ME/CFS and Related Illness: Putting it All Together


hi my name is Robin want to welcome you to the Bateman or Center or monthly education broadcast tonight we’re pleased to have dr. Nathan Holliday an internal medicine specialist and solo practice has a focus in treating illnesses involving severe chronic fatigue and white spray painting he’s a member of the NIH CDC NBS CFS that’s a mouthful clinical data element working group you can apply with additional information on dr. Holliday and Holliday MD dot-com / bio he grew up in Longwood Florida his bio chemistry degree master’s degree at Brigham Young University an MD and the PhD molecular biophysics from the University of Texas Southwestern in Dallas he had an internal medicine residency affiliated was East Carolina University and as a clinic assistant professor of general internal medicine with East Carolina University physicians instructed residents and faculty members on evidence-based medicine he’s treated by Jose Canseco myelitis in chronic fatigue syndrome and fibromyalgia has a position with the bateman orrin Center in Salt Lake City prior to starting his solo practice is also an adjunct assistant professor at the University of Utah he continues to be a member of the mecfs working group for NIH alright well for sound purposes I might be sitting here most of the time but but thank you all for coming and thank you all whoever is participating online I appreciate this opportunity to talk about something that has really been both kind of near and dear to my heart and also from just a medical standpoint just a fascinating area to work in my goal and my hope is that for those who are those who are patients or family members of patients what I’d like to do is take a step back because so often digging into one little area or the next and I want to take a step back and and I’ve had the opportunity over the last about one and a half to two years to really come in as kind of someone new to this area and have to go through the process of looking through all the research evidence all the data sorting through all the stuff is you all probably know you find all kinds of things online and sorting through all of that and filtering out what is really what are some kind of the really key aspects when we look at this illness these illnesses from a standpoint of what causes them what do we do about them and so I want to kind of put together present the picture that I’ve put together in a nutshell and and I can’t really dig deep because I’m trying to go broad so I’m gonna have to move through things quickly but I hope still that kind of taken the panoramic view will will will be an enlightening in one way or another so I’ve I’ve focused on Emmy and chronic fatigue syndrome I’ll check encephalomyelitis and chronic fatigue syndrome but also there’s so much overlap between other illnesses like fibromyalgia that I want to it some of this definitely kind of applies and it challenges actually our way of looking at illness and I’m going to talk about that because I think that’s been part of the big difficulty in terms of making progress both clinically and in research you almost have to look at it a different way than we usually look at illness so here I just put out some myths and some realities so obviously one huge myth which hopefully is being mostly dispelled is that the illnesses are that these are primarily psychosomatic things yeah and I could hardly be further from the truth another issue is that there’s another myth that there are no objective for these illnesses that’s that’s not a uuu here it said even almost in the end the third one is there’s no there are no effective treatments now on an individual case-by-case basis sometimes that may apply to some degree but in reality I don’t really like that statement either either and sometimes you even hear it from from the community the reality and these illnesses are very organic very they’re not psychological illnesses there are definitely objective findings that can be found and and the majority of patients or and a lot of patients but the thing is that the objective findings can vary now that may be changing somewhat and the other thing about treatment is it’s not that there’s no treatment but there’s no one-size-fits-all treatment at this point so I’m going to spend a lot of time talking about the pathophysiology and that is basically what makes the illness tick what are the different underlying problems with the body that that that go on and I put this little quote make new friends but keep the old you may be familiar with the rest of the phrase but this part is pertinent because we have some new things that come are coming out which are very fascinating very important but then there’s also some older data that I almost worried that we’re kind of leaving on the side right now and those involve in particular data relating to associations with infections and so forth and I think you have to put kind of everything together in order to to put a full picture together so research shows that these illnesses in a particular will say Emmy and CFS their associations with with infections there are differences in brain imaging there are laboratory differences there are physiological studies that have showed differences between patients and healthy individuals like tilt table test in and xers testing so it’s just a myth if you say there’s no no evidence for physiological differences or so forth that’s totally false so I’m going to go through some break it down into different areas and I’m gonna start with the area of infections so