38:56.48,0:39:00.75,Default,,0000,0000,0000,,prostatic cancer. But then the surprise came in 2009
Dialogue: 0,0:39:00.75,0:39:04.55,Default,,0000,0000,0000,,when it was reported by a group from Nevada that patients with
Dialogue: 0,0:39:04.55,0:39:10.49,Default,,0000,0000,0000,,the disease had 70 percent--it's 67 percent, but you can't remember a 70 percent--
Dialogue: 0,0:39:10.49,0:39:14.72,Default,,0000,0000,0000,,the CFS patient had the virus. Well yes, only four percent
Dialogue: 0,0:39:14.72,0:39:18.31,Default,,0000,0000,0000,,of healthy controls had it. So that caused a major splash
Dialogue: 0,0:39:18.31,0:39:21.57,Default,,0000,0000,0000,,and hope of the possibility that this agent
Dialogue: 0,0:39:21.57,0:39:25.47,Default,,0000,0000,0000,,could be behind, also, in addition to the other ones that I showed you,
Dialogue: 0,0:39:25.47,0:39:29.63,Default,,0000,0000,0000,,and in addition to the ones that we are going after at Stanford.
Dialogue: 0,0:39:29.63,0:39:33.70,Default,,0000,0000,0000,,The problem has been, that following that study,
Dialogue: 0,0:39:33.70,0:39:37.11,Default,,0000,0000,0000,,there have been two others supporting those findings
Dialogue: 0,0:39:37.11,0:39:41.60,Default,,0000,0000,0000,,and about six others that show that the association
Dialogue: 0,0:39:41.60,0:39:47.36,Default,,0000,0000,0000,,is not there. So there is one, this is one study from the U.S., the 70 percent
Dialogue: 0,0:39:47.36,0:39:50.73,Default,,0000,0000,0000,,versus the four percent that I mentioned to you
Dialogue: 0,0:39:50.73,0:39:55.63,Default,,0000,0000,0000,,that have the 70 percent in the patients versus four percent in the controls.
Dialogue: 0,0:39:55.63,0:39:59.12,Default,,0000,0000,0000,,The other study that was positive is a study from Boston
Dialogue: 0,0:39:59.12,0:40:03.42,Default,,0000,0000,0000,,when it was not 70 percent, it was almost 87 percent,
Dialogue: 0,0:40:03.42,0:40:06.52,Default,,0000,0000,0000,,and in controls it was about 7 percent.
Dialogue: 0,0:40:06.52,0:40:10.51,Default,,0000,0000,0000,,All the other studies, all the studies in Europe have been negative;
Dialogue: 0,0:40:10.51,0:40:15.21,Default,,0000,0000,0000,,the other studies, other than those two in the United States, have been negative,
Dialogue: 0,0:40:15.21,0:40:21.33,Default,,0000,0000,0000,,except one small one that has not been fully reported that was also positive from New York City.
Dialogue: 0,0:40:21.33,0:40:25.45,Default,,0000,0000,0000,,so it is a mystery, it's a challenge, it's a controversy,
Dialogue: 0,0:40:25.45,0:40:28.65,Default,,0000,0000,0000,,and we just have to step up to the challenge and solve it
Dialogue: 0,0:40:28.65,0:40:33.50,Default,,0000,0000,0000,,for the patients and not shy away and not take a position
Dialogue: 0,0:40:33.50,0:40:36.97,Default,,0000,0000,0000,,he has been really disappointing to me to see how
Dialogue: 0,0:40:36.97,0:40:40.93,Default,,0000,0000,0000,,colleagues who do not find the same thing that others do
Dialogue: 0,0:40:40.93,0:40:44.91,Default,,0000,0000,0000,,step up to the podium and said, "The other findings are wrong;
Dialogue: 0,0:40:44.91,0:40:49.20,Default,,0000,0000,0000,,we find the truth," et cetera. We are not going to be able able to solve this disease
Dialogue: 0,0:40:49.20,0:40:53.39,Default,,0000,0000,0000,,through taking dogmatic positions like this. So it is controversial
Dialogue: 0,0:40:53.39,0:40:56.91,Default,,0000,0000,0000,,but no group has produced proof
Dialogue: 0,0:40:56.91,0:41:01.18,Default,,0000,0000,0000,,that the association is there; nor any group has produced proof
Dialogue: 0,0:41:01.18,0:41:06.21,Default,,0000,0000,0000,,that it's not there. The retroviruses--this is a retrovirus--
Dialogue: 0,0:41:06.21,0:41:09.84,Default,,0000,0000,0000,,they have a great capacity to hide and to do
Dialogue: 0,0:41:09.84,0:41:13.91,Default,,0000,0000,0000,,bad things, either in a long period of range
Dialogue: 0,0:41:13.91,0:41:17.70,Default,,0000,0000,0000,,or very short. It's the same group with the HIV virus
Dialogue: 0,0:41:17.70,0:41:21.21,Default,,0000,0000,0000,,but it's not HIV. A kind of
Dialogue: 0,0:41:21.21,0:41:25.50,Default,,0000,0000,0000,,unique life cycle where they can get very cleverly
Dialogue: 0,0:41:25.50,0:41:28.96,Default,,0000,0000,0000,,inside the cell and they can integrate into the human
Dialogue: 0,0:41:28.96,0:41:32.00,Default,,0000,0000,0000,,genetic material, hence their ability to hide
Dialogue: 0,0:41:32.00,0:41:35.70,Default,,0000,0000,0000,,and to cause, in a very sneaky way,
Dialogue: 0,0:41:35.70,0:41:39.36,Default,,0000,0000,0000,,disease (in) us. There are several kinds;
Dialogue: 0,0:41:39.36,0:41:44.60,Default,,0000,0000,0000,,this XMRV virus came from mice--no question about it--
Dialogue: 0,0:41:44.60,0:41:48.89,Default,,0000,0000,0000,,and some of those viruses have mutated to the point that they are only
Dialogue: 0,0:41:48.89,0:41:49.82,Default,,0000,0000,0000,,able to stay in humans;
Dialogue: 0,0:41:49.82,0:41:53.19,Default,,0000,0000,0000,,there are others that can be in mice and humans,
Dialogue: 0,0:41:53.19,0:41:57.11,Default,,0000,0000,0000,,and there are others that cannot be in humans. So there are different kinds,
Dialogue: 0,0:41:57.11,0:42:00.61,Default,,0000,0000,0000,,but the reality is that the question is out there
Dialogue: 0,0:42:00.61,0:42:04.34,Default,,0000,0000,0000,,and it needs to be solved. And we as America
Dialogue: 0,0:42:04.34,0:42:07.64,Default,,0000,0000,0000,,and the scientific community need to step up and
Dialogue: 0,0:42:07.64,0:42:12.57,Default,,0000,0000,0000,,solve the mystery. There are different ways to measure the virus, so that's
Dialogue: 0,0:42:12.57,0:42:16.74,Default,,0000,0000,0000,,possibly part of the problem. There are ways to measure the actual virus;
Dialogue: 0,0:42:16.74,0:42:20.85,Default,,0000,0000,0000,,with measuring the nuclear acid to look at the proteins,
Dialogue: 0,0:42:20.85,0:42:23.99,Default,,0000,0000,0000,,to look at the cultural dividers, to look at
Dialogue: 0,0:42:23.99,0:42:29.74,Default,,0000,0000,0000,,how the antibody responds in humans to the virus, as a way to detect the virus--
Dialogue: 0,0:42:29.74,0:42:33.44,Default,,0000,0000,0000,,So there are different methods that make it a little bit more difficult, but not
Dialogue: 0,0:42:33.44,0:42:37.53,Default,,0000,0000,0000,,impossible, to understand what is happening. Also,
Dialogue: 0,0:42:37.53,0:42:40.89,Default,,0000,0000,0000,,people, or different laboratories, using different
Dialogue: 0,0:42:40.89,0:42:44.35,Default,,0000,0000,0000,,reagents; they use different
Dialogue: 0,0:42:44.35,0:42:49.33,Default,,0000,0000,0000,,positive or negative controls; the virus appears to be in very small amounts,
Dialogue: 0,0:42:49.33,0:42:52.99,Default,,0000,0000,0000,,so that makes it hard for people to find it.
Dialogue: 0,0:42:52.99,0:42:57.96,Default,,0000,0000,0000,,And also, the studies come from different geographical areas.
Dialogue: 0,0:42:57.96,0:43:01.10,Default,,0000,0000,0000,,Infectious diseases is characterized by this.
Dialogue: 0,0:43:01.10,0:43:05.90,Default,,0000,0000,0000,,There are infections that present only in the United States and ever seen in Europe.
Dialogue: 0,0:43:05.90,0:43:10.57,Default,,0000,0000,0000,,There are infections that are only seen in Latin America, never seen outside
Dialogue: 0,0:43:10.57,0:43:14.17,Default,,0000,0000,0000,,the Americas. So this is not news--
Dialogue: 0,0:43:14.17,0:43:17.29,Default,,0000,0000,0000,,that an infectious agent could be restricted to certain geographical
Dialogue: 0,0:43:17.29,0:43:21.89,Default,,0000,0000,0000,,locales, and it could be the case in this situation as well.
Dialogue: 0,0:43:21.89,0:43:25.20,Default,,0000,0000,0000,,So what is the bottom line? What is the bottom line with this
Dialogue: 0,0:43:25.20,0:43:28.61,Default,,0000,0000,0000,,XMRV virus? It can be present
Dialogue: 0,0:43:28.61,0:43:33.31,Default,,0000,0000,0000,,in people who have no disease. And it could be, according to the study so far
Dialogue: 0,0:43:33.31,0:43:37.65,Default,,0000,0000,0000,,up to seven percent. It can be present in patients with prostate cancer:
Dialogue: 0,0:43:37.65,0:43:41.75,Default,,0000,0000,0000,,up to 27 percent. It can can be present in patients with CFS:
Dialogue: 0,0:43:41.75,0:43:47.23,Default,,0000,0000,0000,,up to 87 percent. All the European studies have been negative so far.
Dialogue: 0,0:43:47.23,0:43:51.39,Default,,0000,0000,0000,,In the study from Boston, there were patients who were positive
Dialogue: 0,0:43:51.39,0:43:54.48,Default,,0000,0000,0000,,in blood samples that had been taken fifty years
Dialogue: 0,0:43:54.48,0:43:58.39,Default,,0000,0000,0000,,ago--they went to those patients again, they got blood again, and they were
Dialogue: 0,0:43:58.39,0:43:59.71,Default,,0000,0000,0000,,positive again.
Dialogue: 0,0:43:59.71,0:44:02.78,Default,,0000,0000,0000,,so we know that the virus can be there
Dialogue: 0,0:44:02.78,0:44:06.89,Default,,0000,0000,0000,,for long periods of time. And obviously
Dialogue: 0,0:44:06.89,0:44:09.52,Default,,0000,0000,0000,,we need to have the right studies
Dialogue: 0,0:44:09.52,0:44:13.67,Default,,0000,0000,0000,,in a smart way and we are fortunate, the Stanford group is fortunate,
Dialogue: 0,0:44:13.67,0:44:18.00,Default,,0000,0000,0000,,to be associated now with a group at Columbia
Dialogue: 0,0:44:18.00,0:44:22.99,Default,,0000,0000,0000,,with directions, and the directions of the NIH, to hopefully be able
Dialogue: 0,0:44:22.99,0:44:25.22,Default,,0000,0000,0000,,to provide the right kind of data that will help
Dialogue: 0,0:44:25.22,0:44:29.58,Default,,0000,0000,0000,,to support one way or the other. And another possibility
Dialogue: 0,0:44:29.58,0:44:34.13,Default,,0000,0000,0000,,is to do a specific intervention, because the drugs that work against a virus
Dialogue: 0,0:44:34.13,0:44:38.49,Default,,0000,0000,0000,,are very specific. In the next few minutes,
Dialogue: 0,0:44:38.49,0:44:44.15,Default,,0000,0000,0000,,I would like to share with you how at Stanford we have tried to put this together
Dialogue: 0,0:44:44.15,0:44:47.68,Default,,0000,0000,0000,,as a model of pathogenesis of this disease.
Dialogue: 0,0:44:47.68,0:44:52.18,Default,,0000,0000,0000,,So as I told you before, it is known that some patients start with infection
Dialogue: 0,0:44:52.18,0:44:55.44,Default,,0000,0000,0000,,and that the more severe the infection at the beginning,
Dialogue: 0,0:44:55.44,0:44:59.29,Default,,0000,0000,0000,,the higher is the chance that they go into chronic fatigue syndrome.
Dialogue: 0,0:44:59.29,0:45:03.69,Default,,0000,0000,0000,,Most of the infections that have associated with
Dialogue: 0,0:45:03.69,0:45:07.18,Default,,0000,0000,0000,,chronic fatigue syndrome are intracellular: they hide
Dialogue: 0,0:45:07.18,0:45:11.33,Default,,0000,0000,0000,,inside the cell. They like to go to the brain;
Dialogue: 0,0:45:11.33,0:45:15.23,Default,,0000,0000,0000,,they like to go to the lymph nodes. So I think that they are telling us something
Dialogue: 0,0:45:15.23,0:45:19.39,Default,,0000,0000,0000,,there from a mechanistic point of view. Several
Dialogue: 0,0:45:19.39,0:45:22.72,Default,,0000,0000,0000,,infections can do the same thing; they can
Dialogue: 0,0:45:22.72,0:45:26.19,Default,,0000,0000,0000,,trigger CFS. I think that this is telling us
Dialogue: 0,0:45:26.19,0:45:29.19,Default,,0000,0000,0000,,that what is most likely responsible for
Dialogue: 0,0:45:29.19,0:45:33.49,Default,,0000,0000,0000,,the problem it's not the organism itself attacking the patient, but it's the
Dialogue: 0,0:45:33.49,0:45:35.98,Default,,0000,0000,0000,,immune response to them.
Dialogue: 0,0:45:35.99,0:45:38.50,Default,,0000,0000,0000,,Several of them can do it; the severe ones seem to be
Dialogue: 0,0:45:38.50,0:45:43.14,Default,,0000,0000,0000,,doing it more successfully, so it's likely that is the immune response against them
Dialogue: 0,0:45:43.14,0:45:46.34,Default,,0000,0000,0000,,what is doing it. It's possible
Dialogue: 0,0:45:46.34,0:45:49.90,Default,,0000,0000,0000,,that it is doing it because they all share something in common
Dialogue: 0,0:45:49.90,0:45:53.00,Default,,0000,0000,0000,,that triggers the same immune response that is damaging
Dialogue: 0,0:45:53.00,0:45:56.81,Default,,0000,0000,0000,,or that they00:02:18,150 --> 00:02:21,330\Nfor 23 years.
