00:00



I probably should preface this but



00:02



everyone this is this is about the most



00:05



ad-hoc random Skype I think we both have



00:10



ever had isn't it and you've been



00:13



incredibly gracious to let me have some



00:15



time with you to talk about various



00:18



things so thank you for doing that



00:23



so yeah



00:25



basically it was just a catch it really



00:27



has been a long time since we've spoken



00:30



like this in terms of giving some people



00:35



and the community an update so I was



00:38



hoping if I could ask you to a few



00:40



questions and you can just go wild with



00:44



them wrong whatever comes to your mind



00:46



you say so one of the western front of



00:51



the the the biggest pieces of news that



00:54



I know that people are kind of stoked



00:56



about is the new CER see the



00:59



collaborative research center with Jonas



01:02



Bergquist that I think is at Uppsala



01:04



University I probably pronounced that



01:06



wrong I don't know if you could just



01:10



give a little overview of that for



01:13



people in terms of how that will



01:15



integrate with Stanford and Harvard and



01:19



various things well he has a very nice



01:23



facility with a lot of high-end



01:25



equipment and one of the particular



01:30



values of using him is that he does a



01:34



lot of spinal tap on patients and he's



01:36



very good at it that's that's a concern



01:43



with some of the patients with how you



01:44



do a spinal tap because sometimes they



01:47



have a lot of pain with that and he says



01:50



that he if he does it in a good way that



01:52



doesn't have much pain in fact he said



01:56



the patients would have it brother have



01:58



a spinal tap than a standard blood draw



02:01



and turned a level of pain so puts into



02:04



perspective and and he does have access



02:09



to MA CFS patients he's done a number of



02:12



experiments



02:13



sort of funded by the open medicine



02:17



foundation looking for antibodies but I



02:21



think it would be a good collaboration



02:23



especially when we wouldn't like to do



02:25



something with the spine of blood right



02:29



now that's sort of his area we can



02:32



certainly expand that and also it's



02:36



useful to have a validation sometimes



02:41



when you find something you think is



02:43



really very important you want to make



02:46



sure that it's reproducible in a



02:48



different laboratory so that's another



02:50



place that we will use him as facilities



02:54



are pretty much alike what we have so



02:58



really really top-end essentially yes



03:02



and we've been talking about maybe doing



03:04



some kinds of trials with canary Neen



03:08



injected into the spinal hood



03:17



they're doing similar experiments like



03:19



that with in a clinical trial for a



03:23



different disease which I don't think I



03:26



should talk about because it may be



03:27



confidential



03:29



but things of that type with what we



03:33



would like him to work on and we may



03:38



have been trying to validate what we



03:39



find in the metabolic trap and see if he



03:44



finds the same thing with his patients



03:47



always worried about different artifacts



03:50



or equipment malfunctions or all sorts



03:52



of problems and you don't want to get



03:57



led onto the wrong in the wrong



03:59



direction because of the instrumentation



04:03



problems yeah yeah I remember you



04:07



mentioning that before I think in our



04:09



last chart or in our update about the



04:11



the issues with I think it was mass



04:14



spectrometry yeah well it's a the amount



04:19



of tryptophan in generating in the cells



04:22



is not very high and the other major



04:26



problem is



04:28



there aren't very many cells that



04:30



actually have the Canadian pathway on



04:34



helpfully about 1% so that all reduces



04:39



the signal and I don't know if he has



04:44



the state-of-the-art mass spectrometers



04:46



there that have a high sensitivity or



04:47



not but that would be what we would



04:51



explore and also tell him what we have



04:54



concluded him how to do the experiment



04:57



and see if he concurs where he may



04:59



decide to try it in a different way yes



05:03



that's really interesting actually



05:05



because I think a lot of people have or



05:08



