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00:00:00Good evening everyone and thank you for joining us for Episode 4 of Season 2 with Dr. Forrest
00:00:11Tennant of our DocTalks.
00:00:13We're so happy to have everyone with us this evening.
00:00:16Tonight a surprise guest and I will let Dr. Tennant introduce her.
00:00:21You go right ahead and take it away.
00:00:22Thank you so much.
00:00:23Thank you, Jamie.
00:00:24It's great to see all of you here and we'll have an exciting hour, I think.
00:00:30Sitting with me is someone I think probably known to a lot of you who are regulars and
00:00:35who have been in the intractable pain advocacy field for some time.
00:00:42And so I'm going to have a couple of announcements first before I get to interviewing her, but
00:00:47let me just talk to you here a little bit about Kristen Ogden.
00:00:53Kristen is an advisor and a consultant to the Tennant Foundation for many years.
00:01:00Certainly I've used her and overused her as much as I can for advice.
00:01:05And she's here tonight with us because her advocacy over many years, and we'll get to
00:01:11that, is paying off.
00:01:14It might surprise you to know that in the country, in the last three months, we've had
00:01:21some advances from the government and all around and getting people some help that they
00:01:29need, particularly those people who need opioids and need benzodiazepines, need stimulants.
00:01:35Those who have a severe intractable pain, we're getting some breaks.
00:01:39And we've had a couple of recent ones.
00:01:42And Kristen's been a big part of that.
00:01:44We're going to talk about that in a few minutes.
00:01:47We're not where we want to be yet, but we're making a great headway.
00:01:51First, I have a couple of announcements that I want to make.
00:01:57This has been a good month for me.
00:01:58I finished two big projects that I want to tell you about.
00:02:03The first is I finished my last biography.
00:02:07Some 15 years ago, I decided to see if I couldn't find some famous people who had taken opioids
00:02:15and who had severe pain and to write about them.
00:02:18Well, I looked under a lot of rocks and did a lot of studying, and I found four people
00:02:24who are famous who took opioids for severe pain problems, and I've written about them.
00:02:30And I have finally finished my fourth book.
00:02:34I feel like I just got out of jail because it took a lot of effort and research to write
00:02:39these books.
00:02:40Now, I wrote about four people.
00:02:42The first one I wrote about was Howard Hughes.
00:02:45The second one I wrote about was Elvis Presley.
00:02:48The third one was John F. Kennedy, and I've just finished my fourth and final biography,
00:02:54and that's on Doc Holliday.
00:02:56That book is now on Amazon, in fact, along with the other three.
00:03:01I highly recommend those to anybody who's got a severe pain problem.
00:03:07Doc Holliday is out, and I must confess that I had probably more fun writing this book
00:03:14than the others in the sense that I was born in Dodge City, Kansas, and I actually have
00:03:20some dissimilarities to one of the gunfighters, Luke Short, who was there and Tombstone and
00:03:28other places.
00:03:29But at any rate, the book is very historic, and Doc Holliday has a medical saga that is
00:03:38not appreciated.
00:03:39Everybody knows about Doc Holliday, and everybody knows about Tombstone, and everybody knows
00:03:43about the Wild West, but what they don't know is that he has a medical story that's rather
00:03:48amazing, and he did take opioids, which extended his life, and you'll find it a very interesting
00:03:55story.
00:03:55It's now on Amazon, along with the other three.
00:03:58So that's one announcement.
00:04:00The second one I have, which to me is a major kind of wrap-up, if you will.
00:04:10Some of you may have gotten our latest Tenet Foundation Bulletin, which has fundamentally
00:04:18coined a name that I think is essential for people to understand what they have, where
00:04:26their pain came from, what they need for treatment, and that is the name Spinal Canal Inflammatory
00:04:35Disorder, or for simple, SCIDs.
00:04:39So we're going to hit the SCIDs for a couple of minutes.
00:04:42Now, what's important for you to know is that what I'm about to tell you has come out of
00:04:50our research.
00:04:51I want to not necessarily make a disclaimer, but I guess you could call it that, and that
00:04:56is the research that we are coming up with is not published, has not been peer-reviewed,
00:05:04it's not even known to the medical profession, and lastly, I'm a little shocked at what we
00:05:10have learned.
00:05:12And I am going to talk about it, write about it, and ask everybody not to accept what I'm
00:05:18saying necessarily, or what I'm finding, but to do their own research and do their
00:05:24own confirmation studies.
00:05:26Now, let me give you a little history on SCIDs.
00:05:32When I closed my clinic and started just doing full research full-time, I wanted to study
00:05:38adhesive arachnoiditis.
00:05:40Now, the reason was real simple.
00:05:43About 10 years ago, adhesive arachnoiditis started becoming the number one reason you
00:05:49ended up in a pain clinic and needed high-dose opioids.
00:05:53It was as simple as that.
00:05:55In other words, there were some other conditions, RSD or CRPS, head trauma, and a few other
00:06:03conditions that gave you a need to have high-dose opioid therapy, but adhesive arachnoiditis
00:06:09was not the number one reason.
00:06:11But adhesive arachnoiditis was number one by far, so I said, somebody better take some
00:06:16time, put some time, money, and effort into it and study it.
00:06:20And incidentally, Kristen or a lot of some of you watching have actually been part of
00:06:24our studies and part of our input, and I'm very grateful for that.
00:06:29So one of the first things we had to do was start collecting MRIs, and we've collected
00:06:34MRIs on people with adhesive arachnoiditis from something like 48 countries.
00:06:39And some of those countries are enemies of the United States, such as Russia and China,
00:06:44Iran, and we're on the medical side, so we'll try to help anybody anywhere, if you will.
00:06:51But we started seeing something in those MRIs besides adhesive arachnoiditis.
00:06:57The number one thing we kept seeing was that adhesive arachnoiditis was not the only spinal
00:07:05canal problem they had.
00:07:07That was a shock.
00:07:10We went into this thinking that adhesive arachnoiditis was kind of a singular, rare disease that
00:07:17you got from severe trauma or an infection like Lyme, or you got electrocuted, or you
00:07:23had a severe autoimmune disease like scleroderma, and that wasn't what we found.
00:07:30What we found was everybody had multiple slipped discs.
00:07:35They had Tarlov cysts.
00:07:37They had ligaflamma hypertrophy.
00:07:39They had cauda equina inflammation.
00:07:44And in other words, and a lot of them had already, they were 18, 20 years of age and
00:07:49already had arthritis of the vertebra.
00:07:52And so we started seeing people with adhesive arachnoiditis didn't have this disease in
00:07:59isolation.