most people would that’s one of the first things we would think about if we think about what causes the illness we think about infections because we know that a large number of cases start with an infection but the problem is when you start to look at this studies I you don’t find a consistent positive result when you’re looking at associations with infections so then that throws throws you for a loop it becomes confusing well if infections are part of the cause why why then don’t we see any difference between the blood levels of normal individuals and patients in terms of measurements of infections what’s clear this there’s not one particular type of infection for the for mecfs in general there was a study where it showed that the it looked at three different illnesses and all of them after about six months developed a chronic fatigue syndrome type picture at approximately the same rate ten or twenty percent so there’s not one particular illness at least for the broader some people argue that severe Amin is an enterovirus driven process and I don’t know if I can say yea or nay to that exactly but what I’m going to do is kind of give an overview on infectious connections so here commonly associated infections include the herpes viruses they include the intro viruses and they include certain types of atypical bacteria we might call them and there’s some common themes in terms of those infections that we connect to these illnesses the common themes are number one most or all of these pathogens most are all of these viruses bacteria most of them can hide out in the cells for long periods of time often like years to a lifetime another common theme is most of them if not all can get into the brain and and can camp out there in the brain that’s important you think about those two facts and and then you start to think well that that might explain a lot of things but the thing is we have to be careful because we we can tell now that it looks apparent at least to me from clinical practice from looking at the research and everything some symptoms come directly from infectious processes and some of them if the infection was a trigger are only indirectly related to the infections so I want to kind of distinguish the difference between an active infection and a latent infection okay active infection is what you normally think about when you get sick when you come down with a cold when you get skin infection the virus or bacteria or whatever is actively spreading itself trying to spread itself and your body’s actively fighting that back and so here’s an example of a virus you’ve got you’ve got that on the left you’ve got a virus entering a cell and then the virus hijacks the cells machinery and makes the cell turn into a virus making Factory and then the virus will leave the cell and go spread to other cells and repeat the process that’s how viruses do their dirty work at least in the active infection stage now there’s also though a latent infection type of infection and and that is when the virus may go into the cell but then it doesn’t destroy the cell instead and what it does is it says I’m going to camp out here I’m gonna stay here for a while probably the best-known example of this is the varicella-zoster virus even though it happens in all kinds of cases and this is something that’s not obvious to us as doctors a lot how much this actually plays a role in illness but the more I go along the more I see this plays a big role in illness not just mecfs but other illnesses too but what what you see happening at so varicella-zoster virus you you know you get chickenpox I mean you know but before we vaccinate we get chickenpox when you were five for example and then when you’re 65 you get the shingles so the virus was actually there the whole time it didn’t ever totally leave the body and in the meantime is in its latent form so so anyway and with these latent viruses or latent infections the thing is by calling them latent we might make the mistake of saying they’re not active at all they are that’s the thing and it looks like they can be somewhat active but they fly under the radar and and when it’s in its latent phase it’s harder to treat alright so herpes viruses herpes viruses are one class of infections involved in mecfs as I said before they can certainly common themes are they get into the nervous system they a lot of them can also infect immune cells they have active and latent stages and in terms of the immune system for example one study looked at people with MS and normal controls but even in the normal controls several multiple ones of these viruses these herpes viruses herpes simplex varicella-zoster epstein-barr hhv-6 they were found in the brains of normal supposedly normal individuals a fair percentage of the time so this isn’t something that’s limited to two mecfs or related illnesses so so what’s the connection because a lot of people have these viruses in their brains and don’t even know it so some studies have shown different percentages of viruses but then other studies have not replicated that but we do know it’s very clear in the clinic someone comes in they say I got mono I had a blood test it showed it was mono and I’ve never been the same sense so sometimes it’s very clear that there is a connection another thing we know is from anecdotal evidence that some patients respond to antiviral treatment so that’s evidence also that the virus is actually probably doing something in there also in fibromyalgia there there’s now been some work on developing a combination of an antiviral medicine and celecoxib