maybe it's just me but have associated



05:11



Jonas with kind of immunology and and



05:20



and the spinal tap stuff before just



05:26



from from what he's been talking about



05:27



at the conferences right now but that's



05:32



really interesting actually to know that



05:36



he may be testing or it may be a plan to



05:39



test kind of any injected injected into



05:44



the spinal fluid I know these ideas all



05:48



kind of integrate you know metabolic in



05:51



not immunological and stuff but yeah



05:55



that's I think that's probably something



05:58



a lot of people didn't know so that's



06:02



really yeah really good to know well



06:06



it's all focused on trying to understand



06:08



what's really happening in this disease



06:11



and and also how we might launch elate



06:15



it in some way or other yes what you'd



06:18



like to have is the primary cause and of



06:21



course that's always very difficult to



06:22



be sure that you're you're actually in



06:24



the primary cause there are you on a



06:26



side track about some effect of the



06:28



disease



06:33



now that's us really good um really



06:36



interesting I think a lot of people will



06:40



be very interested enough sure that kind



06:44



of kind of brings me on to just another



06:48



point which was the metabolic trap



06:51



itself whether there was any news I know



06:54



obviously there's some news that you've



06:56



just spoken about we've Jonas but



07:00



whether there's any update to the mass



07:05



spectrometry problems that you can give



07:08



out all well we've been looking at the



07:11



error analysis you know what is this



07:13



what is the standard error and our



07:16



measurements and it's pretty high and



07:19



that's making us a little bit concerned



07:22



and I think we need to have a more



07:26



accurate determination and problems are



07:29



the sensitivity the mass spectrometer



07:31



the number of cells that have the



07:34



pathway and then another problem that we



07:37



are we realized is that the we have to



07:40



do an incubation in media we use equals



07:43



media that's classic and we didn't



07:47



realize at the time but eagles media has



07:49



25 milligrams per minute Tripta thing



07:53



and that dilutes our label and plasma



08:01



only has 5 milligrams per mil so I don't



08:05



exactly trip Eagles media was made



08:08



developed back in the 1950s so they



08:11



probably even didn't even know how much



08:13



tryptophane was in the plasma but it



08:16



worries us that we're putting in pretty



08:18



high trip today so we have found some



08:22



eagles media without tryptophane and so



08:27



we're now using that so that we can



08:30



control the amount of tryptophan that's



08:32



cells are incubated in and we can



08:35



increase the amount of label percent of



08:38



the label and that should give us



08:40



something about an increase in signal



08:44



but most unlike Schneider has let us use



08:46



his very high-end mass spectrometer he



08:51



has actually three of them and so and



08:56



the postdoc that's running it is excited



08:59



about this project so he will pitch in



09:01



and helping us now then that's good



09:04



that's more work force and he's very



09:07



experienced in it so now we have two



09:10



very experienced mass spectrometers



09:12



people so we carried out that experiment



09:18



all the way through with it changed in



09:20



the media we enriched for the dendritic



09:24



cells by pulling out the T cells and B



09:27



cells and not including them we still



09:31



use the same number of cells so that



09:33



enriches for the antigen presenting



09:36



cells that are in the wet sample and



09:40



then that went into the higher



09:42



sensitivity mass spectrometer so all



09:45



combined that increases the signal about



09:48



a hundredfold I think it's a lot learner



09:52



that's going to be a lot more accurate



09:54



and but we run one patient so far under



09:58



these conditions and that we get the



10:00



same kind of increase in tryptophane and



10:03



reduction and contain over healthy



10:05



control okay so but now but we have



10:10



samples already collected from patients



10:13



and I think enough that we can run I



10:16



think on Friday they were four samples



10:20



ready to go into the mass spectrometer



10:23



[Music]