00:08:01They had any number of these other conditions.
00:08:04And so our studies have come to one hard conclusion.
00:08:11And that is adhesive arachnoiditis is part of other syndromes, if you will, or diseases
00:08:20of the spinal canal.
00:08:22In other words, there is a group of overlapping and interconnected spinal canal inflammatory
00:08:31conditions.
00:08:33And therefore, the proper name is spinal canal inflammatory disorder.
00:08:40Now I'm going to read off the ones that we have identified.
00:08:45And a lot of you will relate to this, if not all of you, because you don't just have one
00:08:51of these, you might have several.
00:08:53Now here are the spinal canal inflammatory conditions that may be, all of them may be
00:09:00a part of the SCIDs or maybe two or three of them, depends on the individual.
00:09:07And first off, you've got degenerating protruding discs, ligamentum flavum hypertrophy,
00:09:13epidural fibrosis, cauda equina inflammation, adhesive arachnoiditis, spinal canal covering
00:09:21inflammation, known as chronic meningitis, or maybe even non-adhesive arachnoiditis,
00:09:26tarlof cysts, and vertebral arthritis.
00:09:30In other words, we've got about seven or eight or nine different conditions that are
00:09:36being given a diagnosis, but in almost everybody we've studied, they really have spinal canal
00:09:44inflammatory disorder.
00:09:46Now let me explain a little bit more about this before I interview our guests.
00:09:52Here's a glass.
00:09:54Now this glass kind of looks, think of a canal here for a moment.
00:10:01When inflammation gets started inside that canal, it is just like rheumatoid arthritis
00:10:08of the day.
00:10:10Somehow the inflammation gets started and we don't know how to stop it.
00:10:16We can control it.
00:10:17We can suppress it.
00:10:19But you get inflammation inside this closed compartment.
00:10:23That's the key.
00:10:24A closed compartment.
00:10:26A spinal canal is closed.
00:10:28It doesn't have entryways to speak of except microscopic blood vessels.
00:10:33And so it's a closed compartment.
00:10:36And once you get inflammation started in one of the tissues, if you, let's say you start
00:10:41the inflammation down in the sacral arachnoid, that'll give you a turn-off sense.
00:10:49Then that inflammation may spread on up to the cauda equina, or maybe to the disc, maybe
00:10:54to the vertebra, maybe to the ligamentum flavum, which is the ligament around the canal.
00:11:01In other words, if you have back pain that has not responded to the normal treatments,
00:11:08you may have skin.
00:11:10And so SCIDs is really the appropriate diagnosis or the appropriate label.
00:11:18Now, a couple of things about SCIDs.
00:11:21As we did our MRI studies, we not only found that people had terrible pain and they had
00:11:29multiple conditions.
00:11:31The other thing that we found is that people would have terrible pain.
00:11:35They couldn't get help.
00:11:36They couldn't get a diagnosis, but they did not have.
00:11:39Adhesive arachnoiditis.
00:11:42And so any of these spinal canal conditions can give you the pain.
00:11:49It can give you the disability and it can cause a lot of impairments, but make no mistake
00:11:54about it.
00:11:55The one condition you don't want is adhesive arachnoiditis.
00:12:00That's the big baby.
00:12:02That's the big one.
00:12:03You don't want it.
00:12:05And so part of the reason why we want to come up with this label is to get people identified
00:12:12and diagnosed so they can get some early help and perhaps prevent adhesive arachnoiditis.
00:12:18But again, I welcome anybody to debate this issue, talk about it, but it is time.
00:12:26As far as we're concerned, we're going to use the term spinal canal inflammatory disorder.
00:12:33As far as I'm concerned, it's here to stay.
00:12:35That's what it should be labeled.
00:12:37And people should have that diagnosis along with herniated disc, conical inflammation,
00:12:44turn off cysts or adhesive arachnoiditis.
00:12:47You need both diagnoses and it's time that that gets recognized.
00:12:52Now, you'll be seeing those bulletins put out from our foundation about the laboratory
00:12:57tests that go along with this, the treatment, the challenges.
00:13:01In other words, as far as I'm concerned, we have a new chapter out here.
00:13:06It's called SCIDS.
00:13:07And that's where we're at.
00:13:09And after hundreds of MRIs and thinking about this for some years now and putting it together,
00:13:15I believe that's what the medical profession and patients and families need to know about.
00:13:20Let's hit the SCIDS.
00:13:21All right, let's move on to the next thing about this program.
00:13:26I gave Kristen a little introduction a while ago.
00:13:31I met her and her husband, I've got to guess, 20 years ago, 30 years ago.
00:13:382010, that's only 13 years.
00:13:40Okay, whatever it was, but I'm going to get into interviewing her.
00:13:46And I think you'll find it very interesting.
00:13:48And we've got some good news for those people who are struggling to get their opioids and
00:13:54their benzodiazepines and getting treatment.
00:13:57We're making headway, folks.
00:13:58So let's get started.
00:13:59Kristen, first off, how did you get involved with intractable pain
00:14:08and the journey that brings you here?
00:14:09Well, my husband, unfortunately, is a patient who has intractable pain.
00:14:14And we had not been successful in getting good care for him, effective treatment in our home
00:14:19state.
00:14:20And so he had been doing a lot of research.
00:14:22And we found out about this doctor named Forrest Tennant and said, well, if he'll take us,
00:14:26then we want to go see him.
00:14:27And that was just the beginning of me learning about many facets of the illness that I had
00:14:32not previously understood.
00:14:35You actually got me into working in advocacy, sir, because you encouraged me to do that.
00:14:39I remember showing you a letter I'd written to the FDA and wanted to know what you thought.
00:14:43And you said, well, we need an advocacy group.
00:14:46Let's put a signup sheet out in the lobby here.
00:14:48So that's what we did.
00:14:49Now, tell us a little bit about your professional background.
00:14:54I remember spotting you.
00:14:56And I realized you're, frankly, you're high intelligence, your education.
00:15:02I didn't know much about your background at the time.
00:15:04But I was very pleasantly surprised to find out what you did professionally.
00:15:09Tell us a little bit about your professional background.
00:15:12And don't be shy.
00:15:13Give us the facts.
00:15:14Okay.
00:15:16I graduated from college at the College of William and Mary.
00:15:21I went to work for the federal government.
00:15:23And I didn't have a specific career goal in mind.
00:15:26In part, that was just following sort of in my parents' footsteps, because I hadn't really
00:15:29been able to pick a specific profession that I wanted to do.
00:15:34And I thought, well, this would be a good job to get started, has good benefits and
00:15:37all that.