Dialogue: 0,0:02:21.33,0:02:24.94,Default,,0000,0000,0000,,Twenty-three years. She had a wonderful life;
Dialogue: 0,0:02:24.94,0:02:28.78,Default,,0000,0000,0000,,she has a supporting and loving husband--
Dialogue: 0,0:02:28.78,0:02:32.32,Default,,0000,0000,0000,,still he's with her--who works for a high-tech company,
Dialogue: 0,0:02:32.32,0:02:37.47,Default,,0000,0000,0000,,two super children, enjoy her full-time jobs as a sales manager
Dialogue: 0,0:02:37.47,0:02:42.45,Default,,0000,0000,0000,,and as a housemaker. Being a housewife or a housemaker, as you know, is
Dialogue: 0,0:02:42.45,0:02:43.95,Default,,0000,0000,0000,,a full-time job on its own.
Dialogue: 0,0:02:43.95,0:02:48.74,Default,,0000,0000,0000,,She had two full-time jobs. And she was the source of constant joy
Dialogue: 0,0:02:48.74,0:02:53.12,Default,,0000,0000,0000,,for her family and friends. She had probably achieved what many will call the
Dialogue: 0,0:02:53.12,0:02:54.90,Default,,0000,0000,0000,,"American Dream."
Dialogue: 0,0:02:54.90,0:02:57.88,Default,,0000,0000,0000,,In 1985, that dream came to a stop.
Dialogue: 0,0:02:57.88,0:03:02.14,Default,,0000,0000,0000,,At the age of 30, and after giving birth to her first child,
Dialogue: 0,0:03:02.14,0:03:06.68,Default,,0000,0000,0000,,she developed fatigue--fatigue that became worse over the
Dialogue: 0,0:03:06.68,0:03:10.34,Default,,0000,0000,0000,,next 23 years, becoming disabling
Dialogue: 0,0:03:10.34,0:03:14.10,Default,,0000,0000,0000,,in 2003. She can only do 30
Dialogue: 0,0:03:14.10,0:03:17.33,Default,,0000,0000,0000,,percent of what she was capable of doing before she fell ill.
Dialogue: 0,0:03:17.33,0:03:20.73,Default,,0000,0000,0000,,Even running small errands, like going to grocery
Dialogue: 0,0:03:20.73,0:03:25.23,Default,,0000,0000,0000,,shopping, has become a major ordeal. Here we have
Dialogue: 0,0:03:25.23,0:03:28.77,Default,,0000,0000,0000,,a life that has come to a standstill:
Dialogue: 0,0:03:28.77,0:03:33.61,Default,,0000,0000,0000,,Thirty percent of what she's capable of doing for 23 years.
Dialogue: 0,0:03:33.61,0:03:38.21,Default,,0000,0000,0000,,So I want you to carefully weigh everything that is being presented to you; this is
Dialogue: 0,0:03:38.21,0:03:39.43,Default,,0000,0000,0000,,a real case.
Dialogue: 0,0:03:39.43,0:03:43.12,Default,,0000,0000,0000,,So how is it possible to live with a disease
Dialogue: 0,0:03:43.12,0:03:47.13,Default,,0000,0000,0000,,that makes you be thirty percent of who you are, and still
Dialogue: 0,0:03:47.13,0:03:50.41,Default,,0000,0000,0000,,be able to live with that for 23 years?
Dialogue: 0,0:03:50.41,0:03:53.58,Default,,0000,0000,0000,,In addition to that primary, persistant
Dialogue: 0,0:03:53.58,0:03:56.94,Default,,0000,0000,0000,,fatigue, she develops other worrisome symptoms:
Dialogue: 0,0:03:56.94,0:04:00.87,Default,,0000,0000,0000,,Brain fog. It's not uncommon for patients to tell you
Dialogue: 0,0:04:00.87,0:04:06.30,Default,,0000,0000,0000,,they have brain fog. And it's expressed by significant cognitive impairment--
Dialogue: 0,0:04:06.30,0:04:11.43,Default,,0000,0000,0000,,all the way to 30 percent. So 70 percent of her brain function
Dialogue: 0,0:04:11.43,0:04:14.46,Default,,0000,0000,0000,,was taken, or has been taken, by her illness.
Dialogue: 0,0:04:14.46,0:04:20.25,Default,,0000,0000,0000,,mental tasks leave her fatigued; compiling information became extremely difficult;
Dialogue: 0,0:04:20.25,0:04:25.33,Default,,0000,0000,0000,,she feels jumbled and confused. She in addition has had headaches,
Dialogue: 0,0:04:25.33,0:04:28.96,Default,,0000,0000,0000,,cough, sore throats, unrefreshing sleep.
Dialogue: 0,0:04:28.96,0:04:32.21,Default,,0000,0000,0000,,She wakes up in the morning as if she would have not slept--
Dialogue: 0,0:04:32.21,0:04:35.71,Default,,0000,0000,0000,,she had not slept the night before--with the same level
Dialogue: 0,0:04:35.71,0:04:41.39,Default,,0000,0000,0000,,of tiredness as when she bed. Post-exertional malaise.
Dialogue: 0,0:04:41.40,0:04:46.54,Default,,0000,0000,0000,,Not many diseases--and I see respectable physicians here in the audience--
Dialogue: 0,0:04:46.54,0:04:51.32,Default,,0000,0000,0000,,not many diseases will give you what the patients with chronic fatigue syndrome
Dialogue: 0,0:04:51.32,0:04:52.33,Default,,0000,0000,0000,,experience
Dialogue: 0,0:04:52.33,0:04:56.65,Default,,0000,0000,0000,,when they overdo it. And overdoing it can be just running a small errand.
Dialogue: 0,0:04:56.65,0:05:00.71,Default,,0000,0000,0000,,Overdoing can be walking a mile. But after that
Dialogue: 0,0:05:00.71,0:05:04.00,Default,,0000,0000,0000,,level of exercise, or that level
Dialogue: 0,0:05:04.00,0:05:07.89,Default,,0000,0000,0000,,of, of putting the body through that stress--and it could be mental,
Dialogue: 0,0:05:07.89,0:05:11.44,Default,,0000,0000,0000,,could be emotional, cognitive
Dialogue: 0,0:05:11.44,0:05:14.68,Default,,0000,0000,0000,,or physical--they go into a crash
Dialogue: 0,0:05:14.68,0:05:18.38,Default,,0000,0000,0000,,period. It's not the physical
Dialogue: 0,0:05:18.38,0:05:21.63,Default,,0000,0000,0000,,sort of strain that you experience when you go and run
Dialogue: 0,0:05:21.63,0:05:25.64,Default,,0000,0000,0000,,a whole mountain, around miles when you are healthy, your feel tired afterwards
Dialogue: 0,0:05:25.64,0:05:26.37,Default,,0000,0000,0000,,but you have the
Dialogue: 0,0:05:26.37,0:05:29.69,Default,,0000,0000,0000,,endorphin kick that makes you feel good because you did a lot of
Dialogue: 0,0:05:29.69,0:05:33.16,Default,,0000,0000,0000,,exercise or physical activity. It is not that.
Dialogue: 0,0:05:33.16,0:05:37.11,Default,,0000,0000,0000,,It's a crash where the patient feels sick, many times with the feeling
Dialogue: 0,0:05:37.11,0:05:40.18,Default,,0000,0000,0000,,of having a flu. In addition to
Dialogue: 0,0:05:40.18,0:05:44.33,Default,,0000,0000,0000,,post-exertional malaise, she feels muscle pain,
Dialogue: 0,0:05:44.33,0:05:48.44,Default,,0000,0000,0000,,joint pain. Her primary care provider
Dialogue: 0,0:05:48.44,0:05:52.56,Default,,0000,0000,0000,,is arguably one of the best internists in the Bay Area.
Dialogue: 0,0:05:52.56,0:05:57.36,Default,,0000,0000,0000,,And she has been fortunate to have him, because he has been there for her
Dialogue: 0,0:05:57.36,0:06:01.68,Default,,0000,0000,0000,,for all this period, being sure she doesn't have a cancer,
Dialogue: 0,0:06:01.68,0:06:05.27,Default,,0000,0000,0000,,low thyroid, a rheumatological disease--
Dialogue: 0,0:06:05.27,0:06:10.13,Default,,0000,0000,0000,,he has been so careful in being sure that we don't treat her as (having) chronic fatigue syndrome
Dialogue: 0,0:06:10.13,0:06:13.99,Default,,0000,0000,0000,,when in fact she could have had something else that can be put in a box,
Dialogue: 0,0:06:13.99,0:06:18.54,Default,,0000,0000,0000,,and it can be treated from, you know, day one to day X.
Dialogue: 0,0:06:18.54,0:06:22.29,Default,,0000,0000,0000,,And, most importantly, he believes that her
Dialogue: 0,0:06:22.29,0:06:26.37,Default,,0000,0000,0000,,illness is real. I cannot tell you that--
Dialogue: 0,0:06:26.37,0:06:30.90,Default,,0000,0000,0000,,--whatever we are doing at Stanford that may have worked, and we are
Dialogue: 0,0:06:30.90,0:06:34.72,Default,,0000,0000,0000,,pleased with those results, may have worked for some patients--
Dialogue: 0,0:06:34.72,0:06:38.17,Default,,0000,0000,0000,,it could be still (up) for debate. We still have to do a lot of more work
Dialogue: 0,0:06:38.17,0:06:38.79,Default,,0000,0000,0000,,to understand
Dialogue: 0,0:06:38.79,0:06:41.90,Default,,0000,0000,0000,,what are we doing to the patients, that some of them have
Dialogue: 0,0:06:41.90,0:06:46.70,Default,,0000,0000,0000,,gotten better. But the one thing: a hundred percent of--and not all of the
Dialogue: 0,0:06:46.70,0:06:48.33,Default,,0000,0000,0000,,patients get better, unfortunately--
Dialogue: 0,0:06:48.33,0:06:51.34,Default,,0000,0000,0000,,--but the one thing that I can tell you, that a hundred percent of the patients
Dialogue: 0,0:06:51.34,0:06:52.53,Default,,0000,0000,0000,,are grateful,
Dialogue: 0,0:06:52.53,0:06:56.49,Default,,0000,0000,0000,,is when we tell them, "You have a real disease."
Dialogue: 0,0:06:56.50,0:06:59.99,Default,,0000,0000,0000,,And they break down there. Because for the first time they find somebody in the
Dialogue: 0,0:06:59.99,0:07:01.74,Default,,0000,0000,0000,,medical community
Dialogue: 0,0:07:01.74,0:07:05.99,Default,,0000,0000,0000,,telling them, "You are not lying, you are not faking, you are not malingering;
Dialogue: 0,0:07:05.99,0:07:09.94,Default,,0000,0000,0000,,you have a disease you have no control on."
Dialogue: 0,0:07:09.94,0:07:14.22,Default,,0000,0000,0000,,And then, then they feel at least validated. So it's very important for--
Dialogue: 0,0:07:14.22,0:07:18.85,Default,,0000,0000,0000,,hopefully, one day, my dream is that our medical community
Dialogue: 0,0:07:18.85,0:07:22.83,Default,,0000,0000,0000,,will produce a formal apology to the patients
Dialogue: 0,0:07:22.83,0:07:26.28,Default,,0000,0000,0000,,for not having believed them all these years, that they were facing
Dialogue: 0,0:07:26.28,0:07:31.31,Default,,0000,0000,0000,,a real illness. It's true that currently we don't have a single way
Dialogue: 0,0:07:31.31,0:07:34.61,Default,,0000,0000,0000,,to determine that somebody has CFS in an objective way.
Dialogue: 0,0:07:34.61,0:07:37.66,Default,,0000,0000,0000,,It's true that we don't have a single treatment, but
Dialogue: 0,0:07:37.66,0:07:41.84,Default,,0000,0000,0000,,the patients do have a real disease.
Dialogue: 0,0:07:41.84,0:07:44.95,Default,,0000,0000,0000,,The fact that the patients give you so much
Dialogue: 0,0:07:44.95,0:07:48.94,Default,,0000,0000,0000,,history of suffering, and that is incapacitating,
Dialogue: 0,0:07:48.94,0:07:53.16,Default,,0000,0000,0000,,that when you try to look for objective signs that
Dialogue: 0,0:07:53.16,0:07:58.30,Default,,0000,0000,0000,,that, that correlates with what they are telling you--that dichotomy between
Dialogue: 0,0:07:58.30,0:08:01.33,Default,,0000,0000,0000,,they telling you, "I am so sick, I cannot
Dialogue: 0,0:08:01.33,0:08:04.78,Default,,0000,0000,0000,,even leave the house." But then when you do testing,
Dialogue: 0,0:08:04.78,0:08:08.68,Default,,0000,0000,0000,,when you examine them, you do not find anything that is
Dialogue: 0,0:08:08.69,0:08:11.81,Default,,0000,0000,0000,,palpable or tangile, that is not new.
Dialogue: 0,0:08:11.81,0:08:15.76,Default,,0000,0000,0000,,Even back in the 1900s, when physicians
Dialogue: 0,0:08:15.76,0:08:19.34,Default,,0000,0000,0000,,who had this special skill
Dialogue: 0,0:08:19.34,0:08:24.20,Default,,0000,0000,0000,,for having, for finding diseases in the physical exam, like William Osler
Dialogue: 0,0:08:24.20,0:08:28.62,Default,,0000,0000,0000,,famously said, "In all forms there is a striking lack of accordance
Dialogue: 0,0:08:28.62,0:08:32.14,Default,,0000,0000,0000,,between the symptoms of which the patients complain and the objective
Dialogue: 0,0:08:32.14,0:08:36.99,Default,,0000,0000,0000,,changes discoverable by the physician." So it has been more than two hundred years that
Dialogue: 0,0:08:36.99,0:08:42.76,Default,,0000,0000,0000,,that discordance is known, but what is sad is that it has been equated
Dialogue: 0,0:08:42.76,0:08:46.34,Default,,0000,0000,0000,,to the patient has something that is in their head, something that they have
Dialogue: 0,0:08:46.34,0:08:50.25,Default,,0000,0000,0000,,control, just with their minds. So CFS
Dialogue: 0,0:08:50.25,0:08:53.83,Default,,0000,0000,0000,,is a real disease. It's experienced by
Dialogue: 0,0:08:53.83,0:08:59.62,Default,,0000,0000,0000,,one to four million Americans, perhaps 17 or more million people (it's worldwide);
Dialogue: 0,0:08:59.62,0:09:04.46,Default,,0000,0000,0000,,there are no diagnostic tests that can identify with certainty
Dialogue: 0,0:09:04.46,0:09:09.20,Default,,0000,0000,0000,,the patient. Pneumonia: pneumonia, for example,
Dialogue: 0,0:09:09.20,0:09:12.36,Default,,0000,0000,0000,,is an infection. And when a patient has cough,
Dialogue: 0,0:09:12.36,0:09:15.90,Default,,0000,0000,0000,,and fever, and tired, and sore throat,
Dialogue: 0,0:09:15.90,0:09:19.21,Default,,0000,0000,0000,,we do a chest X-ray and we see something. We see
Dialogue: 0,0:09:19.21,0:09:23.70,Default,,0000,0000,0000,,a shadow in that chest X-ray, and we say the patient has pneumonia.