10:25



Julie has set aside as the cells are



10:27



frozen and then we can pull them out and



10:29



and use them so hopefully that will go



10:33



quickly we're hopeful to get quite a few



10:36



cells and healthy control a patient and



10:38



healthy control samples in the next



10:40



couple of weeks and that's be a much



10:44



more rigorous test of the hypothesis one



10:49



of the considerations and complexities



10:51



of this is that this trap is presumably



10:55



a cellular based process



10:57



so it could happen in one cell and or



11:00



not in another



11:02



and once it's trapped it that cell is



11:05



trapped it's also possible to curse you



11:08



the stem cells that are producing the



11:10



immune cells could be trapped and then



11:12



all cells generated from that stem cell



11:14



would be continued to be trapped



11:17



these are these of this whole thing that



11:20



we don't totally understand and so those



11:24



are also have to get some some



11:26



explorations of that we would like to



11:30



try to start some cell culture



11:35



experiments and that may be done by



11:38



making stem cells and then generating



11:42



the right side sub cells from those stem



11:44



cells but that requires an expert in



11:47



that field we have to find one and there



11:50



is a collaboration on this project over



11:53



recruit somebody that you do to the



11:56



center to do that I think that's it



11:59



that's a really important no actually



12:01



isn't it that that comes up time and



12:03



time again is that so much of this is



12:06



cutting-edge research and it requires



12:10



almost new tests to be made or tests



12:13



that haven't been run before correct and



12:16



people in very specialist fields to be



12:21



brought along onto the team which isn't



12:23



a particularly necessarily a quick



12:25



process yeah and it seems like



12:27



everything that we do has never been



12:28



done before so it's always yeah but no



12:35



that's fascinating and yeah give some



12:40



cell culture and we can reproduce them



12:42



we can actually create you know



12:45



effectively create the disease that good



12:48



cells that aren't trapped and get them



12:49



trapped that when maybe allow us to set



12:54



up a sample of you know a modeling



12:56



system that would allow us to see how we



12:59



could get them out of the trap yes



13:02



because all the ideas that we have



13:06



currently and the modeling all comes



13:08



from measurements that were made years



13:10



ago



13:11



and it's always a possibility it's



13:13



something isn't quite correct and all



13:16



that it's always important to check



13:19



everything yeah yeah so yeah that makes



13:25



a lot of sense I think that's um yeah



13:29



there's a lot of clarity with that one



13:33



one thing that gets mentioned obviously



13:36



being on the forums and and talking to



13:41



patients and seeing things that are



13:44



brought up one thing that I do know gets



13:45



a lot of attention is the impedance



13:49



device so obviously the the fact that



13:54



healthy cells cells from healthy



13:58



controls or as healthy as controls as



14:01



one can get with Emmy Bloods show a



14:06



certain impedance signal similar to Emmy



14:10



cells with Emmy patients serum hopefully



14:16



I've got that right and my brain fog



14:17



isn't confused but um and yeah I don't



14:23



know if you can kind of ELISA date on



14:27



how how that's going if there's any



14:31



progress in terms of filtration if



14:34



there's molecule or molecules that have



14:37



been found or basically just what just



14:41



what the progress is on that really if



14:43



there has been any since because it's so



14:47



it's such a dramatic thing isn't it went



14:49



to see that you know healthy healthy



14:52



patients cells get seem to be having a



14:58



very severe response to any patients



15:01



blood it's quite a yes



15:02



rounding really and gets a lot of people



15:06



excited so I don't know if you can talk



15:09



a little bit about that if there's if



15:11



that you know the current state well one



15:13



thing is that we've written up the



15:15



current status of it simply because we



15:18



had a very good statistic



15:21



the probability that it's this this



15:26



difference could occur by chance was one



15:30



chance in a million so that's was



15:33



sufficient to try to do a publication



15:37



and that has been renewed by an engineer



15:41



about the circuitry and the design and



15:44



it's reviewed by a medical person that



15:48



does diagnostic testing so they made



15:51



some suggestions we made those



15:53



Corrections the paper is going to



15:55



Proceedings of the National Academy of



15:56



Science



15:58



I think it's passed the review it's now



16:01