00:15:38But I had the good fortune to actually fall into some good opportunities.
00:15:43And I say good, because they gave me the opportunity to develop the ability to do public
00:15:48speaking and to write.
00:15:50I was in human resources and strategic planning.
00:15:53And they enabled me to learn a lot of useful skills that I have ended up being able to
00:15:58apply in my advocacy work and other areas of my life.
00:16:02So you call the Office of Personnel Management.
00:16:04And after a few years, in order to get in a place where I could have better promotion
00:16:09opportunities, I moved over to the Department of Defense.
00:16:12And I worked for the agency that runs grocery stores on military bases all over the country
00:16:16and all over overseas.
00:16:19And as a military kid myself growing up, it sort of hit me that those grocery stores on
00:16:25the military bases make a huge difference for military families.
00:16:29If you move to a foreign country and you don't know how to speak the language, you're certainly
00:16:32not very comfortable going shopping for groceries for dinner.
00:16:35And so it's a valuable service.
00:16:37And I thought, well, I can get into this.
00:16:39I can enjoy and feel good about working for this agency.
00:16:43Kelly, that's one of the reasons I kind of really fell in love with your abilities,
00:16:48because I knew what she did.
00:16:49I'm an old Army surgeon.
00:16:51And I knew about what the commissary did.
00:16:53Hardly anybody else around did.
00:16:55But I sure did.
00:16:56And having served overseas in the Army, you appreciated that branch of the Department
00:17:02of Defense.
00:17:02So that was one of the reasons that attracted me to her, to be honest about it, was I've
00:17:08got somebody spotted that we can really use.
00:17:10We need her.
00:17:13We recruited her just like that.
00:17:14We drafted her just like the military.
00:17:19OK.
00:17:21So you work there.
00:17:23So go on.
00:17:24How did, I know that you came into this problem because of your husband's tragedy.
00:17:31How did that happen?
00:17:33Tell us about his journey.
00:17:35How did he develop his incredible fame for them?
00:17:40And how did you get involved?
00:17:42Well, his intractable pain problem was just not taken seriously by a lot of doctors that
00:17:46we saw in the beginning.
00:17:48He's had pain since he was a child.
00:17:50And his parents certainly took him to doctors.
00:17:52But they could never really figure out anything wrong with him.
00:17:55He told me not too long ago that he remembers crying himself to sleep at the age of six
00:18:00because his legs ached so badly.
00:18:03It would seem like just a huge variety of symptoms and little differences that he had.
00:18:11That didn't seem to make sense until I started learning about intractable pain syndrome.
00:18:17He had wonderful parents.
00:18:18They certainly took good care of him.
00:18:19But now, in later years, we have realized we think that he had a genetically transmitted
00:18:26disease, Ehlers-Danlos, and that accounts for a lot of the symptoms he experienced.
00:18:31And turns out that his mother had a lot of the same symptoms and her mother, his grandmother.
00:18:36So there's a pretty clear family link there going back even as far as his great, great,
00:18:43great grandmother, who was Native American.
00:18:46We have a photograph of her and Dr. Tennant looked at it and said, I think this lady had
00:18:51a connective tissue disorder.
00:18:53And so, you know, it's been amazing the various bits of knowledge that he has given us through
00:18:59his experience in dealing with Lewis.
00:19:01And the good news is that my husband, Lewis, is doing very well nowadays.
00:19:05Good.
00:19:06So I'm a happy camper.
00:19:09And how I got involved is I just can't give up on people.
00:19:13I can't give up when somebody tells me we don't know what's wrong.
00:19:16I, for many, many years, I started going to every appointment with him because I realized
00:19:20that to have a spouse accompany someone with mysterious pain helped their credibility with
00:19:28the doctors.
00:19:28And so I've been involved for a very long time.
00:19:32I don't remember exactly what year, but a very long time.
00:19:35More like that 20 or 30 years you're talking about.
00:19:40One of the things that I want to talk about in her case and Lewis, her husband's case,
00:19:47is the fact that he has a very rare Ehlers-Danlos syndrome.
00:19:57Just one of the things that we're going to get into in a couple of minutes.
00:20:01It hasn't even been 10 years ago that medical boards in this country and other government
00:20:07agencies rejected the diagnosis of Ehlers-Danlos syndrome, totally rejected it.
00:20:15And I can tell you that my experience with the California Medical Board was that they
00:20:24did not, never heard of Ehlers-Danlos syndrome, never heard of these things.
00:20:29And then we had a woman who had EDS and got pregnant.
00:20:37And during her pregnancy, she ruptured her uterus, plucked it low, and that was the case
00:20:46that educated my state's medical board about EDS.
00:20:51There's still great misunderstanding about EDS, and we're going to talk a lot about that
00:20:56on the show, because in our studies, at least 30%, if not 50% of people who develop
00:21:07adhesive arachnoiditis have an EDS syndrome.
00:21:11It's that high.
00:21:13Now, there's about 12 or 13 different kinds, and the common kind is hypermobility, and
00:21:19that's pretty easy to diagnose.
00:21:21Dr. Brighton came up with a scale, which is used, a brilliant move incidentally, but
00:21:27if you have one of those rare EDS conditions, like her husband, you can really get put to
00:21:33the back of the bus.
00:21:35Nobody understands that, and we don't have good tests for it.
00:21:38Okay, I wasn't certain what he had either until I saw his grandmother's picture, and
00:21:44I could tell that hands and face, you could tell it was all passed down.
00:21:50Elvis Presley was in the same situation, incidentally, but anyway, that's a little bit
00:21:55about how we came about.
00:21:57Does anybody now doubt about your husband's diagnosis, or that's been pretty accepted
00:22:01as you've traveled around?
00:22:02It has been accepted.
00:22:03Ever since you made that diagnosis, no one has questioned it at all, and it's very good
00:22:10to know this, because it also explains that my husband has a family history of aneurysms,
00:22:17which are obviously potentially deadly, on both sides of his family, his father and his
00:22:22mother's side of his family.
00:22:23So, EDS explains a whole lot of things that were a mystery to us for many years.
00:22:30Yeah, again, to just take your husband as a case, to develop severe pain conditions,
00:22:41genetics has a lot more to do with it than we ever thought, even a few years ago.
00:22:48Just to make sure that people watching out here know that we're not forgetting you folks
00:22:54that have got Marfan syndrome, and rheumatoid spondylitis, and perhaps some of the other
00:23:02rarer genetic conditions.
00:23:06They're big time, and so, as time is going on, part of the evaluation and workup and
00:23:15diagnosis of intractable pain patients really needs to include a genetic evaluation.