now this is a patented process and so it requires permission to use it but a doctor Pridgen has been working on that and and it’s interesting so this is it looks like there’s a viral process going on in a lot of those cases as well however this is a figure which is the references cited there by Lobo at all and if you look at this figure and I’m not sure if I okay so if you look at this figure if you look kind of the two left columns the far left column it looks at antibody levels of healthy controls and then the next column next to it looks at chronic fatigue syndrome and if you look at those you don’t really see a huge difference between healthy patients antibody levels to epstein-barr and chronic fatigue syndrome patient levels abstain bar so that really throws kind of a damper on the idea of oh we can show a clear increased viral effect from say epstein-barr whatever so then then that adds some confusion well what really is the virus doing and how often is it really playing a role but again as I said there are treatments for herpes viruses when they can be connected to the illness problems are there’s really limited research so I go in as a doctor I see someone who I think could maybe have a herpes virus involved number one I don’t have good tools to confirm that diagnosis number two I don’t have good clinical studies to back me up to get insurance to pay for it to tell me for sure it’s going to be safe all those things so there’s a lot of challenges with with that so the next class of viruses infectious organisms that’s big in the mecfs are the intro pharmacist now not all of the intro viruses have been connected the I’ve just listed different types of intro viruses but some of them for example Coxsackie B for seem to be connected and intro viruses as their name suggests get into the stomach and intestines often but they don’t stay there some of them are pretty nasty critters and and so when a person say gets viral meningitis good chances in inter of ours if someone gets myocarditis a heart infection good chance it might be an enterovirus enterovirus can get in the muscles and very interesting ly yeah there there was there’s some now some very limited evidence connecting it directly connecting it I I think to mecfs but there’s evidence that it can get in to the brain so that could explain some certain things and severely ill patients so the problem again with enterovirus is is you can’t really make a direct diagnosis so you kind of have to go based on okay what what’s the story of the patient’s infection that kind of set this off if there was one and there are some blood tests but E and it suggests that if it’s a high level that it’s connected but but you can’t really prove it directly and the thing is even if you could you can’t do a brain by biopsy that’s that’s really the big problem in honor this is if we could do brain biopsies I think we have moved a lot farther along but that’s kind of a challenging procedure for patients so so right now there really no ideal treatments for inter viruses so in the cases where we do really think there’s an enterovirus involved unfortunately there are problems with the treatments they’re either not fda-approved or haven’t been clinically studied there’s one called plaque on oral they tried studying it for I guess I think it was the common cold but but it got rejected and I understand part of that was it caused some birth control failure and and they didn’t look at this it’s utility and severe illness and there’s some data afterwards that says there’s some utility but in order to apply this to mecfs number one we’d have to be able to do it legally and number two we would need studies to show whether it really makes a difference in those intro viral cases and we just don’t have that so there are other kinds of bacteria and other organisms that have been connected these are some of them one thing that I’ll mention though as an example a couple things mycoplasma they’ve been shown in the blood stream of people with chronic fatigue syndrome and Gulf War Syndrome at increased levels in some studies but the problem is when they tried to actually treat it it didn’t seem to make any difference now part of that due to experience with another one chlamydia pneumonia there’s experience showing that if you get the right combination of antibiotics that can get inside the cell that can make a bigger difference but that might not be the whole story it might be it seems there’s something else so you wonder is that increased infection is that a marker of the illness or is that an underlying part of the illness q fever they did a study with coxiella Brunetti which causes a chronic fatigue syndrome type picture and they did a study in the Netherlands where they tried treating them with doxycycline for about half a year and if anything it looked like on average the patient’s trended towards getting a little bit worse rather than the better on the doxycycline so again it looked like the coxiella is related but is that what’s actually causing it so that brings us on to the next part in summary on the infections it does look like in some cases the infections are actively contributing to the picture and the treating those infections might help although we don’t have ideal treatments we don’t have ideal data on treatments but there’s more to the picture than that so moving on to the moving on from infections oh one thing I mentioned in the herpes virus you know those treatments and other challenges getting into the brain if that’s a factor in and anyway so there’s more more to it so we’ll