at the editor but we think it's all good



16:07



to go and it will be out soon so we have



16:15



done quite a few experiments trying to



16:17



figure out what it is



16:19



we've done some filtrations



16:22



and it's large but now it appears that



16:27



it's quite large and it's it's possible



16:30



in some kind of particle and of course



16:34



this could be mixed with you know some



16:36



all small molecules contributing and and



16:39



so forth it's what we're looking for is



16:44



the thing that causes the biggest effect



16:47



yeah it could be a particle and so



16:50



that's necessarily where that is



16:52



the moment trying to figure what that



16:54



particle might be we might take the try



17:00



to purify that particle better and then



17:04



break it apart and and either do a mass



17:09



spec analysis of it or some other kind



17:12



of analysis you see what's it what what



17:14



is in the particle and that might give



17:15



us a good clue yes but an the biggest



17:20



interest is really to try to see if we



17:22



can find some drugs that might abolish



17:26



the that signal it's not necessarily a



17:30



cure or even a treatment but it's



17:32



possible and it would be worthwhile



17:35



what kind of compounds can kind of



17:37



reduce the signal yeah so that's an



17:42



effort that we all make and but to do



17:46



that we really need to change the



17:48



circuitry so that we can screen the



17:51



amount of blood that we require for this



17:54



is about one drop so a blood drop can do



17:58



many many essays independent circuits



18:02



before that and there isn't a there



18:05



isn't a commercial device that will do



18:07



that so we have to design it and build



18:10



it and so that's sort of where that's ad



18:13



and the a research associate that was



18:17



working with me Rahim has accepted a job



18:21



at University of California at Irvine



18:23



and they opened electrical engineering



18:26



so that will allow him to bring in new



18:30



students to help him work on the project



18:34



so it represents a bit of an expansion



18:36



of the efforts a lot of stuff will still



18:39



be around here at Stanford because we we



18:42



collect the patient's blood and stuff so



18:45



the the device development and other



18:47



parts of that will happen in Irvine it's



18:50



not that far away she sorts like that



18:55



the biological assays will probably



18:58



continue to run in Stanford yeah I just



19:02



have saved the cost because if he does



19:04



the biological stuff too then he has to



19:05



have a yes this has a set up for



19:08



collecting the blood and a global



19:11



phlebotomist and someone to take charge



19:13



of the patients and it would represent a



19:16



duplication of effort since we do that



19:20



had Stanford in any way yes okay I think



19:24



just maybe one yeah just to make sure



19:26



and I think you already have made made



19:29



it very clear but I think it's it it's



19:32



easy I kind of get pulled into the fore



19:35



as well that it's this whole filtration



19:37



thing is a lot it almost comes across a



19:40



lot more a lot more simpler than it



19:43



actually is it's actually a very complex



19:44



thing to find this molecule or molecules



19:49



I kind of think of it as a kind of



19:52



fishing net and then trying to scoop out



19:54



things but it really isn't quite like



19:56



that right it it's a bit more



19:59



complicated



20:00



but yeah I do know people are very



20:03



interested in in that in particular so



20:07



that's really good to hear some



20:08



clarification on that and the blood flow



20:15



device only been doing a lot of modeling



20:21



of the device to try to help in its



20:24



design I've made a new fabrication



20:27



design this is the red red blood red



20:32



blood cell all right that should maybe



20:36



give us a what we're hoping for is



20:38



something that gives us a bigger a



20:40



bigger distinction if this is going to



20:42



be a diagnostic test then it has this it



20:47



has to separate out all of the patients



20:49



from healthy controls and then of course



20:53



we're setting that up so that when we



20:55



start running other diseases which we



20:58



are getting samples for that now we want



21:03



to look at the different technologies



21:05



and how they differentiate between



21:08



chronic fatigue syndrome and the the



21:11



other diseases but the problem we have



21:15



is that chronic fatigue syndrome is



21:17



initiated by a stressor and having



21:20



another disease is a stressor so it



21:24



raises a problem in the sense that if



21:26



you have MS which is a pretty bad



21:28



disease is it possible that you also



21:31



have chronic fatigue syndrome and that's



21:35



pretty much dismissed by the physicians



21:37