00:23:21And so, that's going to be part of our missionary zeal here, is to advocate for that
00:23:29for that evaluation.
00:23:32Right now, our foundation is following, I believe, three or four children under age
00:23:3812 who have adhesive arachnoid items.
00:23:42Now, your husband, actually, his symptoms started off in a child, didn't he?
00:23:45Yes, about age six.
00:23:47About age six, uh-huh.
00:23:49And so, we think that's important to do.
00:23:53You just, this idea that everybody, if you don't know the diagnosis, just call it
00:24:00psychological, that attitude needs to go.
00:24:04Yes.
00:24:04You know, too many pediatricians, and doctors, and nurses like to call a child who is six
00:24:10and who vomits just psychological, and it may be something far more serious than that.
00:24:15That's right, that's right.
00:24:17But, how was your husband when he wanted to really start seeking medical care for his
00:24:25pain problem?
00:24:26Well, I encouraged him to do so in his 20s, and he would sort of grudgingly go, because
00:24:34he knew he needed help, but I soon figured out why he didn't particularly want to go,
00:24:39because most doctors, they would take labs, and they'd say, Mr. Ogden, you know, I certainly
00:24:46can't disprove your claim that you have pain, but you looked like a real healthy man in
00:24:51your 30s to me.
00:24:52You got great labs.
00:24:54You know, doctors would do the standard labs that primary care doctors do, and his results
00:24:58were always good.
00:25:00And so, again, that was one of the things that got me into going to all the appointments.
00:25:05He had started out, went to college as a young man, kind of didn't know what he wanted to
00:25:10major in, and dropped out, and went to work as an apprentice electrician to learn how
00:25:15to be a commercial electrician, and he worked his way up to be a master electrician.
00:25:19But had we known the nature of his illness, he might have picked a different career, because
00:25:25that requires a lot of heavy physical work, looking up over his head, putting up lights
00:25:31and doing things like that, and he has problems with his neck.
00:25:34So I think through our ignorance, some of the things that he chose to do may have exacerbated
00:25:39his symptoms, and he finally was not able to work beyond the age of, I think, 43.
00:25:46And at that time, he realized he just had to stop.
00:25:49So he did stop and went back to college, and he was planning to be a teacher.
00:25:53He did very well.
00:25:54He graduated, got his Bachelor of Science, did extremely well, good grades, and then
00:26:00went on and got a scholarship to Syracuse University to a master's program.
00:26:04But about halfway through that first year, all of his symptoms just seemed to mushroom
00:26:09and not only did he have a physical pain and fatigue, cognitive difficulties, not being
00:26:16able to concentrate well, to compose written work, which obviously is very important at
00:26:25a graduate school level.
00:26:27And so he finally ended up, he made grades and he was OK, but he realized he just needed
00:26:33to withdraw.
00:26:34And that's when, in 1997, we started a full-time pursuit of better care for him.
00:26:40But we never found an answer for 13 years, from 1997 to 2010.
00:26:46And that's when we decided to see if Dr. Tennant might make room for him as a patient
00:26:50and evaluate him.
00:26:53And you just said something that triggered off something from my good friend and colleague,
00:26:59Rhianne Rothwell.
00:27:02And Rhianne, as I understand it, you just said you were getting so tired of telling
00:27:07people how good you looked, right?
00:27:10Well, now, are they talking about your natural good looks as a woman or as a patient now?
00:27:15But anyway, yeah, it's no problem.
00:27:22It is fine.
00:27:25You just look fine.
00:27:26And I'm not good, you know?
00:27:33Absolutely.
00:27:35Since you brought that up, let me ask you a question, and your husband a question.
00:27:44This idea that you look pretty good and you have terrible pain, what do you tell the doctors
00:27:50they should do?
00:27:52What's the answer?
00:27:54Growing pain, Lewis was told.
00:27:57And somebody else said he had growing pains, huh?
00:28:00Yeah, I was told I had growing pains, too, growing up.
00:28:03Is this for me, Rhianne?
00:28:05Yes.
00:28:06Yes.
00:28:06Okay, yeah.
00:28:09Do you know, I have often told the doctors that you got to look a little deeper because
00:28:16my pain is actually at a 9 or 10 every single day.
00:28:21Every minute, not every day.
00:28:23Yeah, and they're not controlling it with what little bit of pain meds I'm getting.
00:28:32I'm just barely getting by.
00:28:36Did any doctor suggest you needed a blood test, an MRI, a urine test, an electro test,
00:28:44anything at all?
00:28:45I have just gotten, by my just forceful demands, gotten new MRIs.
00:28:57And by my demanding them, and I am going to be sending them to you, they actually show
00:29:05I have, it's a miracle.
00:29:07I have absolutely no adhesive arachnoiditis at all.
00:29:14No sign of it.
00:29:15I am miraculously cured.
00:29:19I just have a little bit of arthritis in my back.
00:29:23Yeah, that's just crazy.
00:29:28You know, when I was diagnosed by you four years ago with severe adhesive arachnoiditis.
00:29:37So-
00:29:38And you're still symptomatic.
00:29:40Oh, extremely, extremely symptomatic, yes.
00:29:44Yes, with everything.
00:29:48If I go down any of the questionnaires for intractable pain or adhesive arachnoiditis,
00:29:54there's maybe one or two things that I say no to.
00:29:57It's yes, yes, yes, yes, yes.
00:30:01So it's crazy, but I look good.
00:30:07I was just had somebody else say that looking good, you know, taking care of yourself, well
00:30:13they always be a handicap.
00:30:16Somebody said the level of gaslights should be more if you look good.
00:30:20Well, what am I supposed to do?
00:30:21Shave my head and go in?
00:30:23Don't take a shower for 10 days?
00:30:25I don't know what they want.
00:30:28You know, I'm not sure what they expect.
00:30:31So confusing.
00:30:33Yeah.
00:30:35So yeah, I don't know what to say.
00:30:37I'm open for, you know.
00:30:39For ideas.
00:30:41Yeah.
00:30:42Well, anybody got a quick one out there?
00:30:44Because, you know, this is such a key issue that we've got to talk about.
00:30:51Is to tell doctors that they've got to evaluate people.
00:30:55Yeah.
00:30:55Come live my life, you know.
00:30:57You know, even today, there isn't a week goes by I don't hear from somebody who's attending
00:31:06a pain clinic somewhere and they have no diagnosis.
00:31:09They're just being, they've got back pain, head pain.
00:31:13That's their diagnosis.
00:31:15Head pain, arm pain, leg pain.