move on to immune problems so there are various immune problems that have been shown and and these illnesses I mean deficiency hypersensitivities like – food recent more evidence for possible autoimmunity playing a role and differences in cytokines there’s been some kind of a big deal made out of a study that came out from Montoya recently about cytokines so this just shows this doesn’t show the full immune system this just shows some components some of which are pertinent like your on the left we’ve got what we call your innate immune system these are the ones that that don’t attack a specific virus or a specific bacteria they’re just kind of general defenders in different ways and then on the right are your adaptive immunity or your specific defenders so on the left that went the pertinent one in particular is NK cell you’ve heard problem you might have heard that in mecfs there’s low NK cell function how is that connected I don’t know for sure all the ways it’s connected but one thing to remember is that NK cells are a first responder in illness so if the virus comes in it takes the body maybe about a week to develop a specific immune response to that virus before that weeks up you’ve got to be doing something you can’t just let it go go haywire for a week before you start fighting it off so NK cells are part of the first-line response well if your first line response isn’t very effective that could allow the virus to spread more before your body can get it in check so that’s one potential way that in K cells are relevant so going over unto the other side T cells and antibodies so one important thing is to recognize there are two arms of specific immune defenses antibodies and T cells which one do we hear more about you hear more about antibodies right well one reason for that is antibodies are easier to measure T cells are hard to measure so but there’s been some but T cells are cells that specifically attack one target those types of T’s C cells antibodies also specifically attack one target so looking at some of the data on cytokines this these are two of the big things on cytokines that Strutt have struck me I both came out of Montoya’s group I believe and on the left is the paper that we were talking about so cytokines are molecules that your immune cells make and that are used to signal the immune response so these types of cytokines are different generally things that drive your inflammation more cytokines from this standpoint generally as I understand that when they looked at more inflammation so interestingly and mild they looked at disease severity and they saw different things with different diseases uh verities so not one particular pattern of cytokines with mecfs but actually some opposite patterns so a mild disease you actually had on average lower levels of cytokines than the normal healthy individuals moderate were similar to normal healthy individuals and then severe disease had higher levels than normal healthy individuals but if you looked at another factor and this was presented this is per my recollection of their presentation that the meeting last October if they looked at early illness they found higher levels of cytokines if they looked at kind of mid stage illness more average levels of cytokines and later stage illness lower levels of cytokines which actually says that there’s a progression of the illness what’s going on early on when a patient has this illness is different and it evolves it turns into something different as you go through over several years – – and one of the things that I think is probably involved with this has to do with the infections remember we said infections aren’t the only part of it but they are a part of it and early on that infectious driven inflammation response may be higher and as the as that cools off over time or as the body fights it down that’s one mechanism there are other possible explanations for this but but it’s interesting to look that even with individuals the disease will kind of change from that standpoint most what most likely over time so Auto antibodies we started to see autoimmunity some evidence of autoimmunity some of the antibodies the main antibodies that have been identified so far that I’m aware of are ones to certain receptors like the beta adrenergic receptors muscarinic receptors which which which sense neurotransmitters signals released by nerves and but but it’s not clear whether this is a cause or this is just a marker so is that are those antibodies causing the illness or are they just kind of there one explanation might suggest they’re just kind of there because these are different they have different structures and and they’re linked to nerves so it could be a byproduct but they could also be causing some of the illness so we don’t really know there’s another connection with D UTP ACE antibodies so there’s some crossover apparently between your response to Epstein Barr for example in response to your d ut pas antibodies and it’s not clear what this would do but some thought might say that it increases the likelihood that cells DNA can mutate or that it might affect like we talked about earlier some of the energy production of the cells so I’m just speculating I really don’t know but one thing we do know is there’s a fraction of patients who respond to rituximab and what rituximab does is it kind of destroys cells that make the antibodies so 30% ish depending on on the number the problem is some patients don’t respond to protects mab and it seems like some of the more severely ill patients don’t respond to rituximab so