because they even dismiss chronic



21:40



fatigue syndrome from a healthy person



21:42



yes you know but so when I've talked



21:45



with them it's kind of they say well you



21:47



know it's very unlikely they have two



21:49



different diseases at the same time but



21:52



they're kind of similar in many ways and



21:55



and certainly the MS patients had



21:58



fatigue and they say well it's the



22:01



fatigue caused by the MS



22:03



yes so it trying to do this experiment



22:07



and see how other patients behave is a



22:11



little complicated



22:12



yes it's not so complicated if they MS



22:17



patients don't show a signal but it is



22:20



complicated if they do yeah no that



22:24



makes sense because I think a lot of



22:27



people know already but obviously we rub



22:29



red blood cell deform ability isn't



22:32



something found just in you know mecfs



22:36



so far it's being found in you know lots



22:42



of lots of diseases so yeah so they



22:49



they're working simultaneously obviously



22:53



on this device but are they are the team



22:55



looking into ways to possibly with the



23:00



data they've got so far any any drug



23:02



targets or is this a little bit too



23:04



preliminary yeah we haven't sent that up



23:07



we want to we want to change the device



23:09



so that we get a bigger effect on the



23:11



deformability so that the new device is



23:14



smaller the channels are smaller it



23:19



causes the red cells to be stretched out



23:22



a lot more and we need to improve the



23:25



imaging analysis so because we want to



23:30



be the problem is that as your cells



23:32



move through this channel they got there



23:34



pretty fast it if it sort of snares out



23:40



because of the picture isn't taken fast



23:44



enough



23:46



it makes it makes our accuracy low so we



23:50



really have to greatly improve on the on



23:55



the imaging and then we have to make



23:56



sure that that imaging analysis is



23:58



automated in the past it wasn't



24:02



automated and it took hours of effort on



24:04



each sample to get the numbers we also



24:10



wouldn't want to decrease the variance



24:12



and



24:14



one way to do that is to have the seller



24:17



go through multiple constructions then



24:21



measure it multiple times and then take



24:23



the average and then that may taken up



24:27



the distribution and therefore the



24:28



accuracy yeah okay that makes makes a



24:34



lot of sense it's it's coming back to



24:38



this constant theme of being on the



24:42



razor's edge of science again creating



24:44



the I mean I can't really imagine how



24:48



complex the device on that is but yeah



24:52



just to be able to do that it's not



24:53



exactly it's not an established medical



24:56



tool is it so no it's a again kind of



25:02



creating creating all of these things



25:06



for biomarkers which is fascinating but



25:10



um yeah it would be nice if they existed



25:13



already in some ways yeah one of the



25:22



other things that it's very recent is



25:25



the board members so obviously there's



25:27



been a few new board members I think



25:30



there's hopefully pronounce their names



25:33



right there's Jennifer Frankovich Daniel



25:36



Peterson who's an MD I think Jennifer



25:40



Frank which is an MD as well and then



25:42



yeah she is and then Michael Schneider



25:47



who I think he's obviously a PhD but I



25:50



think people will recognize his name



25:52



somewhat from prior talks you know big



25:59



data analysis and other and looking at



26:01



other diseases he does a fair amount



26:02



with similar kinds of diseases he's also



26:09



interested in chronic fatigue syndrome



26:11



he's thing about and he's been coming to



26:13



our working group meetings and he shows



26:15



a lot of interest and we're using some



26:18



of his facilities so he's in the same



26:20



building that's another advantage so



26:22



we're on the first floor he's on the



26:24



second floor yeah and so and we agreed



26:27



when we moved in



26:28



which air facilities so that we didn't



26:30



have a lot of duplication yes



26:35



sounds sensible I don't know how it



26:38



works but that that sounds very sensible



26:40



I mean in terms of them joining the



26:45



scientific advisory board the reasons



26:48



for them joining it is it obviously it's



26:51



different for each person but I don't



26:53



know if you can



26:53



well the Dan Peterson is a lot of



26:58



experience with the disease you know



27:01



he's not he's in Incline Village area



27:05



yeah



27:07



that's not too far it's a drive and you



27:10



can you don't have to comply if you



27:12



don't want to so it's useful to have him



27:20



because if he's a lot of experience for



27:23



the disease and in fact we've talked



27:25