Dialogue: 0,0:09:23.70,0:09:27.79,Default,,0000,0000,0000,,We don't have the equivalent to that shadow in CFS.
Dialogue: 0,0:09:27.79,0:09:31.90,Default,,0000,0000,0000,,We desperately need that, and this is one of the goals that we have set
Dialogue: 0,0:09:31.90,0:09:35.98,Default,,0000,0000,0000,,our group at Stanford, is to one day be able to tell our patients,
Dialogue: 0,0:09:35.98,0:09:40.23,Default,,0000,0000,0000,,"Yes, you have a shadow in your chest X-ray, CFS disease,
Dialogue: 0,0:09:40.23,0:09:43.81,Default,,0000,0000,0000,,and yes, that validates you. There are no
Dialogue: 0,0:09:43.81,0:09:46.89,Default,,0000,0000,0000,,definitive treatments, and I'll tell you the
Dialogue: 0,0:09:46.89,0:09:50.89,Default,,0000,0000,0000,,small progress that we have made at Stanford with some groups of patients in
Dialogue: 0,0:09:50.89,0:09:51.96,Default,,0000,0000,0000,,this regard,
Dialogue: 0,0:09:51.96,0:09:55.29,Default,,0000,0000,0000,,and it's true that some patients spontaneously improve,
Dialogue: 0,0:09:55.29,0:10:00.58,Default,,0000,0000,0000,,but after a certain period of time, their rate of improvement really is small.
Dialogue: 0,0:10:00.58,0:10:04.44,Default,,0000,0000,0000,,It could be as high as seventy, eighty percent
Dialogue: 0,0:10:04.44,0:10:09.19,Default,,0000,0000,0000,,in the first year of disease, but it becomes really much lower
Dialogue: 0,0:10:09.19,0:10:12.87,Default,,0000,0000,0000,,as the years come (pass).
Dialogue: 0,0:10:12.87,0:10:16.95,Default,,0000,0000,0000,,So what makes CFS such a difficult challenge?
Dialogue: 0,0:10:16.95,0:10:20.99,Default,,0000,0000,0000,,We have, of course, compassionate colleagues and
Dialogue: 0,0:10:20.99,0:10:24.46,Default,,0000,0000,0000,,people who are extremely smart in our schools and
Dialogue: 0,0:10:24.46,0:10:27.86,Default,,0000,0000,0000,,in offices, but what makes it so hard
Dialogue: 0,0:10:27.86,0:10:31.69,Default,,0000,0000,0000,,not to see it many times as a real disease, for one side,
Dialogue: 0,0:10:31.69,0:10:35.93,Default,,0000,0000,0000,,is the fact that there are so many symptoms coming from so many angles.
Dialogue: 0,0:10:35.93,0:10:40.29,Default,,0000,0000,0000,,We physicians have this thinking that if you give us a symptom,
Dialogue: 0,0:10:40.29,0:10:43.31,Default,,0000,0000,0000,,we try to look for what organ it's coming from.
Dialogue: 0,0:10:43.31,0:10:46.79,Default,,0000,0000,0000,,So the cough could be coming from the lungs,
Dialogue: 0,0:10:46.79,0:10:51.56,Default,,0000,0000,0000,,from the heart, from a medication, occasionally from some area of the brain,
Dialogue: 0,0:10:51.56,0:10:55.42,Default,,0000,0000,0000,,so we start to see where the organ that is involved.
Dialogue: 0,0:10:55.42,0:10:58.55,Default,,0000,0000,0000,,And many times the symptoms sort of like,
Dialogue: 0,0:10:58.55,0:11:02.67,Default,,0000,0000,0000,,are [related] to a single system, to an organ, but when the patient
Dialogue: 0,0:11:02.67,0:11:07.18,Default,,0000,0000,0000,,gives you, with validity, the symptoms coming from so many organs:
Dialogue: 0,0:11:07.18,0:11:10.35,Default,,0000,0000,0000,,muscle pain, joint pain, brain fog,
Dialogue: 0,0:11:10.35,0:11:14.90,Default,,0000,0000,0000,,fatigue, et cetera, then it's hard for a physician to take,
Dialogue: 0,0:11:14.90,0:11:18.65,Default,,0000,0000,0000,,"What do I do with this?" So it's the constellation,
Dialogue: 0,0:11:18.65,0:11:22.43,Default,,0000,0000,0000,,it's the complexity, it's the fact that they are so hetereogeneous
Dialogue: 0,0:11:22.43,0:11:26.51,Default,,0000,0000,0000,,that has made this disease difficult to deal with.
Dialogue: 0,0:11:26.51,0:11:29.68,Default,,0000,0000,0000,,And things will only get worse when we have
Dialogue: 0,0:11:29.68,0:11:33.48,Default,,0000,0000,0000,,health care systems that only allow physicians for the first visit
Dialogue: 0,0:11:33.48,0:11:37.68,Default,,0000,0000,0000,,45 minutes or 60 minutes, and for follow-up, 15 minutes or 20 minutes.
Dialogue: 0,0:11:37.68,0:11:38.46,Default,,0000,0000,0000,,That's going to get
Dialogue: 0,0:11:38.46,0:11:42.25,Default,,0000,0000,0000,,only worse. The disease is disabling,
Dialogue: 0,0:11:42.25,0:11:46.59,Default,,0000,0000,0000,,the combination of symptoms--not only is the fatigue the central core
Dialogue: 0,0:11:46.59,0:11:50.52,Default,,0000,0000,0000,,of the symptom, but what I refer to you as brain fog.
Dialogue: 0,0:11:50.52,0:11:53.95,Default,,0000,0000,0000,,Unfortunately, the name "chronic fatigue syndrome"
Dialogue: 0,0:11:53.95,0:11:57.59,Default,,0000,0000,0000,,has not served well the disease or the patients.
Dialogue: 0,0:11:57.59,0:12:01.00,Default,,0000,0000,0000,,There are other symptoms. It's not just the fatigue.
Dialogue: 0,0:12:01.00,0:12:04.85,Default,,0000,0000,0000,,And the most and the recognized symptom in patients with chronic fatigue
Dialogue: 0,0:12:04.85,0:12:07.00,Default,,0000,0000,0000,,syndrome is the cognitive impairment.
Dialogue: 0,0:12:07.00,0:12:11.34,Default,,0000,0000,0000,,It is real. It is there. It incapacitates patients.
Dialogue: 0,0:12:11.34,0:12:14.38,Default,,0000,0000,0000,,Patients say that they have difficulty concentrating,
Dialogue: 0,0:12:14.38,0:12:18.23,Default,,0000,0000,0000,,finding words; they cannot produce the same level
Dialogue: 0,0:12:18.23,0:12:21.23,Default,,0000,0000,0000,,of executive function that they used to exercise,
Dialogue: 0,0:12:21.23,0:12:24.54,Default,,0000,0000,0000,,and they cannot sustain those activities for much.
Dialogue: 0,0:12:24.54,0:12:29.12,Default,,0000,0000,0000,,They also have sleep problems and pains in the joints and muscles.
Dialogue: 0,0:12:29.12,0:12:33.20,Default,,0000,0000,0000,,They usually have the disease for six months or longer.
Dialogue: 0,0:12:33.20,0:12:37.61,Default,,0000,0000,0000,,So we are trying to differentiate those situations where you get the fatigue
Dialogue: 0,0:12:37.61,0:12:41.49,Default,,0000,0000,0000,,and fortunately it goes away
Dialogue: 0,0:12:41.49,0:12:45.86,Default,,0000,0000,0000,,within a short period of time. So it has generally been agreed upon
Dialogue: 0,0:12:45.86,0:12:49.82,Default,,0000,0000,0000,,that if you have the fatigue for more than six months is when you have to worry
Dialogue: 0,0:12:49.82,0:12:53.19,Default,,0000,0000,0000,,about the possibility that initial illness
Dialogue: 0,0:12:53.19,0:12:56.47,Default,,0000,0000,0000,,could have been the beginning of the nightmare
Dialogue: 0,0:12:56.47,0:13:00.16,Default,,0000,0000,0000,,that will ensue months or years later.
Dialogue: 0,0:13:00.16,0:13:03.92,Default,,0000,0000,0000,,Many patients--many patients will tell you
Dialogue: 0,0:13:03.92,0:13:07.24,Default,,0000,0000,0000,,that their nightmare began with a
Dialogue: 0,0:13:07.24,0:13:10.39,Default,,0000,0000,0000,,viral-like illness. They will tell you that. They are--
Dialogue: 0,0:13:10.39,0:13:13.93,Default,,0000,0000,0000,,you know, the way I see this disease is that,
Dialogue: 0,0:13:13.93,0:13:18.47,Default,,0000,0000,0000,,it is speaking to us. It is telling us the clue--it's giving us the clues,
Dialogue: 0,0:13:18.47,0:13:21.65,Default,,0000,0000,0000,,we just have not had the patience
Dialogue: 0,0:13:21.65,0:13:24.98,Default,,0000,0000,0000,,and the time
Dialogue: 0,0:13:24.98,0:13:28.00,Default,,0000,0000,0000,,to really listen to the clues that the disease is giving us there.
Dialogue: 0,0:13:28.00,0:13:31.35,Default,,0000,0000,0000,,But they tell us, "I was totally fine."
Dialogue: 0,0:13:31.35,0:13:35.22,Default,,0000,0000,0000,,And they give you the month. Sometimes they give you the date,
Dialogue: 0,0:13:35.22,0:13:38.49,Default,,0000,0000,0000,,the day of the month, and the year, when their whole
Dialogue: 0,0:13:38.49,0:13:42.60,Default,,0000,0000,0000,,life crumbled, like the patient that I illustrated to you.
Dialogue: 0,0:13:42.60,0:13:47.24,Default,,0000,0000,0000,,It is important, however, every time that somebody says that they have
Dialogue: 0,0:13:47.24,0:13:47.95,Default,,0000,0000,0000,,chronic fatigue syndrome,
Dialogue: 0,0:13:47.95,0:13:51.76,Default,,0000,0000,0000,,that we rule out other potential explanations
Dialogue: 0,0:13:51.76,0:13:55.37,Default,,0000,0000,0000,,that are more circumscribed to a single
Dialogue: 0,0:13:55.37,0:14:00.88,Default,,0000,0000,0000,,ideology or cause that can be fixed relatively quick.
Dialogue: 0,0:14:00.88,0:14:04.71,Default,,0000,0000,0000,,This is this study that validates what the patients have been telling us
Dialogue: 0,0:14:04.71,0:14:08.24,Default,,0000,0000,0000,,all along. This is a study that was done in Australia,
Dialogue: 0,0:14:08.24,0:14:12.65,Default,,0000,0000,0000,,where they have the capacity and resources, that as soon as somebody gets
Dialogue: 0,0:14:12.65,0:14:14.50,Default,,0000,0000,0000,,diagnosed with acute
Dialogue: 0,0:14:14.50,0:14:18.72,Default,,0000,0000,0000,,infectious mononucleosis, or Epstein-Barr virus infection,
Dialogue: 0,0:14:18.72,0:14:22.25,Default,,0000,0000,0000,,or another infection that they have common in Australia called
Dialogue: 0,0:14:22.25,0:14:25.29,Default,,0000,0000,0000,,Q fever. Q fever can go into the lungs,
Dialogue: 0,0:14:25.29,0:14:29.94,Default,,0000,0000,0000,,can go into the heart. It's called Q fever, caused by an organism called
Dialogue: 0,0:14:29.94,0:14:31.65,Default,,0000,0000,0000,,Coxiella burnetii.
Dialogue: 0,0:14:31.65,0:14:35.61,Default,,0000,0000,0000,,Or another infection they call Ross River virus.
Dialogue: 0,0:14:35.61,0:14:39.79,Default,,0000,0000,0000,,For the purposes of this conversation, these physicians in Australia have the
Dialogue: 0,0:14:39.79,0:14:40.99,Default,,0000,0000,0000,,capacity
Dialogue: 0,0:14:40.99,0:14:45.15,Default,,0000,0000,0000,,to register and capture patients who have been dianogised
Dialogue: 0,0:14:45.15,0:14:48.32,Default,,0000,0000,0000,,with acute infection of any of those three
Dialogue: 0,0:14:48.32,0:14:51.70,Default,,0000,0000,0000,,kinds: either infectious mononucleosis,
Dialogue: 0,0:14:51.70,0:14:54.94,Default,,0000,0000,0000,,Q fever, or the Ross River virus.
Dialogue: 0,0:14:54.94,0:14:58.89,Default,,0000,0000,0000,,And to their surprise, the people who,
Dialogue: 0,0:14:58.89,0:15:02.61,Default,,0000,0000,0000,,the patients who were followed over time prospectively--
Dialogue: 0,0:15:02.61,0:15:06.31,Default,,0000,0000,0000,,and this is the participants that remain
Dialogue: 0,0:15:06.31,0:15:09.90,Default,,0000,0000,0000,,having fatigue after the acute infection
Dialogue: 0,0:15:09.90,0:15:13.79,Default,,0000,0000,0000,,was diagnosed here--so in the, in the
Dialogue: 0,0:15:13.79,0:15:16.95,Default,,0000,0000,0000,,X axis . . . you can follow
Dialogue: 0,0:15:16.95,0:15:21.25,Default,,0000,0000,0000,,the time after acute infection, six months, twelve months after,
Dialogue: 0,0:15:21.25,0:15:25.15,Default,,0000,0000,0000,,and here in the . . . Y axis,
Dialogue: 0,0:15:25.15,0:15:29.60,Default,,0000,0000,0000,,you can see the patients who have fatigue, and you can see obviously patients
Dialogue: 0,0:15:29.60,0:15:30.46,Default,,0000,0000,0000,,getting better,
Dialogue: 0,0:15:30.46,0:15:34.15,Default,,0000,0000,0000,,and less having fatigue, but look at the proportion of cases
Dialogue: 0,0:15:34.15,0:15:39.54,Default,,0000,0000,0000,,that remain fatigued after 12 months. And they follow those patients later;
Dialogue: 0,0:15:39.54,0:15:42.76,Default,,0000,0000,0000,,Eleven percent of the patients
Dialogue: 0,0:15:42.76,0:15:46.68,Default,,0000,0000,0000,,develop chronic fatigue syndrome after these acute
Dialogue: 0,0:15:46.68,0:15:50.22,Default,,0000,0000,0000,,infections. Our patients were telling us that
Dialogue: 0,0:15:50.22,0:15:55.68,Default,,0000,0000,0000,,all along. And a study had to be done to prove that they were right.