going back to what i said for example if you’ve got severe emmy and that’s actually due to an intro viral infection in your brain do you want to be blocking your antibody response or is that you know so we’ve got to really drill down ok in a certain case what’s the picture here we don’t have enough information yet really but there are more trials going on of rituximab and they’re really trying to find out how to identify who’s going to respond to to the rituximab t-cells remember I mentioned t-cells don’t get as much attention but there was evidence presented recently that t-cells look different in Emmy and CFS and this could mean that increased numbers of specific strains of t-cells could be due to a response increased response to the pathogens it could be an autoimmune response it could be both we’re still waiting to hear the word on what t-cells are doing so that’s the immune part of our pathophysiology I’m going to move on to the mitochondria metabolic endocrine part of the pathophysiology and some really interesting things have come out in this lately too so several studies I’ll start out with several studies have shown mild endocrine abnormalities and interestingly I’m on the neuro endocrine I’m the committee of the chair of the neuro endocrine clinical data element subcommittee here and and looking at this question I think what’s evident is that hormones are not a primary cause of the illness so much as abnormal a mild abnormalities and hormones kind of being an effect or a marker so they do contribute to the disease process but they are not the fundamental cause your thyroid hormone is not causing your illness okay something else it may be contributing but it’s not the primary cause also we know that patterns of small molecules in the blood are different the metabolites you find in blood and there are problems with energy processing and I think there’s I don’t fully understand the differences in those metabolites but it seems that there’s a connection to this energy processing problem so looking at the energy processing problem one thing we know is if you put people on a treadmill with mecfs especially the more severe illness on average you don’t do as well surprise surprise so one of the things is that people can especially in a more severe side can reach what’s called the anaerobic threshold with less work and the anaerobic threshold is for example you kind of think it about it with regard to weight lift and where do you go to the point from the point where your cells are using oxygen to the set to the point where the cells don’t get enough oxygen so they just have to quickly break down sugars in completely and build up acid and so forth so you can kind of detect where a person’s anaerobic threshold is with this exercise testing and it takes a lot less biking in some patients to get to that anaerobic threshold where all of a sudden you see a change and their metabolic activity than it does a normal person which implies a problem with their energy production another very interesting thing this is I think one of the most fascinating one of the key points in the whole look at pathophysiology Ron Davis talked at the recent open medicine institute meeting and he talked about data and it seems like I’ve seen heard somewhere that maybe there’s someone else who’s done similar work but I haven’t seen what that is but anyway he described a very interesting study where they had a way of stressing individual cells and they could look at the cell and see if the cell was able to keep up with stress or not and so they stressed sick patient cells and healthy patient cells and healthy patient cells did fine sick patient cells of course did not but when they put the plasma the fluid from the blood from healthy patients over the sick cells they the sick cells start doing better when they put the plasma from the sick patients over the healthy cells what happened the healthy cells got sick that is a fascinating finding it says there’s a factor in the plasma that that is actually making cells sick you you’ve got toxic plasma you know in some cases and he also said something that I think was important he made a little side note this seems like this is the case both in mild some more mild and more severe illness so this is kind of looks like a common theme among a lot of patients that’s important because there’s a lot of heterogeneity a lot of differences so so and but they and they boiled it down to the factor looks like it’s a large molecule so he suggested it could be an antibody going back to that autoimmune type of thing that we’ve talked about it but they haven’t pinned it down or they at least they haven’t reported that they’ve tended down yet to my knowledge okay moving on from energy to the brain and the nerves so once again if we are looking at objective abnormalities that have been found in research they get totally mythical any idea that we have not found significant objective evidence of pathophysiology the problem is just that there’s a lot of variation but we’ve seen abnormal blood flow and the brains patience we have unfortunately I told you before getting those brain biopsies it’s just just a problem both so it’s too bad we don’t have more of that evidence but some very limited evidence is present in that that does seem to confirm the idea that there is like microglial activation or in other words kind of in increased inflammation within the brain one case report came out recently that mentioned Alzheimer’s like changes and other micro structural abnormalities that were pretty significant I don’t know that