about a number of projects that we might



27:26



do in collaboration a lot of that is



27:29



with his samples and he's been trying



27:31



lots of things as well so there's a lot



27:35



of opportunity there and also giving his



27:38



vast experience and making suggestions



27:41



of what to try yeah he's quite a



27:45



well-established well very established



27:48



name I would say in the AME community



27:50



from and we had David Bell and that we



27:53



can still connect today of a Bell by



27:55



phone but he's really too frail to



27:58



travel anymore so he really can't come



28:01



to our meetings we can't keep him posted



28:04



but we don't really give him any work to



28:06



do yes so he's sort of a replacement for



28:10



David Bell



28:10



but David bells not off I mean just that



28:13



he really can't help us as much that's a



28:17



shame because yeah yeah David Bell is is



28:21



quite hero and there and very



28:25



knowledgeable and also experienced yeah



28:29



and Jennifer is at Stanford and picked



28:33



her because she knows a lot about



28:35



chronic fatigue syndrome but she also



28:38



works on pans



28:40



there's a lot of similarities and tried



28:44



lots of things and it's also my feeling



28:47



is that we really need to learn from



28:50



other very closely related of the



28:52



diseases and and it may give us an idea



28:56



of how to other types of experimentation



28:58



to do or also possible treatments that



29:03



in the case of pans I think they they



29:07



they discovered it a little bit earlier



29:09



and so she's tried a number of



29:13



treatments that had been successful when



29:16



when the patient hasn't been sick for



29:19



very long okay so they mostly and she



29:23



runs a fan's clinic she has two patients



29:29



we will probably plan to evaluate some



29:33



of those patients but some are



29:34



techniques that we've used done I'm



29:37



gonna miss you first see what the



29:39



similarities and differences are yes it



29:43



s that's kind of similar to ms perhaps I



29:48



may be well off base with that but in



29:50



terms of looking at the similarities



29:51



between fatigue between conditions and



29:54



seeing if there's you know that there



29:58



could be one central player for fatigue



30:00



or you know a certain number of similar



30:03



or the same mechanisms between different



30:06



diseases so we we do plan now to do some



30:13



collecting data on patients with



30:15



fibromyalgia and chronic Lyme and



30:21



but we have to raise money from those



30:23



communities we do not want to use money



30:27



donated by from chronic fatigue syndrome



30:31



patients and caregivers and so forth



30:36



there do research on our different



30:39



disease yes so the financial stuff will



30:44



get compartmentalized



30:47



we do have some donations from chronic



30:50



Lyme so we will do



30:54



we're setting up a collaboration with



30:57



bill Robinson who's also he's an



31:00



otologist so that adds another person



31:02



yeah it's an MD and he gets samples from



31:06



the East Coast there are organisms and



31:10



on the west coast but they're slightly



31:11



different yeah and so we will be using



31:15



samples flowing in from the East Coast



31:18



for chronic Lyme okay and see how that



31:22



compares to the mecfs Duga yeah that's



31:26



very interesting that's pretty good yeah



31:32



very interesting I think it's um I I



31:36



think I'm correct in saying that the



31:39



just to talk about funding very very



31:42



briefly that the CRC the new Research



31:45



Center



31:46



well that was fully funded by our MuRF



31:49



by patient donations I'll tell you which



31:53



one would like that the we've Jonas



31:56



Bergquist a top seller with that funded



31:59



by patient donations for I've gotten



32:02



some patient donations and from Sweden



32:06



and that's all go to him yeah we'll try



32:10



to get more that will then go to him



32:12



yeah but Linda is really Lauren charge



32:19



of all the how much we have been wearing



32:23



we should we we should put it and what's



32:25



gonna come with the Advisory Board



32:27



talking about it yeah yeah that makes



32:32



sense okay I guess this is the last



32:38



question I've taken Mike Schneider so



32:41



although we have shared facility yeah we



32:44



ain't problem should do something



32:46



together so one of the projects we've



32:48



been discussing is trying to develop a



32:51



wearable device like a watch yeah that



32:55



collects data from the patient and we've



32:58



had we both have quite a bit of



33:01



experience in that field with some



33:02



different points of view



33:05



and the goal is really to have a



33:10



measurement so that we know when



33:12



patients have gone to their their limit



33:16