Dialogue: 0,0:15:55.68,0:15:59.42,Default,,0000,0000,0000,,So it looks like at least in some cases of CFS
Dialogue: 0,0:15:59.42,0:16:03.15,Default,,0000,0000,0000,,there is an infectious insult at the beginning
Dialogue: 0,0:16:03.15,0:16:06.98,Default,,0000,0000,0000,,of the illness. Whether it's the infectious agent per se
Dialogue: 0,0:16:06.98,0:16:10.87,Default,,0000,0000,0000,,or the immune response against that agent, what (affects) it that much
Dialogue: 0,0:16:10.87,0:16:14.83,Default,,0000,0000,0000,,is unknown at this time. But hopefully one day we'll be able
Dialogue: 0,0:16:14.83,0:16:18.13,Default,,0000,0000,0000,,to solve that puzzle.
Dialogue: 0,0:16:18.13,0:16:21.51,Default,,0000,0000,0000,,This is another study done in the United States
Dialogue: 0,0:16:21.51,0:16:25.91,Default,,0000,0000,0000,,Similar idea. These are other lessons--these are kids.
Dialogue: 0,0:16:25.91,0:16:30.96,Default,,0000,0000,0000,,They have also been able to capture them at the time they had the acute infection
Dialogue: 0,0:16:30.96,0:16:34.51,Default,,0000,0000,0000,,and they find that about four percent after
Dialogue: 0,0:16:34.51,0:16:39.24,Default,,0000,0000,0000,,24 months--four percent--they have had but they have met the criteria
Dialogue: 0,0:16:39.24,0:16:42.77,Default,,0000,0000,0000,,of chronic fatigue syndrome. So clearly
Dialogue: 0,0:16:42.77,0:16:45.92,Default,,0000,0000,0000,,there is now proof
Dialogue: 0,0:16:45.92,0:16:50.60,Default,,0000,0000,0000,,that a patient can go into this mysterious disease, an illness,
Dialogue: 0,0:16:50.60,0:16:53.17,Default,,0000,0000,0000,,after they have had an acute infection. And
Dialogue: 0,0:16:53.17,0:16:56.51,Default,,0000,0000,0000,,please note that many of those infections
Dialogue: 0,0:16:56.51,0:17:00.22,Default,,0000,0000,0000,,also have what we call an asymptomatic phase. In other words,
Dialogue: 0,0:17:00.22,0:17:05.89,Default,,0000,0000,0000,,people, patients, can get those infections, and not have symptoms.
Dialogue: 0,0:17:05.89,0:17:08.21,Default,,0000,0000,0000,,What they have found is that in general,
Dialogue: 0,0:17:08.21,0:17:13.75,Default,,0000,0000,0000,,the more acute, severely ill the patients are, the more severe the disease is
Dialogue: 0,0:17:13.75,0:17:17.35,Default,,0000,0000,0000,,at the time when they have developed for the first time,
Dialogue: 0,0:17:17.35,0:17:23.54,Default,,0000,0000,0000,,the higher is the likelihood that they will go into chronic fatigue syndrome.
Dialogue: 0,0:17:23.54,0:17:28.60,Default,,0000,0000,0000,,So it is really important, and this is just to make one point--
Dialogue: 0,0:17:28.60,0:17:31.72,Default,,0000,0000,0000,,is that before we declare someone
Dialogue: 0,0:17:31.72,0:17:36.89,Default,,0000,0000,0000,,as having chronic fatigue syndrome, not only that six months have passed,
Dialogue: 0,0:17:36.89,0:17:40.62,Default,,0000,0000,0000,,for now--maybe in the future we will learn to identify
Dialogue: 0,0:17:40.62,0:17:43.79,Default,,0000,0000,0000,,those who will go into chronic fatigue syndrome very early so we can
Dialogue: 0,0:17:43.79,0:17:45.60,Default,,0000,0000,0000,,intervene early--but for now,
Dialogue: 0,0:17:45.60,0:17:48.71,Default,,0000,0000,0000,,the only way we can do it is by waiting. We don't have a way to
Dialogue: 0,0:17:48.71,0:17:49.49,Default,,0000,0000,0000,,distinguish those
Dialogue: 0,0:17:49.49,0:17:53.34,Default,,0000,0000,0000,,except that you can say, the more severe cases perhaps, you will have to pay more
Dialogue: 0,0:17:53.34,0:17:54.83,Default,,0000,0000,0000,,attention to them.
Dialogue: 0,0:17:54.83,0:17:58.90,Default,,0000,0000,0000,,But it's important that a very good internist, primary care provider,
Dialogue: 0,0:17:58.90,0:18:02.91,Default,,0000,0000,0000,,family medicine physician, does a comprehensive
Dialogue: 0,0:18:02.91,0:18:06.20,Default,,0000,0000,0000,,job looking for alternative explanations--
Dialogue: 0,0:18:06.20,0:18:09.13,Default,,0000,0000,0000,,psychiatric, psychologic, neurological--
Dialogue: 0,0:18:09.13,0:18:13.16,Default,,0000,0000,0000,,Because those can be relatively easily fixed. Be sure that we don't have a
Dialogue: 0,0:18:13.16,0:18:14.93,Default,,0000,0000,0000,,cancer that has not been diagnosed
Dialogue: 0,0:18:14.93,0:18:18.14,Default,,0000,0000,0000,,that is causing the fatigue, that is not a low thyroid,
Dialogue: 0,0:18:18.14,0:18:21.83,Default,,0000,0000,0000,,hormone production. Once that has been done,
Dialogue: 0,0:18:21.83,0:18:25.85,Default,,0000,0000,0000,,then we look at patients who have had the fatigue for more than six months
Dialogue: 0,0:18:25.85,0:18:30.23,Default,,0000,0000,0000,,and who have other symptoms. Unfortunately, there is no other way
Dialogue: 0,0:18:30.23,0:18:33.79,Default,,0000,0000,0000,,to do it. We don't have that shadow in the chest X-ray
Dialogue: 0,0:18:33.79,0:18:36.94,Default,,0000,0000,0000,,that (lets) you see pneumonia--yet. And
Dialogue: 0,0:18:36.94,0:18:40.26,Default,,0000,0000,0000,,We couple the fatigue that has lasted for six months
Dialogue: 0,0:18:40.26,0:18:45.27,Default,,0000,0000,0000,,plus four of any of this impaired concentration of the brain fog,
Dialogue: 0,0:18:45.27,0:18:48.30,Default,,0000,0000,0000,,sore throat, lymph nodes that are enlarged
Dialogue: 0,0:18:48.30,0:18:51.33,Default,,0000,0000,0000,,and painful, muscle pain, joint pain,
Dialogue: 0,0:18:51.33,0:18:56.27,Default,,0000,0000,0000,,new headaches, the unrefreshing sleep, and the post-exertional malaise.
Dialogue: 0,0:18:56.27,0:18:59.49,Default,,0000,0000,0000,,They are often with symptoms of depression.
Dialogue: 0,0:18:59.49,0:19:03.64,Default,,0000,0000,0000,,It's not that the depression causes chronic fatigue syndrome.
Dialogue: 0,0:19:03.64,0:19:07.30,Default,,0000,0000,0000,,It's that they are depressed because their lives have been been ruined,
Dialogue: 0,0:19:07.30,0:19:10.64,Default,,0000,0000,0000,,their life has been taken away, and they want that life back
Dialogue: 0,0:19:10.64,0:19:14.61,Default,,0000,0000,0000,,and they cannot have it. So it is unfortunate that
Dialogue: 0,0:19:14.61,0:19:17.88,Default,,0000,0000,0000,,we tend to see the periphery and not see how
Dialogue: 0,0:19:17.88,0:19:21.65,Default,,0000,0000,0000,,it evolved. Clinically,
Dialogue: 0,0:19:21.65,0:19:25.90,Default,,0000,0000,0000,,those patients, their fatigue is not
Dialogue: 0,0:19:25.90,0:19:28.35,Default,,0000,0000,0000,,alleviated by resting,
Dialogue: 0,0:19:28.35,0:19:32.44,Default,,0000,0000,0000,,and it's not the result of, because they are doing something
Dialogue: 0,0:19:32.44,0:19:36.63,Default,,0000,0000,0000,,something and they are not stopping. And in many cases,
Dialogue: 0,0:19:36.63,0:19:39.95,Default,,0000,0000,0000,,they lose their previous levels of occupational,
Dialogue: 0,0:19:39.95,0:19:43.47,Default,,0000,0000,0000,,educational, social, or personal activities.
Dialogue: 0,0:19:43.47,0:19:47.32,Default,,0000,0000,0000,,It's very important to note that many of them
Dialogue: 0,0:19:47.32,0:19:51.13,Default,,0000,0000,0000,,give you neurological symptoms
Dialogue: 0,0:19:51.13,0:19:54.32,Default,,0000,0000,0000,,that are hard to put in any category.
Dialogue: 0,0:19:54.32,0:19:58.58,Default,,0000,0000,0000,,At a meeting we were participating last night
Dialogue: 0,0:19:58.58,0:20:02.26,Default,,0000,0000,0000,,in, in the Washington area, we were sitting with
Dialogue: 0,0:20:02.26,0:20:06.87,Default,,0000,0000,0000,,neurologists and other physicians, and it became very clear
Dialogue: 0,0:20:06.87,0:20:10.49,Default,,0000,0000,0000,,that everybody's seeing the same thing.
Dialogue: 0,0:20:10.49,0:20:13.33,Default,,0000,0000,0000,,Not only the fatigue, not only the brain fog,
Dialogue: 0,0:20:13.33,0:20:18.10,Default,,0000,0000,0000,,but these funny tremors, twitches, that we call
Dialogue: 0,0:20:18.10,0:20:22.25,Default,,0000,0000,0000,,myoclonus fasciculations, things that normally will trigger the possibility of a
Dialogue: 0,0:20:22.25,0:20:23.17,Default,,0000,0000,0000,,neurlogical disease--
Dialogue: 0,0:20:23.17,0:20:27.23,Default,,0000,0000,0000,,these patients are having something in that area.
Dialogue: 0,0:20:27.23,0:20:31.39,Default,,0000,0000,0000,,so again, it seems like the disease is speaking to us
Dialogue: 0,0:20:31.39,0:20:35.45,Default,,0000,0000,0000,,in soft tones, and we're just not able to listen to it
Dialogue: 0,0:20:35.45,0:20:39.42,Default,,0000,0000,0000,,in a careful way. So it is a real disease,
Dialogue: 0,0:20:39.42,0:20:43.10,Default,,0000,0000,0000,,but it's an infectious, it is immunological,
Dialogue: 0,0:20:43.10,0:20:47.29,Default,,0000,0000,0000,,it's endocrine, neurological, cardiac, psychiatric,
Dialogue: 0,0:20:47.29,0:20:50.48,Default,,0000,0000,0000,,and so everybody seems to be looking at it from the wrong angle
Dialogue: 0,0:20:50.48,0:20:53.82,Default,,0000,0000,0000,,depending on what their area is. And
Dialogue: 0,0:20:53.82,0:20:57.35,Default,,0000,0000,0000,,hopefully one day will be able to see it three hundred and sixty
Dialogue: 0,0:20:57.35,0:21:01.72,Default,,0000,0000,0000,,to be able to comprehend better what is really is, what it's doing--
Dialogue: 0,0:21:01.72,0:21:05.69,Default,,0000,0000,0000,,the disease to these patients. And part of the problem
Dialogue: 0,0:21:05.69,0:21:10.15,Default,,0000,0000,0000,,is that, as I said, it's a constellation of systems, so it's a systemic
Dialogue: 0,0:21:10.15,0:21:15.42,Default,,0000,0000,0000,,challenge; it lasts! It can go on for decades.
Dialogue: 0,0:21:15.42,0:21:20.19,Default,,0000,0000,0000,,Is it possible that the CFS that one patient has is different than the other?
Dialogue: 0,0:21:20.19,0:21:21.81,Default,,0000,0000,0000,,Of course it could be possible.
Dialogue: 0,0:21:21.81,0:21:25.64,Default,,0000,0000,0000,,Like in pneumonia, you have this same shadow in two patients
Dialogue: 0,0:21:25.64,0:21:28.73,Default,,0000,0000,0000,,but it's caused by a different organism.
Dialogue: 0,0:21:28.73,0:21:32.49,Default,,0000,0000,0000,,So when you study CFS patients in the air, in general,
Dialogue: 0,0:21:32.49,0:21:36.38,Default,,0000,0000,0000,,it could be that you are studying different subgroups, and as you try to
Dialogue: 0,0:21:36.38,0:21:37.41,Default,,0000,0000,0000,,make it a one,
Dialogue: 0,0:21:37.41,0:21:41.16,Default,,0000,0000,0000,,your findings could be diluted for that reason.
Dialogue: 0,0:21:41.16,0:21:44.39,Default,,0000,0000,0000,,Also is very likely that the disease evolves.
Dialogue: 0,0:21:44.39,0:21:47.98,Default,,0000,0000,0000,,It changes. The patient who has illness for less than a year
Dialogue: 0,0:21:47.98,0:21:52.90,Default,,0000,0000,0000,,possibly will have a different kind of test, positive or negative,
Dialogue: 0,0:21:52.90,0:21:58.41,Default,,0000,0000,0000,,than someone who has had the disease for ten or twenty years.
Dialogue: 0,0:21:58.41,0:22:01.79,Default,,0000,0000,0000,,I have to bring up this study. Because in
Dialogue: 0,0:22:01.79,0:22:05.64,Default,,0000,0000,0000,,our infectious diseases community--so I told you that many patients tell you
Dialogue: 0,0:22:05.64,0:22:07.21,Default,,0000,0000,0000,,that there is an
Dialogue: 0,0:22:07.21,0:22:11.27,Default,,0000,0000,0000,,infection at the beginning of the illness--this is this study that has been
Dialogue: 0,0:22:11.27,0:22:16.94,Default,,0000,0000,0000,,cited as a study that shows that an anti-microbial intervention
Dialogue: 0,0:22:16.94,0:22:20.57,Default,,0000,0000,0000,,does not work for patients with chronic fatigue syndrome. It was a study that was
Dialogue: 0,0:22:20.57,0:22:22.13,Default,,0000,0000,0000,,published in the late 80s,
Dialogue: 0,0:22:22.13,0:22:27.94,Default,,0000,0000,0000,,where they took 27 patients. They had high titers against Epstein-Barr virus
Dialogue: 0,0:22:27.94,0:22:31.23,Default,,0000,0000,0000,,virus; they had been ill for at least seven years;
Dialogue: 0,0:22:31.23,0:22:34.61,Default,,0000,0000,0000,,and they gave those patients acyclovir for thirty
Dialogue: 0,0:22:34.61,0:22:37.91,Default,,0000,0000,0000,,days. So they got IV for seven days,
Dialogue: 0,0:22:37.91,0:22:41.25,Default,,0000,0000,0000,,and oral for thirty days. So no more
Dialogue: 0,0:45:56.81,0:46:00.73,Default,,0000,0000,0000,,similar mechanisms of damaging, or immunopathology,
Dialogue: 0,0:46:00.73,0:46:07.14,Default,,0000,0000,0000,,as also is known. The fact that the disease can be pressing for so many years
Dialogue: 0,0:46:07.14,0:46:10.60,Default,,0000,0000,0000,,is telling us something. It's whispering to us something.