00:31:19And they are being given medication.
00:31:21So in some ways, you can understand government agencies who don't like this.
00:31:26I mean, you got to have a specific diagnosis and we will continue to work on this issue
00:31:35because we have a serious issue out there.
00:31:39We're going to talk about that in a minute, Kristen and I, because we do feel that there
00:31:44is some movement along this line.
00:31:46Somehow or another, there is this attitude out there in medicine that if you have pain,
00:31:54you don't need to have a diagnosis.
00:31:56You don't need to have blood tests.
00:31:58You don't need to have x-rays.
00:32:00Exactly.
00:32:01I don't know where this came from.
00:32:04Now, keep in mind, in my generation, you took symptoms and you always had laboratory.
00:32:09You did a physical exam.
00:32:11You took a history, a family history, and then you did laboratory tests, x-rays, and
00:32:15you got a diagnosis.
00:32:16You didn't start treatment without a diagnosis.
00:32:21In modern pain management, they start treatment symptomatically without making a diagnosis.
00:32:26Now, think about that for just a moment.
00:32:28Think about what we're saying here now.
00:32:30We have people being sent for epidural injections without a diagnosis.
00:32:38That's one of the reasons why we're interested in SCIDs.
00:32:41Think about that.
00:32:42You got back pain.
00:32:42That's not a diagnosis.
00:32:44All of a sudden, somebody's putting needle and cortisone into your spinal canal.
00:32:49Think about what's going on here.
00:32:51This is a loony bin.
00:32:53It's about the money.
00:32:55Yeah.
00:32:58Here's somebody else.
00:32:59This is one of their diagnoses.
00:33:00It says hip pain.
00:33:01That's not a diagnosis.
00:33:03I mean, is a hip pain arthritis?
00:33:06Is it an autoimmune disease?
00:33:08Is it an infectious disease?
00:33:10Is it a genetic disease?
00:33:14This idea where a diagnosis isn't being done, and you got an awful lot of people coming
00:33:19out of high tech.
00:33:21Doctors don't need to do a physical exam anymore.
00:33:24Yeah.
00:33:26Don't need to do an exam.
00:33:27Don't need to do any tests.
00:33:28Just treat.
00:33:29So whenever you hear that we're just going to use a algorithm or a protocol, be a little
00:33:34suspicious about that, that someone might be being treated without a proper evaluation,
00:33:40exam, and diagnosis.
00:33:42Okay.
00:33:43So Rhian, thanks for bringing it up.
00:33:44You're so absolutely right.
00:33:47You caught me a little off guard.
00:33:49I'm going to think about this.
00:33:50Let's come up with some ideas of what we tell these doctors.
00:33:55In other words, do a diagnosis, doc.
00:33:58Let me tell you, my most unfavorite diagnosis, failed back surgery syndrome.
00:34:05What kind of a diagnosis?
00:34:06That's not a diagnosis.
00:34:08That's an escape.
00:34:09That's an excuse.
00:34:09That's it.
00:34:10That's it.
00:34:12So anyway, we have not beat this with the death.
00:34:16We're going to come back and beat it later.
00:34:19Okay.
00:34:20We haven't beat this with the death.
00:34:21We're going to continue on.
00:34:23Uh, okay.
00:34:24But let me get back to Kristin for just a minute.
00:34:27Okay.
00:34:27Your husband had the same problem.
00:34:29He looked too good to be sick, right?
00:34:30Right.
00:34:31All right.
00:34:31So what happened after that?
00:34:33Well, we got to come see you and started, started improving, got better.
00:34:37We learned more.
00:34:39We understood that there were, it was a reason that another doctor had prescribed benzodiazepines
00:34:44for him.
00:34:45And that's because he had kind of a hyperactive nervous system that was dysfunctional.
00:34:49And I remember you admiring the doctor and talking to us and said, well, I'm really glad
00:34:54you've got a pretty good regimen here already.
00:34:56Cause there's obviously some doctors, but the thing is they were not, they weren't treating
00:35:01pain.
00:35:01They were treating other aspects of his health and they were good things, but he never got
00:35:06any, any significant help for the pain.
00:35:09Despite some doctors who really did try our primary care doctor tried, she tried every
00:35:14opioid that was authorized at the time.
00:35:18But Lewis is one of those unfortunate patients who does require a higher than usual dose
00:35:23and the doctor, the family practitioner would go up to the maximum dose.
00:35:27That was sort of the FDA recommendation.
00:35:31Not a rule.
00:35:32We know that now.
00:35:34But at those doses, they just didn't work.
00:35:37And so we didn't know where to go.
00:35:45That's a good question.
00:35:46Because one thing I learned about my husband over the first several years that we were
00:35:49married is that he was kind of raised by wonderful people, but who were kind of brought up thinking,
00:35:57well, it runs in the family.
00:35:58There's nothing you can really do about it.
00:35:59So there's no point in complaining about it.
00:36:02So he didn't talk about his pain, even to me.
00:36:06He basically would slip a little tin of et cetera in his pocket every morning before
00:36:10he would go off to work.
00:36:12And it was quite a while before I knew he had headache.
00:36:16But I didn't know that it was constant.
00:36:18And I think it had been constant for a long time.
00:36:21And I think then the choice of work, getting into the construction field that required
00:36:25heavy work and lifting and looking up for long periods of time.
00:36:29All those things just kind of made it worse.
00:36:30And I think it was constant for a long time, but it then got more severe in its magnitude.
00:36:39OK.
00:36:44So at some point in time, he went on opioid drugs.
00:36:51He's done quite well.
00:36:53He had a small dose of Percocet for quite a few years that that was helpful.
00:36:57Our family doctor finally decided that the only thing that really seemed to give him
00:37:01any relief at all was Percocet.
00:37:03And he had a dose that was for Percocet, a fairly high dose.
00:37:07And what it did was kind of take the edge off so that he could stand to make it through
00:37:12the day.
00:37:12But it was never the kind of pain relief that enables a person to really be functional and
00:37:18productive.
00:37:20So it was a problem.
00:37:21It was a problem for many years.
00:37:28And he was doing fairly well, if he could just get his medicine, as I recall, pretty
00:37:33much.
00:37:34So he's now been on opioids a long time and doing quite well, as you know.
00:37:39Yes, he's sort of one of those fellows that begs the question that they're going to be
00:37:45harmful because they certainly haven't harmed him.
00:37:48And he is quite functional and happily engaged in doing a lot of things at home.
00:37:53We bought a tractor a while back so that he can go out and grade our driveway and mow
00:37:59our field, bush hog our field.