and before they crash tries to try to



33:20



make that make it so they don't crash



33:24



yes so incredibly helpful yes so is that



33:30



something that would measure potentially



33:32



something like lactate or so we could go



33:36



with biochemical that's or kind of



33:38



things that we have done it also be a



33:41



very sensitive vise measuring heart rate



33:43



variability and there probably is a



33:48



signal in in that as well they'd like to



33:52



tell you that there's a there's at a



33:55



level where they're starting to get



33:57



physiological change Mike has had some



34:01



success with that with some other



34:03



diseases and predicting before there's a



34:09



damage it's been done in terms of this



34:13



is just me being really nosey now but is



34:16



that in terms of heart rate variability



34:18



you were talking about then or just



34:19



generally heart rate and a number of



34:25



things you made your temperature and you



34:28



get a change in temperature it's very



34:30



subtle but you have 10 a high accuracy



34:33



for this so most of the devices are not



34:36



attic adequate the Fitbit the Apple



34:40



watch those are not adequate the



34:42



accuracies are not high enough so you



34:45



need much more complex device that



34:48



measures how high accuracy we're going



34:50



to look into the the lock a possibility



34:54



okay that's another possible way to do



34:57



this that would probably be done from



35:01



sweat that's the simplest thing to do we



35:08



could problem there are ways to which



35:09



you can do continuous blood monitoring



35:12



putting a needle most tiny tiny nano



35:15



needle into this under the skin



35:18



yeah but sweat is also very very



35:23



sensitive hasn't been looked at in in



35:26



the patients yet when we can induce



35:30



sweat electrically and so we the part of



35:35



the patient does not have to be



35:36



physically active just to cause the



35:39



sweating this can be done from someone



35:41



who's you know even in bed yes it's not



35:47



painful or anything of that type it's



35:49



just it's a little bulge that can induce



35:52



we've worked out the methods for doing



35:54



them because uh yeah I was gonna say not



36:01



necessarily that relevant but I know



36:03



that a lot of any patients don't seem to



36:05



sweat right like they used to



36:08



don't exercise them well either yes the



36:11



other correlation appears that if you're



36:14



you're in very very good shape you sweat



36:17



one so they not sweating is actually a



36:20



sign that you're not in good physical



36:22



shape yes I did I don't know that that



36:26



is but then we've seen that in are



36:28



trying to do this wedding people sweat a



36:31



very different in the amount of sweat



36:34



which is what made us focused on trying



36:36



to figure out how to electrically



36:38



stimulate the sweating so that they



36:41



didn't require our activity yes



36:44



yeah I think I read a paper very



36:46



recently actually if something about



36:48



some people can very healthy fit people



36:53



can sweat up to two liters a day which



36:55



seems in the obscene amount yes so we're



36:59



we have a device that has been being



37:03



tested out now is to measure their you



37:05



have malice worth is that the amount of



37:08



sweat that could very well be a good



37:11



indicator of physical fitness



37:14



yes yeah I know for myself being being



37:21



bed bound I don't think I've sweated



37:23



properly in about five years



37:26



it's a very very likely yes yeah which



37:30



has its



37:32



and cons I guess but I'd rather be more



37:36



healthy and sweat more okay I won't take



37:41



of it hardly any more of your time I



37:44



hope I just wanted to talk about the



37:47



focus over the next few months so we've



37:49



got the London boy we've got millions



37:52



missing and we've got the London



37:54



conference yes right and then there's a



37:58



conference next week well this week in



38:02



the end of this week at NIH okay that's



38:08



I don't know how broadly that's attended



38:13



by international people but they're



38:14



certainly welcome it's only a two-day



38:17



conference so it's a little bit small



38:20



okay I think it's I think the



38:23



participants is around 300 okay and is



38:27



that for it's that for kind of I mean



38:29



that's that's passed me by that one



38:31



unfortunately I don't know anything



38:33



about Barbara is that basically faked



38:36



for input in terms of just just



38:42



gathering people's input for their own



38:46



studies or is that supposedly they're



38:49



going to do a little bit of their own



38:51



study but I think it's gonna be pretty



38:53



small I thought they were gonna do more



38:56



and that's why I was excited about



38:58