Dialogue: 0,0:46:10.60,0:46:14.81,Default,,0000,0000,0000,,The fact that somebody could have a disease and not die of it
Dialogue: 0,0:46:14.81,0:46:19.11,Default,,0000,0000,0000,,for so long is giving us clues of the mechanism.
Dialogue: 0,0:46:19.11,0:46:22.34,Default,,0000,0000,0000,,If it's an infection that is doing it, it will mean
Dialogue: 0,0:46:22.34,0:46:26.39,Default,,0000,0000,0000,,that the infectious agent is capable of coming out of the hiding place
Dialogue: 0,0:46:26.39,0:46:31.40,Default,,0000,0000,0000,,at a low level. And the immune system attacks the infection,
Dialogue: 0,0:46:31.40,0:46:34.29,Default,,0000,0000,0000,,successfully puts that pathogen back in the hiding place,
Dialogue: 0,0:46:34.29,0:46:37.86,Default,,0000,0000,0000,,but it's the same immune response perhaps that is making the patients sick.
Dialogue: 0,0:46:37.86,0:46:41.67,Default,,0000,0000,0000,,Ad it just perpetuates the cycle. The patients tell us,
Dialogue: 0,0:46:41.67,0:46:45.45,Default,,0000,0000,0000,,they had been telling us for years,
Dialogue: 0,0:46:45.45,0:46:49.40,Default,,0000,0000,0000,,"I get this fluctuating level(s) of disease."
Dialogue: 0,0:46:49.40,0:46:53.24,Default,,0000,0000,0000,,And I think the immune system is acting as a double-edged sword;
Dialogue: 0,0:46:53.24,0:46:57.29,Default,,0000,0000,0000,,it's putting that organism back in (its) hiding place, but it's making the patient
Dialogue: 0,0:46:57.30,0:46:59.42,Default,,0000,0000,0000,,possibly sick.
Dialogue: 0,0:46:59.42,0:47:04.29,Default,,0000,0000,0000,,So the other observation is that most of the patients are women;
Dialogue: 0,0:47:04.29,0:47:07.35,Default,,0000,0000,0000,,most of them get better during pregnancy
Dialogue: 0,0:47:07.35,0:47:10.64,Default,,0000,0000,0000,,and most of them get worse after birth.
Dialogue: 0,0:47:10.64,0:47:13.67,Default,,0000,0000,0000,,Remember that patient that I mentioned to you: that she got the disease
Dialogue: 0,0:47:13.67,0:47:17.17,Default,,0000,0000,0000,,after the birth of her son. So that suggests
Dialogue: 0,0:47:17.17,0:47:21.54,Default,,0000,0000,0000,,an autoimmune disease, or an HLA association. Many diseases
Dialogue: 0,0:47:21.54,0:47:24.67,Default,,0000,0000,0000,,that have been found to be autoimmune had that exact
Dialogue: 0,0:47:24.67,0:47:27.95,Default,,0000,0000,0000,,same behavior. Lastly,
Dialogue: 0,0:47:27.95,0:47:32.29,Default,,0000,0000,0000,,I wanna comment to you, comment with you,
Dialogue: 0,0:47:32.30,0:47:35.87,Default,,0000,0000,0000,,the highly publicized study
Dialogue: 0,0:47:35.87,0:47:39.79,Default,,0000,0000,0000,,that came out of London where they
Dialogue: 0,0:47:39.79,0:47:42.92,Default,,0000,0000,0000,,did what is called adaptive pacing therapy,
Dialogue: 0,0:47:42.92,0:47:47.44,Default,,0000,0000,0000,,cognitive behavior therapy, or graded exercise therapy,
Dialogue: 0,0:47:47.44,0:47:50.96,Default,,0000,0000,0000,,or simply, a specialized medical care
Dialogue: 0,0:47:50.96,0:47:55.59,Default,,0000,0000,0000,,for patients with chronic fatigue syndrome. Adaptive pacing therapy
Dialogue: 0,0:47:55.59,0:47:58.55,Default,,0000,0000,0000,,is to tell the patient, "Do what you feel, but do not
Dialogue: 0,0:47:58.55,0:48:01.78,Default,,0000,0000,0000,,overdo it. Cognitive behavioral therapy
Dialogue: 0,0:48:01.78,0:48:05.27,Default,,0000,0000,0000,,is they work with a counselor, with a psychologist,
Dialogue: 0,0:48:05.27,0:48:10.47,Default,,0000,0000,0000,,to be sure that they overcome the fear of doing things, because they would crash,
Dialogue: 0,0:48:10.47,0:48:13.76,Default,,0000,0000,0000,,but they also get the same message: avoid the crashes.
Dialogue: 0,0:48:13.76,0:48:16.93,Default,,0000,0000,0000,,But this time they do it under cognitive
Dialogue: 0,0:48:16.93,0:48:21.40,Default,,0000,0000,0000,,behavioral intervention. Graded exercise therapy
Dialogue: 0,0:48:21.40,0:48:24.69,Default,,0000,0000,0000,,is they work with physical therapy individuals
Dialogue: 0,0:48:24.69,0:48:28.88,Default,,0000,0000,0000,,with the same goal--not to crash--but they do have some kind of
Dialogue: 0,0:48:28.88,0:48:32.44,Default,,0000,0000,0000,,schedule, graded exercise activity.
Dialogue: 0,0:48:32.44,0:48:36.10,Default,,0000,0000,0000,,in all the groups, either adaptive pacing therapy,
Dialogue: 0,0:48:36.10,0:48:40.20,Default,,0000,0000,0000,,cognitive behavior, graded exercise therapy, the main goal was to
Dialogue: 0,0:48:40.20,0:48:43.64,Default,,0000,0000,0000,,avoid the patient crashing, however the idea
Dialogue: 0,0:48:43.64,0:48:47.35,Default,,0000,0000,0000,,was to achieve that through these different means that I described to you.
Dialogue: 0,0:48:47.35,0:48:51.49,Default,,0000,0000,0000,,And a fourth group, a specialist medicare care--
Dialogue: 0,0:48:51.49,0:48:55.46,Default,,0000,0000,0000,,those patients simply got a good physician who new chronic fatigue syndrome
Dialogue: 0,0:48:55.46,0:48:58.50,Default,,0000,0000,0000,,but did nothing other than just provide general medical care.
Dialogue: 0,0:48:58.50,0:49:01.71,Default,,0000,0000,0000,,And this is what was found.
Dialogue: 0,0:49:01.71,0:49:05.81,Default,,0000,0000,0000,,So. The patients who got the adaptive pacing therapy
Dialogue: 0,0:49:05.81,0:49:09.88,Default,,0000,0000,0000,,just don't don't crash, trust your instincts--
Dialogue: 0,0:49:09.88,0:49:13.34,Default,,0000,0000,0000,,basically did not, so, in this score--
Dialogue: 0,0:49:13.34,0:49:16.87,Default,,0000,0000,0000,,in this score, going down is getting better.
Dialogue: 0,0:49:16.87,0:49:20.38,Default,,0000,0000,0000,,and really, these patients are really
Dialogue: 0,0:49:20.38,0:49:23.45,Default,,0000,0000,0000,,Sick. And in this case...
Dialogue: 0,0:49:23.45,0:49:27.79,Default,,0000,0000,0000,,In this case, it was clearly that the patients did not improve
Dialogue: 0,0:49:27.79,0:49:31.51,Default,,0000,0000,0000,,by simply telling them, "Trust your instincts."
Dialogue: 0,0:49:31.51,0:49:34.70,Default,,0000,0000,0000,,The patients who had the cognitive behavioral therapy,
Dialogue: 0,0:49:34.70,0:49:38.43,Default,,0000,0000,0000,,they actually improved their performance
Dialogue: 0,0:49:38.43,0:49:41.50,Default,,0000,0000,0000,,but they did not get cured from CFS.
Dialogue: 0,0:49:41.50,0:49:45.25,Default,,0000,0000,0000,,It is so sad that this study is being cited
Dialogue: 0,0:49:45.25,0:49:48.39,Default,,0000,0000,0000,,as "cognitive behavorial therapy is curing CFS."
Dialogue: 0,0:49:48.39,0:49:53.66,Default,,0000,0000,0000,,It's not true. The patients simply got better, and it's good that the patients got better,
Dialogue: 0,0:49:53.66,0:49:57.83,Default,,0000,0000,0000,,it was statistically significant, but they were far from going back to
Dialogue: 0,0:49:57.83,0:49:59.26,Default,,0000,0000,0000,,their normal levels.
Dialogue: 0,0:49:59.26,0:50:03.50,Default,,0000,0000,0000,,The same thing with the graded exercise therapy--they got better
Dialogue: 0,0:50:03.50,0:50:07.65,Default,,0000,0000,0000,,in a statistically significant manner, but they were far from being completely well.
Dialogue: 0,0:50:07.65,0:50:11.54,Default,,0000,0000,0000,,And the same thing, the same findings were for the physical
Dialogue: 0,0:50:11.54,0:50:15.94,Default,,0000,0000,0000,,function in that regard. So that the
Dialogue: 0,0:50:15.94,0:50:19.70,Default,,0000,0000,0000,,same authors of the papers said, "Our finding that
Dialogue: 0,0:50:19.70,0:50:23.89,Default,,0000,0000,0000,,(the) study treatments, like those, were only moderately
Dialogue: 0,0:50:23.89,0:50:26.53,Default,,0000,0000,0000,,effective," they are not saying that they are curing CFS,
Dialogue: 0,0:50:26.53,0:50:32.43,Default,,0000,0000,0000,,also suggests that researching to more effective treatments are needed
Dialogue: 0,0:50:32.43,0:50:37.57,Default,,0000,0000,0000,,and that the fact that behavioral intervention means that patients get better
Dialogue: 0,0:50:37.57,0:50:40.68,Default,,0000,0000,0000,,by no means means that this is psychological in nature.
Dialogue: 0,0:50:40.68,0:50:45.90,Default,,0000,0000,0000,,And I have to say that, because I had a very sad conversation with a family
Dialogue: 0,0:50:45.10,0:50:46.53,Default,,0000,0000,0000,,member of a patient who
Dialogue: 0,0:50:46.53,0:50:49.72,Default,,0000,0000,0000,,was doubting that our patient had the disease,
Dialogue: 0,0:50:49.72,0:50:53.20,Default,,0000,0000,0000,,and cited this study to say that now
Dialogue: 0,0:50:53.20,0:50:56.16,Default,,0000,0000,0000,,there was proof that "CFS was psychological"
Dialogue: 0,0:50:56.16,0:51:00.24,Default,,0000,0000,0000,,and that with psychological intervention, the patients "could get cured." This is far
Dialogue: 0,0:51:00.24,0:51:01.11,Default,,0000,0000,0000,,from truth,
Dialogue: 0,0:51:01.11,0:51:04.84,Default,,0000,0000,0000,,from the actual findings of the study. So I think we have
Dialogue: 0,0:51:04.84,0:51:08.82,Default,,0000,0000,0000,,lots of work to do; we need
Dialogue: 0,0:51:08.82,0:51:13.16,Default,,0000,0000,0000,,all the best minds at Stanford, and we are gathering the best minds at Stanford
Dialogue: 0,0:51:13.16,0:51:16.92,Default,,0000,0000,0000,,around the team. We need to find an objective,
Dialogue: 0,0:51:16.92,0:51:20.43,Default,,0000,0000,0000,,a form of saying, "yes,the patient has CFS";
Dialogue: 0,0:51:20.43,0:51:23.56,Default,,0000,0000,0000,,we need to find black levels--
Dialogue: 0,0:51:23.56,0:51:27.74,Default,,0000,0000,0000,,biomarkers that can identify the situation; we need to find ways to
Dialogue: 0,0:51:27.74,0:51:31.58,Default,,0000,0000,0000,,identify the subgroup, which is the pathogen behind--
Dialogue: 0,0:51:31.59,0:51:35.58,Default,,0000,0000,0000,,it's possible that there are patient with CFS that are not infectious as well.
Dialogue: 0,0:51:35.58,0:51:39.52,Default,,0000,0000,0000,,We need to find those agents and to the right trials.
Dialogue: 0,0:51:39.52,0:51:43.11,Default,,0000,0000,0000,,The attitude that was have taken at Stanford
Dialogue: 0,0:51:43.11,0:51:47.53,Default,,0000,0000,0000,,reminds me of what we want to do, is similar to what's found in this
Dialogue: 0,0:51:47.53,0:51:50.79,Default,,0000,0000,0000,,late 70s movie (The Wild Child) from Francois Truffaut:
Dialogue: 0,0:51:50.79,0:51:54.45,Default,,0000,0000,0000,,they have found this child in the forest of France.
Dialogue: 0,0:51:54.45,0:51:59.44,Default,,0000,0000,0000,,it was wild. Did not know how to speak, perhaps couldn't even hear.
Dialogue: 0,0:51:59.44,0:52:03.87,Default,,0000,0000,0000,,Basically it was a wild child with an entity of behavior
Dialogue: 0,0:52:03.87,0:52:07.33,Default,,0000,0000,0000,,that was not understood at all. However,
Dialogue: 0,0:52:07.33,0:52:11.69,Default,,0000,0000,0000,,when he was brought to a room where a physician who wanted to really
Dialogue: 0,0:52:11.69,0:52:14.89,Default,,0000,0000,0000,,help him and understand him, was trying to describe
Dialogue: 0,0:52:14.89,0:52:19.89,Default,,0000,0000,0000,,the length of his hair, teeth, numbers of scars in his skin,
Dialogue: 0,0:52:19.89,0:52:22.16,Default,,0000,0000,0000,,et cetera; made, uh,
Dialogue: 0,0:52:22.16,0:52:25.31,Default,,0000,0000,0000,,(an) observation. The kid
Dialogue: 0,0:52:25.31,0:52:28.42,Default,,0000,0000,0000,,did not react when a heavy noise
Dialogue: 0,0:52:28.42,0:52:31.73,Default,,0000,0000,0000,,was produced in the room. And he said, "Did you notice?"
Dialogue: 0,0:52:31.73,0:52:36.59,Default,,0000,0000,0000,,He didn't react to that loud noise. He's deaf.
Dialogue: 0,0:52:36.59,0:52:40.30,Default,,0000,0000,0000,,Then, another man who has seen the kid in the wild,
Dialogue: 0,0:52:40.30,0:52:44.20,Default,,0000,0000,0000,,from the village, says, "How can he be deaf
Dialogue: 0,0:52:44.20,0:52:47.43,Default,,0000,0000,0000,,when in the large I've seen him turn around
Dialogue: 0,0:52:47.43,0:52:50.77,Default,,0000,0000,0000,,when a nut was cracked behind him?"