00:38:01You know, some people think those kinds of activities are impossible for a person who's
00:38:08seriously ill, but they're not if they get the right help.
00:38:11And if they know how to manage their daily activities, not overdo it, get plenty of rest,
00:38:17he's doing very well.
00:38:18I think he could be the poster boy for opioid pain care.
00:38:23All right, so how long has he taken opioids?
00:38:25How many years?
00:38:27He started taking the lower dose opioids and went through checking every one in the late
00:38:3190s.
00:38:32Then he went on the higher dose opioids shortly before he came to see you when he saw Dr.
00:38:36Hochman for a period of time, who sadly passed away not too long after we went with him.
00:38:41And I knew about Dr.
00:38:43Tennant, Lewis did, so I called and I never thought that a prominent, well-known doctor
00:38:49would answer his own phone.
00:38:50And he said, Forrest Tennant.
00:38:53And I was almost speechless.
00:38:54I didn't know how to react to that.
00:38:56I wasn't expecting it, but I told him who we were and he said, Oh yeah, we're going
00:38:59to take several of Dr.
00:39:00Hochman's patients.
00:39:02So here, I'm going to hand the phone to Miriam and she can make you an appointment.
00:39:05You were in your car at the time, I think, but that was that.
00:39:09And then we showed up to see you in October of 2010.
00:39:13And you stabilized his dose in December of 2010.
00:39:16And just to dispel another myth, he was your patient until you retired and he never required
00:39:22an increase in his dose.
00:39:24Once you got him titrated to the right level.
00:39:29Opioids are not effective and lose their power.
00:39:33And some people, that's just not true.
00:39:35Some people do very well on them.
00:39:36And I follow a whole lot of people who have been on opioids for over 30 years and high
00:39:42dosages, I might add.
00:39:44So there have been an awful lot of misinformation, intentional misinformation, I might add,
00:39:50because some people can do very well with opioids for most of their life.
00:39:56The good Lord didn't put that opium plant out there in the field for no good reason.
00:40:00Okay.
00:40:00Remember, that's a herbal natural product.
00:40:04And then this idea that it's a terrible unsaved drug is just given in the right dosage, the
00:40:12right way, as you know, can be very, it's critical.
00:40:15It keeps you alive.
00:40:16It keeps you going.
00:40:17Now, along that line, you said a while ago that I didn't realize that I was the person
00:40:24to blame for getting you into advocacy.
00:40:25I thought you did this on your own.
00:40:27I was kind of barely stumbling along, but you kind of gave me a push.
00:40:32So let's go back to when you got into doing advocacy and self-help, what's the first thing
00:40:40you did to get started?
00:40:42Because I want the people here to know the long string of things that you have done to
00:40:48help everybody in this country.
00:40:49Okay.
00:40:50What was the first thing you started doing?
00:40:52Well, I have to say that the first thing that really got me mad, and I knew that I had to
00:40:58write and complain, was when Federal Blue Cross decided and sent us a letter, you know,
00:41:04I'm a federal employee.
00:41:05I have Federal Blue Cross.
00:41:06It was quite good insurance in those days.
00:41:08I got a letter saying that our doctors have decided that Mr. Ogden's dose is not medically
00:41:13necessary.
00:41:14So we're only going to reimburse you for half of it.
00:41:17And I'm like, and then they went so far as to tell us that once his dose was reduced
00:41:25by 50%, he would feel a lot better.
00:41:29I mean, I never realized the extent of ignorance until we got these ridiculous letters.
00:41:37So we wrote to them.
00:41:39We asked for reconsideration.
00:41:40We were denied.
00:41:42We appealed.
00:41:43Once again, we were denied.
00:41:45There were at least three pain specialists who did an evaluation of what was on paper,
00:41:49and they all said, oh, he'll feel better when he's on half that dose.
00:41:53Let's get this straight now.
00:41:55You're going to get better when you cut your medicine in half.
00:42:00Is that true?
00:42:01Is that what they told you?
00:42:02Yeah.
00:42:02Anybody else had that experience out there?
00:42:04If you reduce your opioids, you'll feel better.
00:42:08That is the most ludicrous thing.
00:42:13How people get by with saying these things, I don't know.
00:42:17Okay.
00:42:18I've come to think that Federal Blue Cross saw us as an opportunity for them to take
00:42:23a position against higher dose opioids because they were paying up to that point.
00:42:29You know, they were paying for his full dose, and we had a co-pay, but they were paying.
00:42:34I don't think they liked paying, and they thought, well, we're going to make an example of
00:42:38this gentleman and just cut it back, and so they did.
00:42:43Of course, they made clear in their letter that you have the option of paying for the
00:42:47rest of it with your own money, and we were able to do that, and so we continued to do that
00:42:52because I remember telling Dr. Timmons, I don't care what else I have to stop buying or paying
00:42:57for, we've discovered that this medication at the high dose makes his life so much better.
00:43:05You know, we went to the FDA that same year to a meeting.
00:43:08It was a patient-focused meeting for people with the only diagnosis he had at that time,
00:43:14which was fibromyalgia, and they went around the room.
00:43:17There was like 100 people there, pain patients, and they asked people questions, and they
00:43:22even brought up opioids, and they asked, well, do opioids help with your pain?
00:43:27And I was real proud of Lewis.
00:43:28He raised his hand, and when he was called on, he stood up and said, I want to tell you,
00:43:32I'm a patient of Dr. Forrest-Tennant, and I have been taking these medications, this
00:43:36was in 2014, since 2010 at the doses he prescribes, and the last four years have been the best
00:43:43years of my adult life, and I'm 64 years old.
00:43:49So, I mean, why don't people just choose not to get it?
00:43:52It's not that you can't.
00:43:54Wow.
00:43:55We had a lot of opportunities to explain ourselves.
00:43:58Once we got in there and saw that at least some people in FDA really were listening,
00:44:03we went to a number of other meetings, and I was very fortunate to be offered the chance
00:44:07to speak on the agenda at one of them, and we went other times and talked as well.
00:44:14Let's segue right to what you just said.
00:44:16I don't know of anybody in this country, as an advocate, who's gone to more government
00:44:23meetings, corresponded with them, given them ideas in writing and otherwise than you.
00:44:30Now, after you decided to get into the advocacy business, as a volunteer,
00:44:36incidentally, you never had paid for anything, what was your first contact as an advocate
00:44:43trying to keep opioids and pain going?
00:44:49FDA, really, I suppose.
00:44:50One thing we did, you may recall, we kind of worked on an idea for a special program
00:44:56that would acknowledge people with unusual medical conditions and requirements for medication,
00:45:02and we actually got a meeting with some members of the FDA staff, and several of us went.