seeing what they were doing but I think



39:00



it's a I think it's a fairly small



39:03



amount okay okay I felt less interesting



39:08



and obviously you you'll be a invest in



39:11



any conference yes the plane - yes



39:16



speaking again like as per usual well



39:20



hopefully we'll have more data on the



39:21



metabolic travel



39:23



yeah which will be exciting okay I guess



39:29



that's about about it really well I



39:34



should probably leave you be and stop



39:38



interrupting your Sunday evening



39:41



afternoon evening thank you for being so



39:45



gracious



39:47



and Janet as well I know this was



39:49



extremely short notice so yeah I'm very



39:54



grateful that you you took the time to



39:57



do it for us well there is one other



39:59



area I could just briefly mention and



40:02



it's it's kind of a new area and that's



40:07



more from looking at sort of an



40:09



environmental engineering perspective



40:11



and we now have a professor that's



40:16



retired at Stanford and environmental



40:19



engineering and he would like to come



40:24



and I think join us just to be part of



40:28



an activity okay and because we're



40:32



seeing things like mercury toxicity and



40:37



the patient's about a third we're also



40:40



seeing uranium and in the patients and



40:44



mostly from California



40:46



we don't know where that's coming from



40:47



or the consequence of that and that



40:53



person will help us maybe with some of



40:55



the mold experiments somebody may be



40:57



wanting to do for some time there's just



40:59



a lot of complexity and exactly what to



41:01



do so the things that we're thinking of



41:05



looking at is of developing DNA probes



41:10



for all the molds if they're in in the



41:15



body similar yeah and then the other one



41:19



is looking for a collaboration where



41:21



they can detect the the mold toxins that



41:25



was something that we wanted to do for



41:28



the severely Arab patients that never



41:33



happened because of the the company that



41:36



was going to do it's just went on a



41:40



business and it's ideal replacement for



41:45



them yeah and there are a number of



41:48



people that are trying to do that and I



41:50



don't we don't have to reinvent the



41:51



wheel if they can find someone who can



41:54



looked over the presence of the taxes



41:56



and the patients



41:58



yeah so just quit just very quickly that



42:01



the I know mercury is quite a big thing



42:03



in the CFS community and so is obviously



42:06



mold but for mercury I presume again the



42:10



this is hair testing isn't it this is



42:13



all hair testing percent we worry about



42:17



the validity of that the value of the



42:18



hair testing is it's pretty painless on



42:22



the patients and patient anywhere in the



42:25



world can send us a hair sample and it



42:28



doesn't have to get refrigerated and put



42:31



it in an envelope and mail it right so



42:34



and it's very simple what we don't know



42:38



for sure is the validity of the hair you



42:42



have to worry about contamination of the



42:45



hair but it's out there and getting



42:47



interest so if you guys something high



42:50



you have to worry about contamination if



42:54



there's contamination with mercury I



42:55



think that's still a problem that means



42:57



a person was exposed to mercury so that



43:00



one doesn't bother us so much but if you



43:01



look at things like copper and tin zinc



43:05



and other metals that might be in the



43:07



environment then we have to be careful



43:11



yeah okay well I believe you be to go



43:18



and hopefully enjoy your afternoon so



43:21



we've had some meetings with Eric with



43:23



Eric Johnson about that and we've



43:25



actually visited him and he's a person



43:28



that will help us the mold I don't want



43:33



to call in the mold guy but the Sun



43:37



comes select appearance and we always



43:40



like to gain the experience from the



43:42



patients sometimes they don't use the



43:45



rain scientific terms sometimes they get



43:47



this understand some of the scientific



43:50



background but you've you listen to them



43:54



and you try to figure out what it is



43:57



that they're experiencing and they take



44:04



them seriously enough that you need to



44:06



if you're going to dismiss it you should



44:08



dismiss it because you can't find any



44:10



evidence scientific it



44:12



and testing that it's there so until you



44:16



do that you have to listen as and there



44:19



very well could be the the the the mold



44:22



toxins the mic effects is that they



44:26



produce are unbelievably powerful and



44:28



very scary



44:29



so the aflatoxin is the most mutagenic



44:36



compound no one and so that there's an



44:41



incredibly powerful and there's a reason



44:43