Dialogue: 0,0:52:50.77,0:52:55.40,Default,,0000,0000,0000,,So the physician who is trying to make the observation says, "Write this:
Dialogue: 0,0:52:55.40,0:52:58.90,Default,,0000,0000,0000,,Indifferent to loud noises... whereas he turns around
Dialogue: 0,0:52:58.90,0:53:02.17,Default,,0000,0000,0000,,when a nut is cracked behind him." So
Dialogue: 0,0:53:02.17,0:53:06.34,Default,,0000,0000,0000,,it's really having a candid attitude towards this disease:
Dialogue: 0,0:53:06.34,0:53:10.20,Default,,0000,0000,0000,,observing what is there, what the disease is telling us, what I think that one day,
Dialogue: 0,0:53:10.20,0:53:14.79,Default,,0000,0000,0000,,hopefully, we'll be able to (use to) make a difference. And that would not be possible with a team.
Dialogue: 0,0:53:14.79,0:53:18.82,Default,,0000,0000,0000,,So we're very grateful to the Brennan and Taskey families for their support;
Dialogue: 0,0:53:18.82,0:53:23.36,Default,,0000,0000,0000,,Lindsey Merrihew, who is right here in the room--none of these things
Dialogue: 0,0:53:23.36,0:53:27.14,Default,,0000,0000,0000,,trust me, would have been possible without Lindsey. She's really the head
Dialogue: 0,0:53:27.14,0:53:31.29,Default,,0000,0000,0000,,and the mover and the doer in the team. And all the people
Dialogue: 0,0:53:31.30,0:53:35.46,Default,,0000,0000,0000,,below her: Jane Norris, Amber Ruiz, Dr. Marzie Zinn, who is also here,
Dialogue: 0,0:53:35.46,0:53:38.54,Default,,0000,0000,0000,,Dr. Marcie Zinn has given the challenge of
Dialogue: 0,0:53:38.54,0:53:42.50,Default,,0000,0000,0000,,helping us to understand the brain fog and how to measure.
Dialogue: 0,0:53:42.50,0:53:45.78,Default,,0000,0000,0000,,So none of those things would have happened without the intervention
Dialogue: 0,0:53:45.78,0:53:51.91,Default,,0000,0000,0000,,of this great team. Thank you.
Dialogue: 0,0:53:51.91,0:53:55.42,Default,,0000,0000,0000,,[Question asked] Now the doctor has asked the question that,
Dialogue: 0,0:53:55.42,0:53:58.47,Default,,0000,0000,0000,,you know, obviously, this,
Dialogue: 0,0:53:58.47,0:54:01.49,Default,,0000,0000,0000,,uh, we have a problem.
Dialogue: 0,0:54:01.49,0:54:04.61,Default,,0000,0000,0000,,And it's the waiting time. Lindsey, what is
Dialogue: 0,0:54:04.61,0:54:08.43,Default,,0000,0000,0000,,the waiting time now?
Dialogue: 0,0:54:08.43,0:54:13.44,Default,,0000,0000,0000,,Two to three years. So we are trying to desperately try to,
Dialogue: 0,0:54:13.44,0:54:16.61,Default,,0000,0000,0000,,um, to to cope with the high demand.
Dialogue: 0,0:54:16.61,0:54:20.44,Default,,0000,0000,0000,,There is a physician in the area, in El Camino Hospital,
Dialogue: 0,0:54:20.44,0:54:23.98,Default,,0000,0000,0000,,[Dr. Andreas Kogelnik]. So [K-
Dialogue: 0,0:54:23.98,0:54:27.69,Default,,0000,0000,0000,,0-G-E-L-N-I-K.]
Dialogue: 0,0:54:27.69,0:54:30.24,Default,,0000,0000,0000,,And Lindsey and I can give you his contact information,
Dialogue: 0,0:54:30.24,0:54:33.97,Default,,0000,0000,0000,,who is seeing now patients with chronic fatigue syndrome, with an approach
Dialogue: 0,0:54:33.97,0:54:37.65,Default,,0000,0000,0000,,similar to ours. So that has helped us, to
Dialogue: 0,0:54:37.65,0:54:40.90,Default,,0000,0000,0000,,have patients being seen by him.
Dialogue: 0,0:54:40.90,0:54:44.60,Default,,0000,0000,0000,,Thank you, yeah, you are correct, it's right here, his name:
Dialogue: 0,0:54:44.60,0:54:48.23,Default,,0000,0000,0000,,Kogelnik, actually. K-O-G. Kogelnik.
Dialogue: 0,0:54:48.23,0:54:52.19,Default,,0000,0000,0000,,Um, so, but... you know, our hope,
Dialogue: 0,0:54:52.19,0:54:55.79,Default,,0000,0000,0000,,our goal, in addition to one day
Dialogue: 0,0:54:55.79,0:54:59.22,Default,,0000,0000,0000,,be able to understand the disease and erradicate it,
Dialogue: 0,0:54:59.22,0:55:02.87,Default,,0000,0000,0000,,in addition to that dream, is that we need to desperately bring
Dialogue: 0,0:55:02.87,0:55:06.32,Default,,0000,0000,0000,,education our colleagues, medical students,
Dialogue: 0,0:55:06.32,0:55:09.72,Default,,0000,0000,0000,,fellows residents, so they can perpetuate that
Dialogue: 0,0:55:09.72,0:55:12.73,Default,,0000,0000,0000,,model. [Question asked] So the question was made that,
Dialogue: 0,0:55:12.73,0:55:17.31,Default,,0000,0000,0000,,what was the dose that was used in the study that we cited in the late 80s,
Dialogue: 0,0:55:17.31,0:55:20.85,Default,,0000,0000,0000,,where patients with chronic fatigue syndrome were treated with acyclovir,
Dialogue: 0,0:55:20.85,0:55:23.86,Default,,0000,0000,0000,,and the answer is that they used the standard dose
Dialogue: 0,0:55:23.86,0:55:26.93,Default,,0000,0000,0000,,for that time, that were not high doses.
Dialogue: 0,0:55:26.93,0:55:30.71,Default,,0000,0000,0000,,And what is striking is they used only five weeks,
Dialogue: 0,0:55:30.71,0:55:34.40,Default,,0000,0000,0000,,yet they went out and made that as the Bible,
Dialogue: 0,0:55:34.40,0:55:38.33,Default,,0000,0000,0000,,that antiviral intervention does not work for CFS.
Dialogue: 0,0:55:38.33,0:55:41.67,Default,,0000,0000,0000,,[Question asked] The question is, if valgancyclovir is available.
Dialogue: 0,0:55:41.67,0:55:46.15,Default,,0000,0000,0000,,Yes. It is available; it's approved by the FDA;
Dialogue: 0,0:55:46.15,0:55:49.47,Default,,0000,0000,0000,,when we did the trial, we went to the FDA,
Dialogue: 0,0:55:49.47,0:55:53.59,Default,,0000,0000,0000,,got the permission at the FDA to use it for this other indication.
Dialogue: 0,0:55:53.59,0:55:56.63,Default,,0000,0000,0000,,It needs medical supervision--
Dialogue: 0,0:55:56.63,0:55:59.95,Default,,0000,0000,0000,,there is a safety issue with the blood cells, but
Dialogue: 0,0:55:59.95,0:56:03.53,Default,,0000,0000,0000,,if you have proper supervision, that usually is not an issue.
Dialogue: 0,0:56:03.53,0:56:06.99,Default,,0000,0000,0000,,There is a question mark on the long-term use about,
Dialogue: 0,0:56:06.99,0:56:11.53,Default,,0000,0000,0000,,in animals, it can cause cancer, we do not know if that happens in humans, but it
Dialogue: 0,0:56:11.53,0:56:12.90,Default,,0000,0000,0000,,has to always be
Dialogue: 0,0:56:12.90,0:56:16.89,Default,,0000,0000,0000,,discussed with your provider in that regard.
Dialogue: 0,0:56:16.89,0:56:19.34,Default,,0000,0000,0000,,[Question asked] So the question is, like--could people, knowing
Dialogue: 0,0:56:19.34,0:56:24.57,Default,,0000,0000,0000,,that some of these infections can do that devastation, can you do something
Dialogue: 0,0:56:24.57,0:56:28.36,Default,,0000,0000,0000,,in a prophylactic manner, to prevent that [you're] going to that
Dialogue: 0,0:56:28.36,0:56:32.39,Default,,0000,0000,0000,,unhealthy cascade. Not that we know of.
Dialogue: 0,0:56:32.39,0:56:37.85,Default,,0000,0000,0000,,If we were to write something in a magazine, in a journal, we
Dialogue: 0,0:56:37.85,0:56:41.62,Default,,0000,0000,0000,,would have to say "nothing is known." If we were having a
Dialogue: 0,0:56:41.62,0:56:45.91,Default,,0000,0000,0000,,coffee table conversation, then you could say some things like,
Dialogue: 0,0:56:45.91,0:56:50.15,Default,,0000,0000,0000,,"Please don't--you know, there are many patients who, when they are sick, they try
Dialogue: 0,0:56:50.15,0:56:53.90,Default,,0000,0000,0000,,to go to the extreme, they try to to back to work naturally.
Dialogue: 0,0:56:53.90,0:56:57.74,Default,,0000,0000,0000,,I would suggest that common-sense measures of rest when they have the
Dialogue: 0,0:56:57.74,0:56:58.76,Default,,0000,0000,0000,,acute illness
Dialogue: 0,0:56:58.76,0:57:03.86,Default,,0000,0000,0000,,be exaggerated, in fact--that they take more time to rest.
Dialogue: 0,0:57:03.86,0:57:07.79,Default,,0000,0000,0000,,The other thing that we have found, but this is totally anecdotal, is some of the
Dialogue: 0,0:57:07.79,0:57:11.71,Default,,0000,0000,0000,,kids of our colleagues at Stanford who have come down with the acute
Dialogue: 0,0:57:11.71,0:57:15.16,Default,,0000,0000,0000,,infections, and we have measured the [levels] and they had been positive;
Dialogue: 0,0:57:15.16,0:57:18.30,Default,,0000,0000,0000,,we had given the antibiotic right there
Dialogue: 0,0:57:18.30,0:57:21.78,Default,,0000,0000,0000,,and it seems like--but it's very anecdotal--that they
Dialogue: 0,0:57:21.78,0:57:25.33,Default,,0000,0000,0000,,recover. But, anecdotal. [Question asked] The question is about
Dialogue: 0,0:57:25.33,0:57:28.98,Default,,0000,0000,0000,,the levels of HSV-1, or HSV-2,
Dialogue: 0,0:57:28.98,0:57:33.73,Default,,0000,0000,0000,,and even with HSV-6--do they travel travel together?
Dialogue: 0,0:57:33.73,0:57:37.78,Default,,0000,0000,0000,,Preliminarily, it seems like the EBV and HSV-6,
Dialogue: 0,0:57:37.78,0:57:42.57,Default,,0000,0000,0000,,they travel together in a surgroup of patients. We thought that that surgroup was gonna be
Dialogue: 0,0:57:42.57,0:57:46.42,Default,,0000,0000,0000,,large, the one that we allegedly found,
Dialogue: 0,0:57:46.42,0:57:49.55,Default,,0000,0000,0000,,but he seems like it's a small surgroup.
Dialogue: 0,0:57:49.55,0:57:54.22,Default,,0000,0000,0000,,It's rare to have a patient with HSV-1 and HSV-6.
Dialogue: 0,0:57:54.22,0:57:58.24,Default,,0000,0000,0000,,We don't know why yet. Or HSV-2 and HSV-6.
Dialogue: 0,0:57:58.24,0:58:01.49,Default,,0000,0000,0000,,It's not not uncommon to have HSV-1 and HSV-2.
Dialogue: 0,0:58:01.49,0:58:05.12,Default,,0000,0000,0000,,And the levels of antibodies seems to be high.
Dialogue: 0,0:58:05.12,0:58:09.15,Default,,0000,0000,0000,,We have had a surgroup of patients with
Dialogue: 0,0:58:09.15,0:58:12.26,Default,,0000,0000,0000,,HSV-2, genital, HSV-1,
Dialogue: 0,0:58:12.26,0:58:16.89,Default,,0000,0000,0000,,oral blisters, and we have intervened them with acyclovir, which is a much
Dialogue: 0,0:58:16.89,0:58:19.18,Default,,0000,0000,0000,,simpler drug to give.
Dialogue: 0,0:58:19.18,0:58:22.42,Default,,0000,0000,0000,,And after a year, year-and-a-half intervention,
Dialogue: 0,0:58:22.42,0:58:26.24,Default,,0000,0000,0000,,It seems that we see these recoveries that are truly dramatic.
Dialogue: 0,0:58:26.24,0:58:30.62,Default,,0000,0000,0000,,In a surgroup of patients. Ideally we should do
Dialogue: 0,0:58:30.62,0:58:34.72,Default,,0000,0000,0000,,a randomized trial; I'm trying to see how we can come up with the funds
Dialogue: 0,0:58:34.72,0:58:38.64,Default,,0000,0000,0000,,to do the right study, similar to the other, to prove that that's the case.
Dialogue: 0,0:58:38.64,0:58:43.50,Default,,0000,0000,0000,,[Questions asked] Two questions: one is, if the drugs that I show you, the one that we have used,
Dialogue: 0,0:58:43.50,0:58:48.20,Default,,0000,0000,0000,,if they're anti-retroviral, meaning anti-HIV drugs,
Dialogue: 0,0:58:48.20,0:58:52.14,Default,,0000,0000,0000,,what I have shown you--emphasize that--what I have shown you
Dialogue: 0,0:58:52.14,0:58:55.54,Default,,0000,0000,0000,,they are not anti-retrovirals; they are not anti-HIV.
Dialogue: 0,0:58:55.54,0:58:58.71,Default,,0000,0000,0000,,And the second question: if there,
Dialogue: 0,0:58:58.71,0:59:01.92,Default,,0000,0000,0000,,if there is like a stem cell base for the disease,
Dialogue: 0,0:59:01.92,0:59:06.34,Default,,0000,0000,0000,,because the virus can get into, some other viruses can get into the genetic
Dialogue: 0,0:59:06.34,0:59:09.71,Default,,0000,0000,0000,,code, and the answer is, "not as far as we know."
Dialogue: 0,0:59:09.71,0:59:13.42,Default,,0000,0000,0000,,It seems like it has to do more with the germ line cells.
Dialogue: 0,0:59:13.42,0:59:16.46,Default,,0000,0000,0000,,The very early cells, but not stem cell
Dialogue: 0,0:59:16.46,0:59:21.53,Default,,0000,0000,0000,,based. And as far as we know it's not stem-cell based.
Dialogue: 0,0:59:21.53,0:59:24.96,Default,,0000,0000,0000,,But there is very litle known about that part.