00:45:06Are you blaming me for getting you to do that?
00:45:08No, sir.
00:45:11I'm giving you credit, I'm not blaming you.
00:45:12Okay.
00:45:15As I remember, I've got a broom that I push her with out there.
00:45:20Get out there, get on this agency, would you?
00:45:24Oh, that's not fair.
00:45:27And you just drew a line down the center of it, and you put name, email address, and that's how
00:45:32people signed up for our advocacy group, Families for Intractable Pain Relief, and we have a lot of
00:45:36members.
00:45:37We're kind of a low profile group, but the people who belong are mostly patients of Dr.
00:45:44Tennant, and then others who have learned about what we do from what little impact we've had.
00:45:53Anybody who wants to sign on and be in the advocacy group, send Jimmy, get an email or
00:45:58something, and we'll put you on the list, because it's really paying off.
00:46:05We've got a new group of people, I think, in an awful lot of government agencies.
00:46:10A lot of the old hard-nosed people are gone.
00:46:13I think we have some new people, and I think they're gone because they were wrong in their
00:46:16opinions.
00:46:18And we've just recently had some real good successes that we want to get into.
00:46:25The thing I want to talk to you about tonight, the reason I've asked Kristen to be here,
00:46:31is of all things, I never thought I'd say this again, California, the California Medical Board
00:46:40has just drafted the most positive, heartwarming government document on pain treatment that's
00:46:47come down the pipe in many years.
00:46:51It just came out, and we're going to talk about that in the last 15 minutes of the program
00:46:56here now.
00:46:57In other words, in July, the state of California, now they've got a lot of problems, no question,
00:47:03but they've just come out with the Medical Board of California Guidelines for Prescribing
00:47:09Controlled Substances for Pain.
00:47:11They're working with the Medical Board, and this document is the way forward.
00:47:17I hope that it's shared throughout the country.
00:47:20We've certainly got some other things going, like the Supreme Court decision.
00:47:24But anyway, Kristen, you've been working with the Medical Board, you've appeared in a forum,
00:47:30and you've been a U.S. consultant.
00:47:32How long have you been working with the Board, and tell us what's happened with these new
00:47:36guidelines?
00:47:37Well, we got interested in the California Board of Medicine, because they, in late 2020,
00:47:44I read something that had been published in MedPage today, and it was an interview with
00:47:48Dr. Richard Thorpe, who practiced up in Northern California and was a board member, and he
00:47:56talked about this rather awful project the California Board had undertaken called the
00:48:01Death Certificate Project.
00:48:03They were concerned about opioid overdoses and that, but the way they went about their
00:48:09project just ended up getting doctors in trouble, pushing them out of practice, and ending up
00:48:16with patients being deprived of care.
00:48:18It sort of started and then it mushroomed.
00:48:21I see Dr. Richard who?
00:48:22T-H-O-R-P.
00:48:24He is retired now, but he still is on the board.
00:48:26Early in 2021, I attended the first California Board of Medicine meeting, and when I say
00:48:32attended, one of the things they do that I really appreciated about them is they open
00:48:36it up for virtual participation, and you can be anywhere and attend the meeting.
00:48:41You just have to sign up in advance, so they let you in when you try to log on, and they
00:48:46also provide multiple opportunities for viewers from the public, whether you were there in
00:48:52person, which was pre-COVID.
00:48:53They had people come in in person, or if you were on the computer, you were given an opportunity
00:48:59to speak as a member of the public.
00:49:00They had repeated opportunities during the course of a single meeting for members of
00:49:05the public to offer public comment, so there were lots of opportunities to get your thoughts
00:49:10out there, and they started listening.
00:49:13Next thing you knew, they called in April of 21 a stakeholders meeting, and it was a
00:49:19little bit less formal than a board meeting.
00:49:21They actually had opportunities to talk for five minutes about whatever was on your mind,
00:49:26and so I took advantage of that, and I had my points laid out and talked about the problems
00:49:31that people with intractable pain just don't have care.
00:49:35They don't have access, and when I finished, the board rules were sort of suspended in
00:49:42terms of how the board members could participate.
00:49:45They were allowed to give us feedback, and I was just floored almost when they said,
00:49:50I was just floored almost when a Dr. Howard Krauss, who is no longer on the board, said,
00:49:57well, I want to say that I'm really glad for what Ms. Ogden brought up, because this is
00:50:00a really serious problem, and we really need to try to do something about it, and he went
00:50:04on for a minute or so, and then Dr. Richard Thorpe spoke up, and it ended up that he was
00:50:10ended up being asking to be the leader of the task force to update and revise the guidelines,
00:50:18and from what Dr. Thorpe had to say, I was convinced that he got it.
00:50:23He got it, and he was the leader and a great influence, I think, on the outcome,
00:50:28how the project went.
00:50:29There were several people.
00:50:31Mr. Brooks, whose first name I can't recall, but he's one of the non-medical members,
00:50:36he was very supportive.
00:50:38The past executive director, Mr. William Persifka, was also very supportive.
00:50:44Lots of input was given.
00:50:46Every time they had a meeting, you had the opportunity to provide advanced input in writing,
00:50:51and your input gets there by the cutoff date.
00:50:55It's provided in advance of the meeting to every board member to read what you had to say,
00:50:59then you have the opportunities to speak.
00:51:01I was really on a roll one meeting, and I had studied the agenda carefully and noticed that
00:51:07they always have an update about the status of their expert reviewer program and their
00:51:13investigative program.
00:51:15I took the opportunity to, I already had one spiel to say, but I pushed again, and I said,
00:51:19well, it's important.
00:51:20As you go about updating these guidelines, you need to be sure there's training for your
00:51:25investigators and your expert reviewers so they'll understand the changes and that your
00:51:29intent has changed.
00:51:31What we see in the guidelines as published, they're written in a much more positive tone.
00:51:37The board actually accepted responsibility and acknowledged that its prior actions with
00:51:44this death certificate project had caused harm.
00:51:47I was a government worker for 36 years.
00:51:49Let me tell you, government agencies don't often say, oops, we blew it.
00:51:54I thought that was quite remarkable.
00:51:56The document itself is much more patient-focused, patient-friendly, and it talks about that
00:52:04they want to ensure access to paying patients, and they want to ensure that the doctors who
00:52:09treat them have good support.
00:52:13Wow, that is amazing.
00:52:15That says something.
00:52:17To see a government agency print what I'm about to read is something I've never seen.