Dialogue: 0,0:59:24.96,0:59:29.14,Default,,0000,0000,0000,,[Question asked] So the question is about: if long-term,
Dialogue: 0,0:59:29.14,0:59:33.29,Default,,0000,0000,0000,,careful, safe, thoughtful,
Dialogue: 0,0:59:33.30,0:59:37.62,Default,,0000,0000,0000,,antiviral or anti-microbial intervention can result in the improvement of
Dialogue: 0,0:59:37.62,0:59:43.89,Default,,0000,0000,0000,,chronic diseases like this. So that's the model that we are operating. So the--
Dialogue: 0,0:59:43.89,0:59:46.89,Default,,0000,0000,0000,,if you see what we're doing behind, it suggests that
Dialogue: 0,0:59:46.89,0:59:50.24,Default,,0000,0000,0000,,infection at low levels can do a lot of stuff. That's
Dialogue: 0,0:59:50.24,0:59:53.26,Default,,0000,0000,0000,,the model that we are using. And then that's--
Dialogue: 0,0:59:53.26,0:59:56.41,Default,,0000,0000,0000,,So pressing that for long periods of time should improve. So
Dialogue: 0,0:59:56.41,1:00:00.98,Default,,0000,0000,0000,,the question suggests the possibility that what about if we did that,
Dialogue: 0,1:00:00.99,1:00:05.64,Default,,0000,0000,0000,,for the long term effects of varicella-zoster virus, or shingles virus
Dialogue: 0,1:00:05.64,1:00:09.88,Default,,0000,0000,0000,,in terms of pain, this is well known, that it can do this problem.
Dialogue: 0,1:00:09.88,1:00:13.67,Default,,0000,0000,0000,,Preliminary--but again, just two small patients, but
Dialogue: 0,1:00:13.67,1:00:18.52,Default,,0000,0000,0000,,highly gratifying. We have patients who had come to us for five years of
Dialogue: 0,1:00:18.52,1:00:21.72,Default,,0000,0000,0000,,pain, that is clearly what we call the
Dialogue: 0,1:00:21.72,1:00:24.91,Default,,0000,0000,0000,,"herpes without rash."
Dialogue: 0,1:00:24.91,1:00:28.47,Default,,0000,0000,0000,,and this woman, after like a year and a half of acyclovir, is
Dialogue: 0,1:00:28.47,1:00:29.43,Default,,0000,0000,0000,,back to like,
Dialogue: 0,1:00:29.43,1:00:32.93,Default,,0000,0000,0000,,smile, bubbly personality, normal--
Dialogue: 0,1:00:32.93,1:00:36.69,Default,,0000,0000,0000,,those are anecdotal. The point is,
Dialogue: 0,1:00:36.69,1:00:41.79,Default,,0000,0000,0000,,I think it calls for that. It calls for patients who have the shingles
Dialogue: 0,1:00:41.79,1:00:44.49,Default,,0000,0000,0000,,to be randomized to long term antiviral suppression
Dialogue: 0,1:00:44.49,1:00:49.60,Default,,0000,0000,0000,,versus not to show whether it has an impact on the post-herpetic pain
Dialogue: 0,1:00:49.60,1:00:52.69,Default,,0000,0000,0000,,or neuralgia. Very good point. [Question asked] What about
Dialogue: 0,1:00:52.69,1:00:57.30,Default,,0000,0000,0000,,families who share the same environment, who could have the same markers. And,
Dialogue: 0,1:00:57.30,1:01:01.60,Default,,0000,0000,0000,,the right study has not been done, though we do have,
Dialogue: 0,1:01:01.60,1:01:06.91,Default,,0000,0000,0000,,I think it's--correct me if I'm wrong, Lindsey, but we have four families now,
Dialogue: 0,1:01:06.91,1:01:11.49,Default,,0000,0000,0000,,four families, in whom they share the markers,
Dialogue: 0,1:01:11.49,1:01:14.40,Default,,0000,0000,0000,,and not all of them express the disease. So it looks like
Dialogue: 0,1:01:14.40,1:01:18.91,Default,,0000,0000,0000,,something else is needed. So we have four families who had that behavior.
Dialogue: 0,1:01:18.91,1:01:23.20,Default,,0000,0000,0000,,So it seems that you need more than the infection to express disease.
Dialogue: 0,1:01:23.20,1:01:26.50,Default,,0000,0000,0000,,[Question asked] The question is, are we testing patients for XMRV.
Dialogue: 0,1:01:26.50,1:01:30.99,Default,,0000,0000,0000,,So we asked the Microbiology Department at Stanford
Dialogue: 0,1:01:30.99,1:01:33.58,Default,,0000,0000,0000,,and they are stepping up to the plate. They are
Dialogue: 0,1:01:33.58,1:01:38.11,Default,,0000,0000,0000,,setting up the test. We need to find a few more resources, but they are,
Dialogue: 0,1:01:38.11,1:01:41.42,Default,,0000,0000,0000,,they are doing it. And some of our patients are doing it
Dialogue: 0,1:01:41.42,1:01:44.78,Default,,0000,0000,0000,,through the other--it is a commercial laboratory that now,
Dialogue: 0,1:01:44.78,1:01:48.17,Default,,0000,0000,0000,,that's it. Good question. [Question asked] The question is are there any
Dialogue: 0,1:01:48.17,1:01:52.43,Default,,0000,0000,0000,,clinical trials? There are clinical trials of (a) different nature and kind.
Dialogue: 0,1:01:52.43,1:01:55.85,Default,,0000,0000,0000,,There is, for example, a clinical trial with interferon.
Dialogue: 0,1:01:55.85,1:01:59.65,Default,,0000,0000,0000,,Interferon is an antiviral, and it's given to patients with the hope that they
Dialogue: 0,1:01:59.65,1:02:03.84,Default,,0000,0000,0000,,will recover. And that's (they are) the Nevada group.
Dialogue: 0,1:02:03.84,1:02:07.49,Default,,0000,0000,0000,,There are others in Europe that obviously our patients will not have access to.
Dialogue: 0,1:02:07.49,1:02:11.43,Default,,0000,0000,0000,,Our idea, our dream, is to have
Dialogue: 0,1:02:11.43,1:02:14.88,Default,,0000,0000,0000,,a whole group at Stanford that would just do
Dialogue: 0,1:02:14.88,1:02:18.44,Default,,0000,0000,0000,,clinical trials for these kinds of patients. But that is an
Dialogue: 0,1:02:18.44,1:02:22.84,Default,,0000,0000,0000,,infrastructure that is relatively large. And unfortunatel, the NIH
Dialogue: 0,1:02:22.84,1:02:26.42,Default,,0000,0000,0000,,does not give much money for clinical trials, and that's
Dialogue: 0,1:02:26.42,1:02:30.90,Default,,0000,0000,0000,,unfortunate. [Question asked] So the question is about the role of alternative treatments.
Dialogue: 0,1:02:30.90,1:02:35.18,Default,,0000,0000,0000,,What (I've) shown you, the role of cognitive-behavioral intervention,
Dialogue: 0,1:02:35.18,1:02:39.52,Default,,0000,0000,0000,,the, sort of like, physical therapy intervention,
Dialogue: 0,1:02:39.52,1:02:42.80,Default,,0000,0000,0000,,clearly points to the fact that there are
Dialogue: 0,1:02:42.80,1:02:46.92,Default,,0000,0000,0000,,things that patients can do that could be thoughtful,
Dialogue: 0,1:02:46.92,1:02:50.62,Default,,0000,0000,0000,,not expensive, that could work for the patient.
Dialogue: 0,1:02:50.62,1:02:53.90,Default,,0000,0000,0000,,So there are things that the patients can do, and they can
Dialogue: 0,1:02:53.90,1:02:57.24,Default,,0000,0000,0000,,be helped. The answer is yes. And they are in the alternative
Dialogue: 0,1:02:57.24,1:03:02.29,Default,,0000,0000,0000,,[Question asked] The relationship--is there any any relationship between fatigue,
Dialogue: 0,1:03:02.29,1:03:05.56,Default,,0000,0000,0000,,that is temporal, versus chronic fatigue,
Dialogue: 0,1:03:05.56,1:03:08.58,Default,,0000,0000,0000,,because as it's pointed (out), some interventions
Dialogue: 0,1:03:08.58,1:03:11.63,Default,,0000,0000,0000,,from a good cup of coffee, or provigil,
Dialogue: 0,1:03:11.63,1:03:14.96,Default,,0000,0000,0000,,or ritaline, make patients with short-term fatigue
Dialogue: 0,1:03:14.96,1:03:18.95,Default,,0000,0000,0000,,better. There is a subset of patients with chronic fatigue
Dialogue: 0,1:03:18.95,1:03:22.30,Default,,0000,0000,0000,,syndrome that experience that temporal improvement with those same
Dialogue: 0,1:03:22.30,1:03:23.37,Default,,0000,0000,0000,,interventions,
Dialogue: 0,1:03:23.37,1:03:27.39,Default,,0000,0000,0000,,but they are not lasting. All of them tell us,
Dialogue: 0,1:03:27.39,1:03:30.68,Default,,0000,0000,0000,,when they use those interventions, they basically lead them to
Dialogue: 0,1:03:30.68,1:03:33.79,Default,,0000,0000,0000,,overdo it and crash. And it's very
Dialogue: 0,1:03:33.79,1:03:38.00,Default,,0000,0000,0000,,short-term--the effect is very short-term.
Dialogue: 0,1:03:38.00,1:03:42.30,Default,,0000,0000,0000,,We don't know if the same thing that causes fatigue
Dialogue: 0,1:03:42.30,1:03:46.10,Default,,0000,0000,0000,,are the same mechanisms that cause chronic fatigue. Our suspicion is that there are
Dialogue: 0,1:03:46.10,1:03:50.51,Default,,0000,0000,0000,,two different things doing it. Because the patient who had the chronic fatigue,
Dialogue: 0,1:03:50.51,1:03:53.53,Default,,0000,0000,0000,,more than the fatigue, they have all these other other symptoms.
Dialogue: 0,1:03:53.53,1:03:56.91,Default,,0000,0000,0000,,Many of them describe--it's like having a bad flu
Dialogue: 0,1:03:56.91,1:04:00.62,Default,,0000,0000,0000,,going on for years, or for decades. [Question asked] So the question is, are we
Dialogue: 0,1:04:00.62,1:04:04.20,Default,,0000,0000,0000,,seeing family members of patients with chronic fatigue syndrome
Dialogue: 0,1:04:04.20,1:04:07.86,Default,,0000,0000,0000,,higher incidents of autoimmune problems?
Dialogue: 0,1:04:07.86,1:04:10.98,Default,,0000,0000,0000,,The answer is yes. It seems like they tell us stories
Dialogue: 0,1:04:10.98,1:04:14.90,Default,,0000,0000,0000,,about patients having a higher--the patients tend to have more
Dialogue: 0,1:04:14.90,1:04:18.41,Default,,0000,0000,0000,,thyroid problem(s) of the autoimmune type. Um,
Dialogue: 0,1:04:18.41,1:04:22.29,Default,,0000,0000,0000,,we are starting to pay attention to vitiligo, which is
Dialogue: 0,1:04:22.29,1:04:26.20,Default,,0000,0000,0000,,whitening of the skin when the melanocytes are attacked by
Dialogue: 0,1:04:26.20,1:04:29.68,Default,,0000,0000,0000,,antibodies. So it seems like there is another
Dialogue: 0,1:04:29.68,1:04:33.35,Default,,0000,0000,0000,,clue towardas autoimmunity there.
Dialogue: 0,1:04:33.35,1:04:36.48,Default,,0000,0000,0000,,[Question asked] Are the HSV-6 titers easily done and the answer is
Dialogue: 0,1:04:36.48,1:04:40.38,Default,,0000,0000,0000,,yes. We don't have any commercial tie with
Dialogue: 0,1:04:40.38,1:04:44.00,Default,,0000,0000,0000,,anybody. But there is a lot that we suggest
Dialogue: 0,1:04:44.00,1:04:47.13,Default,,0000,0000,0000,,where the HSV-6 titers can be done, and its
Dialogue: 0,1:04:47.13,1:04:50.61,Default,,0000,0000,0000,,focus, only because we are familiar with their numbers,
Dialogue: 0,1:04:50.61,1:04:55.47,Default,,0000,0000,0000,,we have learned to to know what is low, what is medium, what is high.
Dialogue: 0,1:04:55.47,1:04:59.24,Default,,0000,0000,0000,,But we have no commercial connection with them, but focus laboratory
Dialogue: 0,1:04:59.24,1:05:02.72,Default,,0000,0000,0000,,appears to be reliable in giving us titers that we can
Dialogue: 0,1:05:02.72,1:05:07.19,Default,,0000,0000,0000,,sort of like, act upon. [Question] So it's been said that there are,
Dialogue: 0,1:05:07.19,1:05:11.30,Default,,0000,0000,0000,,there is a support group based in Mountain View,
Dialogue: 0,1:05:11.30,1:05:14.39,Default,,0000,0000,0000,,that there is a sign up sheet outside here,
Dialogue: 0,1:05:14.39,1:05:17.45,Default,,0000,0000,0000,,and it's important to share
Dialogue: 0,1:05:17.45,1:05:20.62,Default,,0000,0000,0000,,these experiences. It's important to
Dialogue: 0,1:05:20.62,1:05:25.18,Default,,0000,0000,0000,,bring this together, and as it was shown in that study in The Lancet,
Dialogue: 0,1:05:25.18,1:05:29.38,Default,,0000,0000,0000,,it sounds like having interventional, behavioral intervention,
Dialogue: 0,1:05:29.38,1:05:31.16,Default,,0000,0000,0000,,cognitive intervention,
Dialogue: 0,1:05:31.16,1:05:34.28,Default,,0000,0000,0000,,it seems like it helps. And it's very important that,
Dialogue: 0,1:05:34.28,1:05:38.86,Default,,0000,0000,0000,,that--do not let people talking to--that study proves
Dialogue: 0,1:05:38.86,1:05:42.13,Default,,0000,0000,0000,,that CFS can be cured, or that that study proves
Dialogue: 0,1:05:42.13,1:05:45.85,Default,,0000,0000,0000,,that it's psychological. In addition to what you said, they excluded patients
Dialogue: 0,1:05:45.85,1:05:50.29,Default,,0000,0000,0000,,who couldn't come to the hospital, so the sickest patients didn't make it into the trial.
Dialogue: 0,1:05:50.29,1:05:53.93,Default,,0000,0000,0000,,Though their scores were really low in terms of performance,
Dialogue: 0,1:05:53.93,1:05:57.61,Default,,0000,0000,0000,,so in addition to the selection issues,
Dialogue: 0,1:05:57.61,1:06:01.47,Default,,0000,0000,0000,,the study does not prove a psychological (connection) and does not prove
Dialogue: 0,1:06:01.47,1:06:04.63,Default,,0000,0000,0000,,that that's the way to cure patients. [Question asked] Is there any
Dialogue: 0,1:06:04.63,1:06:08.24,Default,,0000,0000,0000,,there any neurological or phenotyping difference, phenotype difference, between
Dialogue: 0,1:06:08.24,1:06:10.71,Default,,0000,0000,0000,,those patients who come down with an
Dialogue: 0,1:06:10.71,1:06:14.38,Default,,0000,0000,0000,,illness, with CFS, after they have an acute illness,
Dialogue: 0,1:06:14.38,1:06:18.37,Default,,0000,0000,0000,,particularly an infectious illness, versus those who have their onset
Dialogue: 0,1:06:18.37,1:06:22.62,Default,,0000,0000,0000,,not associated with an infection? Not that we know of,
Dialogue: 0,1:06:22.62,1:06:26.39,Default,,0000,0000,0000,,but we are separating them by when we take the history,
Dialogue: 0,1:06:26.39,1:06:29.67,Default,,0000,0000,0000,,and in the analysis that we are doing, looking for pathogens, or for immune
Dialogue: 0,1:06:29.67,1:06:31.23,Default,,0000,0000,0000,,response abnormalities--
Dialogue: 0,1:06:31.23,1:06:34.92,Default,,0000,0000,0000,,we are taking that into account. So hopefully we'll be able
Dialogue: 0,1:06:34.92,1:06:39.88,Default,,0000,0000,0000,,to answer--no, I think he's asking like, independent of (whether) it's a woman or man,
Dialogue: 0,1:06:39.88,1:06:43.75,Default,,0000,0000,0000,,is there a difference between those who started the illness with an infection,
Dialogue: 0,1:06:43.75,1:06:47.70,Default,,0000,0000,0000,,versus those do do not start the disease with an infection.
Dialogue: 0,1:06:47.70,1:06:51.18,Default,,0000,0000,0000,,It is well-known that 75 percent of the patients with
Dialogue: 0,1:06:51.18,1:06:55.78,Default,,0000,0000,0000,,CFS, 75 percent are women. Now
Dialogue: 0,1:06:55.79,1:06:59.52,Default,,0000,0000,0000,,if we were to take women alone, there are women who started their CFS
Dialogue: 0,1:06:59.52,1:07:04.85,Default,,0000,0000,0000,,without an infection. And so the sample size on the second study was very small.
Dialogue: 0,1:07:04.85,1:07:08.12,Default,,0000,0000,0000,,But women can start their CFS with not an infectious illness.
Dialogue: 0,1:07:08.12,1:07:11.46,Default,,0000,0000,0000,,And the question is, are there differences between those who,
Dialogue: 0,1:07:11.46,1:07:14.67,Default,,0000,0000,0000,,who tell you the precise time where they started,
Dialogue: 0,1:07:14.67,1:07:18.90,Default,,0000,0000,0000,,versus those who who did not. So the question is, when the patients get a
Dialogue: 0,1:07:18.90,1:07:20.10,Default,,0000,0000,0000,,viral illness,
Dialogue: 0,1:07:20.10,1:07:23.34,Default,,0000,0000,0000,,some of them go into CFS and some do not.
Dialogue: 0,1:07:23.34,1:07:28.20,Default,,0000,0000,0000,,The most common factor that has been associated in the study
Dialogue: 0,1:07:28.20,1:07:31.40,Default,,0000,0000,0000,,(that) have looked at this, is severity of the illness.
Dialogue: 0,1:07:31.40,1:07:34.80,Default,,0000,0000,0000,,So the more severe the illness, the more likely they are
Dialogue: 0,1:07:34.80,1:07:37.94,Default,,0000,0000,0000,,to go into having the illness--
Dialogue: 0,1:07:37.94,1:07:42.13,Default,,0000,0000,0000,,as far as it's known. [Question asked] Well thanks to the support of one of our
Dialogue: 0,1:07:42.13,1:07:45.48,Default,,0000,0000,0000,,patients, we started, Lindsey actually,
Dialogue: 0,1:07:45.48,1:07:48.92,Default,,0000,0000,0000,,and Mrs. Kaski are really the people who
Dialogue: 0,1:07:48.92,1:07:52.49,Default,,0000,0000,0000,,we have to thank. We started a website
Dialogue: 0,1:07:52.49,1:07:56.60,Default,,0000,0000,0000,,where, at Stanford, and, Lindsey, the name of the website please?
Dialogue: 0,1:07:56.60,1:07:59.72,Default,,0000,0000,0000,,so http://chronicfatigue.stanford.edu/
Dialogue: 0,1:07:59.72,1:08:03.58,Default,,0000,0000,0000,,...and there we are starting to put up as many resources as
Dialogue: 0,1:08:03.58,1:08:06.95,Default,,0000,0000,0000,,we can, everything that we have learned about,
Dialogue: 0,1:08:06.95,1:08:10.87,Default,,0000,0000,0000,,of the disease for the past few years. [Question asked] We know that some patients
Dialogue: 0,1:08:10.87,1:08:14.63,Default,,0000,0000,0000,,crash. Have we measured the amount of dividers
Dialogue: 0,1:08:14.63,1:08:17.90,Default,,0000,0000,0000,,or cytokines during those crash periods?
Dialogue: 0,1:08:17.90,1:08:22.54,Default,,0000,0000,0000,,so we attempted to do that in the study that I showed you, where we found differences.
Dialogue: 0,1:08:22.54,1:08:26.35,Default,,0000,0000,0000,,But the numbers are so small, and we didn't see any differences.
Dialogue: 0,1:08:26.35,1:08:29.97,Default,,0000,0000,0000,,But I think it's a matter of just doing that.
Dialogue: 0,1:08:29.97,1:08:34.80,Default,,0000,0000,0000,,The tough part of studying that is, how can you justify
Dialogue: 0,1:08:34.80,1:08:39.89,Default,,0000,0000,0000,,to ask a patient, "Take this drug. It's gonna make you sick,
Dialogue: 0,1:08:39.89,1:08:42.62,Default,,0000,0000,0000,,and we'll study you." So ethically it's hard. [Question asked]
Dialogue: 0,1:08:42.62,1:08:46.80,Default,,0000,0000,0000,,These viruses are latent. They are there for the life of the patient.
Dialogue: 0,1:08:46.80,1:08:50.30,Default,,0000,0000,0000,,So we are not suggesting that with these long-term anti-
Dialogue: 0,1:08:50.30,1:08:53.51,Default,,0000,0000,0000,,viral interventions we are eradicating the
Dialogue: 0,1:08:53.51,1:08:57.55,Default,,0000,0000,0000,,virus out of the body, we are trying to, if our theory is correct,
Dialogue: 0,1:08:57.55,1:09:01.82,Default,,0000,0000,0000,,bring them under control. So--and you are absolutely correct--
Dialogue: 0,1:09:01.82,1:09:04.97,Default,,0000,0000,0000,,I think that part of the reason it has eluded
Dialogue: 0,1:09:04.97,1:09:09.80,Default,,0000,0000,0000,,our understanding of the disease, is that they are at very low levels
Dialogue: 0,1:09:09.80,1:09:12.94,Default,,0000,0000,0000,,even when they are causing disease. That is correct.
Dialogue: 0,1:09:12.94,1:09:16.11,Default,,0000,0000,0000,,[Question asked] It's more common in women--have we seen mothers
Dialogue: 0,1:09:16.11,1:09:20.12,Default,,0000,0000,0000,,giving it to their daughters? So we have,
Dialogue: 0,1:09:20.12,1:09:24.60,Default,,0000,0000,0000,,sadly, a few cases where that has been the case.
Dialogue: 0,1:09:24.60,1:09:28.24,Default,,0000,0000,0000,,And mostly related to that situation, where dividers
Dialogue: 0,1:09:28.24,1:09:32.45,Default,,0000,0000,0000,,integrate into the chromosome, the human herpes--so herpes viruses
Dialogue: 0,1:09:32.45,1:09:35.69,Default,,0000,0000,0000,,normally do not integrate into the chromosome
Dialogue: 0,1:09:35.69,1:09:39.67,Default,,0000,0000,0000,,like HIV does, like the XMRV does,
Dialogue: 0,1:09:39.67,1:09:44.12,Default,,0000,0000,0000,,herpes viruses are known for not doing that. But the HSV-6 has found a
Dialogue: 0,1:09:44.12,1:09:48.84,Default,,0000,0000,0000,,clever way to do it, and they--those patients
Dialogue: 0,1:09:48.84,1:09:53.42,Default,,0000,0000,0000,,seem to pass their virus, particularly mothers to daughters,
Dialogue: 0,1:09:53.42,1:09:56.93,Default,,0000,0000,0000,,through their chromosomes. So there are situations,
Dialogue: 0,1:09:56.93,1:10:00.30,Default,,0000,0000,0000,,but that's the exception, luckily. But it's--
Dialogue: 0,1:10:00.30,1:10:04.50,Default,,0000,0000,0000,,these are the tougher (cases) to deal with. [Question asked] So the question is very clever. So the same
Dialogue: 0,1:10:04.50,1:10:05.93,Default,,0000,0000,0000,,way we can prevent--
Dialogue: 0,1:10:05.93,1:10:11.91,Default,,0000,0000,0000,,and that is true--we can prevent HIV-infected mothers from giving HIV to their babies.
Dialogue: 0,1:10:11.91,1:10:15.76,Default,,0000,0000,0000,,Can something like that be done for mothers with CFS?
Dialogue: 0,1:10:15.76,1:10:19.80,Default,,0000,0000,0000,,Unfortunately, the drugs
Dialogue: 0,1:10:19.80,1:10:22.54,Default,,0000,0000,0000,,can damage the baby, theratogenic, so that
Dialogue: 0,1:10:22.54,1:10:25.89,Default,,0000,0000,0000,,makes it very hard to justify doing it with our
Dialogue: 0,1:10:25.89,1:10:30.65,Default,,0000,0000,0000,,proper study setting. So that makes it very hard. But
Dialogue: 0,1:10:30.65,1:10:33.67,Default,,0000,0000,0000,,I was at a meeting last night in
Dialogue: 0,1:10:33.67,1:10:36.71,Default,,0000,0000,0000,,in Washington, with a patient who has
Dialogue: 0,1:10:36.71,1:10:40.73,Default,,0000,0000,0000,,her daughter with it, and she once--her daughter,
Dialogue: 0,1:10:40.73,1:10:44.92,Default,,0000,0000,0000,,through the treatment that we did, went back to complete normality after years of
Dialogue: 0,1:10:44.92,1:10:48.94,Default,,0000,0000,0000,,having the illness. And they are now desperate that she got married,
Dialogue: 0,1:10:48.94,1:10:52.99,Default,,0000,0000,0000,,newly married, and they want to have a baby, et cetera. How do you do it?
Dialogue: 0,1:10:52.10,1:10:55.55,Default,,0000,0000,0000,,At this point there is nothing we can do. Unfortunately.
Dialogue: 0,1:10:55.55,1:10:59.14,Default,,0000,0000,0000,,[Question asked] Two points: one is, do we have ways to
Dialogue: 0,1:10:59.14,1:11:03.47,Default,,0000,0000,0000,,standardize what we are doing, so other physicians can have easy access
Dialogue: 0,1:11:03.47,1:11:08.38,Default,,0000,0000,0000,,to doing those steps, and following the--the answer is yes.
Dialogue: 0,1:11:08.38,1:11:11.66,Default,,0000,0000,0000,,And we talk to other physicians who are--
Dialogue: 0,1:11:11.66,1:11:15.23,Default,,0000,0000,0000,,So many physicians had doing this now, nationwide,
Dialogue: 0,1:11:15.23,1:11:19.59,Default,,0000,0000,0000,,and sometimes the patients, after they have been on the waiting list, they come to us
Dialogue: 0,1:11:19.60,1:11:22.19,Default,,0000,0000,0000,,after they have been treated. And we're just fine-tuning the issues.
Dialogue: 0,1:11:22.19,1:11:25.86,Default,,0000,0000,0000,,so we do have standard formats
Dialogue: 0,1:11:25.86,1:11:29.16,Default,,0000,0000,0000,,that we give out to physicians.
Dialogue: 0,1:11:29.16,1:11:32.51,Default,,0000,0000,0000,,And I think that I can say that, because
Dialogue: 0,1:11:32.51,1:11:37.19,Default,,0000,0000,0000,,it's legal, and medically viable, we can actually put those protocols in
Dialogue: 0,1:11:37.19,1:11:38.63,Default,,0000,0000,0000,,the website as well,
Dialogue: 0,1:11:38.63,1:11:42.11,Default,,0000,0000,0000,,because none of the drugs that we personally,
Dialogue: 0,1:11:42.11,1:11:45.71,Default,,0000,0000,0000,,we at the clinic are using, none of them are experimental.
Dialogue: 0,1:11:45.71,1:11:49.70,Default,,0000,0000,0000,,They are all FDA-approved. And as you know,
Dialogue: 0,1:11:49.70,1:11:54.85,Default,,0000,0000,0000,,any physician has the freedom to use any drug that is approved by the FDA for any
Dialogue: 0,1:11:54.85,1:11:56.89,Default,,0000,0000,0000,,other indication that is reasonable.
Dialogue: 0,1:11:56.89,1:12:01.18,Default,,0000,0000,0000,,so that is not illegal. And we put those protocols
Dialogue: 0,1:12:01.18,1:12:04.28,Default,,0000,0000,0000,,in the website so physicians can download them.
Dialogue: 0,1:12:04.28,1:12:07.73,Default,,0000,0000,0000,,But in the meantime, they can call us, and we give them out, and we talk to the
Dialogue: 0,1:12:07.73,1:12:11.61,Default,,0000,0000,0000,,physicians as well. Regarding the equilibrium--
Dialogue: 0,1:12:11.61,1:12:14.81,Default,,0000,0000,0000,,That is a drug
Dialogue: 0,1:12:14.81,1:12:18.11,Default,,0000,0000,0000,,that comes from China, so we don't prescribe it because we we cannot
Dialogue: 0,1:12:18.11,1:12:23.26,Default,,0000,0000,0000,,guarantee what--how many milligrams and the purity of the drug,
Dialogue: 0,1:12:23.26,1:12:27.32,Default,,0000,0000,0000,,but if the suspicion is that other kinds of viruses called
Dialogue: 0,1:12:27.32,1:12:31.92,Default,,0000,0000,0000,,entero- or echoviruses are behind it, we highly suggest the patient to
Dialogue: 0,1:12:31.92,1:12:35.28,Default,,0000,0000,0000,,consult Dr. Chia in Southern California, because he
Dialogue: 0,1:12:35.28,1:12:39.12,Default,,0000,0000,0000,,really is the one with the expertise, and that's his baby,
Dialogue: 0,1:12:39.12,1:12:42.52,Default,,0000,0000,0000,,and I totally trust that what he has found is valid.
Dialogue: 0,1:12:42.52,1:12:46.49,Default,,0000,0000,0000,,But we don't have the expertise with the administration of the drug.
Dialogue: 0,1:12:46.49,1:12:47.50,Default,,0000,0000,0000,,Thank you. [Applause]