00:52:25The reason I was very concerned about these medical board proposals is that I'm the guy
00:52:31who wrote, actually, the Attractive Pain Law in California and the Pain Patient Compromise
00:52:37Clearback in the 1990s.
00:52:40Given all of the stuff that's gone on in the last several years, I was very concerned that
00:52:45the medical board would just dump all these laws, recommend they not be followed, try
00:52:51to get the legislature to pull the laws, and they didn't do that.
00:52:56And so I'm elated, and that's why, honestly, I got Kristen on the phone to get you and
00:53:03your gang, and let's start trying to work with them, and it worked.
00:53:07Now, I want to read you this right here, and you're just not going to, just like I have
00:53:12a hard time believing this, but you've got to give these people great credit.
00:53:16It says, and here's the government now, the medical board, okay, it is recognized that
00:53:23between the board's death certificate project and the CDC 2016 guidelines, a chilling effect
00:53:30was felt, and physicians became less willing to treat patients with chronic pain.
00:53:35This situation became significantly worse with the abrupt closure of 29 pain management
00:53:40centers in May 2021.
00:53:43Approximately 20,000 patients were left without referrals or treatment plans, resulting in
00:53:48potentially dangerous disruptions in care for patients receiving treatment with opioid
00:53:53therapy.
00:53:55As the board discussed the need to update the 2014 prescribing guidelines, it was emphasized
00:54:03that a change in tone was necessary to provide support and guidance to physicians prescribing
00:54:10in a way that is effective for their patients to have enough flexibility to deal with pain
00:54:16patients that don't fall into the normal guidelines.
00:54:19Now, I can't believe I'm seeing it, and I see what they've done.
00:54:27This is a change in attitude on a medical board that this country has not seen until
00:54:31now.
00:54:32Now, in the interest of time, I want to go to the thing in this document that's going
00:54:39to put a pressure a little on everybody who's watching this now.
00:54:42There's something about these guidelines that is very, very, to me, gives us an opportunity
00:54:51to make a difference.
00:54:52Okay.
00:54:53Now, the California has defined what they've redefined is intractable pain.
00:55:01Now, I'm going to read you the definition.
00:55:02It's the same definition we used in 1990, 30 years ago, and that is intractable pain
00:55:09is a state in which the cause cannot be removed or otherwise treated, and no relief or cure
00:55:16has been found after reasonable efforts.
00:55:19Now, guess what?
00:55:22In the document, they literally say that people who need end of life care and intractable
00:55:31pain care don't have to follow the guideline.
00:55:35You got to remember to think about what that means.
00:55:38That means that that doctor doesn't have restriction on dosages, legs type, injectable
00:55:44versus oral benzodiazepines rather than just gabapent.
00:55:49This means you could take Adderall rather than Zabalta.
00:55:55Okay.
00:55:56In other words, if you are an intractable pain patient, these guidelines are exempt.
00:56:04If you have end of life care, you're exempt from these guidelines.
00:56:08Now, here's where we come in.
00:56:11This is an opening for us to define more distinctly what is the definition of intractable
00:56:20pain, and here's where that laboratory tests are going to come in, and here's where the
00:56:25MRIs are going to come in.
00:56:27Here's where your blood pressure and pulse monitoring is going to come in.
00:56:31In other words, Kristen and her people and anybody watching this can help us come to
00:56:38a consensus in this country on what is intractable pain because we've actually got the biggest
00:56:44state in the union now saying, if you'll do that, if you'll tell us a document, define
00:56:50intractable pain in more details, the doctor and the patient and the family can come up
00:56:57with their own plan.
00:56:59That's a real advance.
00:57:00That's a real opportunity, and we should take advantage of it.
00:57:05I would just like to say that there's more to do.
00:57:09One thing that the board also committed to do was to provide a big outreach effort to
00:57:18get doctors to understand that it's going to be safe to come back to pain care, and
00:57:23we haven't heard anything about that yet, so there is a meeting next Thursday and Friday,
00:57:28and I will be attending at least on Friday.
00:57:30A number of other advocates will be there, and we want to press for the board to follow
00:57:35through on that commitment because you can't just put out a document if you don't call
00:57:40attention to it and convince people that it's real.
00:57:43We're not sure how much things will change, but there will be a lot of other people, and
00:57:46I just want to shout out for Monty Goddard and Rhonda Favara, Heather Grace, Ray Dean
00:57:52Cook.
00:57:52Most of you have heard of Red Laher.
00:57:54Red's a friend.
00:57:55He has written and given input to the California Board of Medicine.
00:58:00This has been driven by a lot of people in California, but other people around the country
00:58:06whose were Dr. Tennant's patients as well, or whose spouse or significant other may have
00:58:11been.
00:58:12Anne Suquay, Joe Kramer.
00:58:15That covers a number of states right there, the majority from California, but there's
00:58:19an interest all over the country because we want to see California take the lead again
00:58:24to try to get this situation turned around.
00:58:28California was a leader, and we believe can be again.
00:58:33Well, again, I want to thank you, Kristen, for your efforts.
00:58:36I want to thank the California Medical Board for taking an outstanding leadership.
00:58:41This was totally unexpected, but gosh, what a godsend, and it goes to show that there
00:58:47are still some good people left out there who care and who want to help, and now we
00:58:53can help nudge this forward.
00:58:57But it is interesting tonight that some of you talked about how no tests are being done,
00:59:02people are being shoved aside.
00:59:04Well, the one thing we can do to help all of this is to come up with how you diagnose
00:59:12what I call the intractable pain syndrome, if you will, but put some specific guidelines
00:59:17on intractable pain and see if we can't get doctors everywhere and get the medical
00:59:22profession to recognize those people who really do have the serious problems and who need
00:59:26help.
00:59:27Again, Jamie, thanks for sponsoring this.
00:59:30Appreciate all the questions.
00:59:32Put them together, and we'll have another session next time.
00:59:36May I say one more sentence?
00:59:37Oh, sure, you bet.
00:59:38My motto for Families for Intractable Pain Relief is never give up.
00:59:41Be persistent.
00:59:42Keep going to these meetings.
00:59:44Go every time.
00:59:45Raise your hand and get to talk because that's what it takes to make a difference.
00:59:49Right.
00:59:50Excellent.
00:59:51Thank you, Kristen, for being here.
00:59:53Thank you, Dr. Tennant.
00:59:54And thank each of you who came.
00:59:56Wonderful, wonderful time and nearly miraculous news.
01:00:00That's just incredible.
01:00:01Thank you all.
01:00:01Have a great night, and you are not alone.
01:00:05I'll stay behind.
01:00:07Thank you, guys.