this applies to everyone but those who are in a huge fog all the time with the extensive hypersensitivity and so forth might not be surprised if things were pretty discombobulated if you when you look under a microscope so again this this is a single case report doesn’t necessarily reply to we don’t know how it applies but you know not not too surprising and then other brain problems like hypothalamic abnormalities your hypothalamus controls things like sweating and thirst and appetite and you get changes to those types of things and and mecfs and does vary from patient to patient but it’s kind of depending on which part is affected or inflamed or in fact it would affect it whatever you get various abnormalities along those lines so this was kind of data taken from a study I cited here’s Schwartz at home in 1994 when it showed is that if they did a scan of that looked at the blood flow in the brain that they would found that in healthy patients he had on average one to two areas of limited blood flow and major depression and chronic fatigue syndrome he had six to seven on average but that widely varied and an HIV dementia he had even more a difference so between major depression and chronic fatigue son was so clearly some validation for those who have major depression as well right but one difference between the chronic fatigue syndrome a major depression is the overall kind of I guess in the middle of the brain some index of more overall flow seem to be higher and major depression and lower and chronic fatigue syndrome says this would suggest that overall there’s lower blood flow in the brain in chronic fatigue syndrome patients on average there are also circulatory problems some patients have been found to have low blood volumes study looking at neroli immediately hypotension show that the majority of patients had would sink up eyes or get neuro neroli would pass out you know if you stay on a tilt table for long enough a lot of patients have pots which is when you get symptomatic when you’re standing up and you get dizzy and your heart goes up by 30 beats a minute or more and there’s that’s important because that’s something you can actually kind of treat to some degree a lot of the time so I when I went through a lot of different I went through infections immune things metabolic abnormalities circulatory brain abnormalities now how do these connect to symptoms so one thing is that that different symptoms you have to remember the different symptoms like ESADE the the word myalgic encephalomyelitis one concern I have true actually in speaking of the enterovirus model inter viruses can get into the muscles and that might cause myalgias and of course there are other things that can cause myalgias but not all pain is myalgia there are lots of different types of pain and mecfs patients and fire fibro and others but you got to really look what type of pain are you experiencing where it’s coming from because it’s not all the same other symptoms are kind of the same way so they’re actually there’s actually it seems like no one single cause for each symptom so you got to also kind of look at what pattern does it follow and what multiple factors could be causing these sometimes in a given patient so for example the bodily fatigue lots of muscle fatigue weakness as president especially after exertion so the the energy processing abnormalities the fact that your cells can’t make ATP as well that’s an obvious cause muscular blood flow problems so this would be a cause potential cause and inflammation impaired you know different potential causes for that bodily weakness that the people are experiencing the cognitive symptoms those are a big one the neurological symptoms the hypersensitivity the this this is major this is huge we talked about things that can be going on directly in the brain infection in the brain is probably playing a role in a lot of people there’s actually stuff you know that would make you feel bad right if there’s enough of that going on that and cause some of these different things also inflammatory responses related to that but also related to other factors in the body also this idea that your cells aren’t using energy well enough well what if the cells in your brain also don’t process energy well enough that can also that can also potentially affect your the the brains functioning there could be possibly some direct autoimmune effects may be if those muscarinic receptor antibodies or so forth are affecting brain tissue so there are a variety of things that can be causing these severe cognitive and brain related symptoms that are common to these illnesses also degenerative effects I am concerned that probably if we looked at brains over time you know all this stuff going on they don’t they don’t go without damage over time you know their changes I’m sure that occur in the brains that are just the result of kind of the constant beating that they’ve taken and so orthostatic intolerance another major symptom that’s basically symptoms you get with that are worse with positions and so multiple potential explanations for this but the way I look at it now is I see two major things number one you can get those circulatory problems like pots but even if you have high blood pressures even if you don’t have pots or anything like that you still have worth of static symptoms and I think the way I’ve put it together it’s part of the reason for that is probably because the brains are already messed up and and there are they’re going to be more sensitive to pressure changes than a normal person’s brain and so you’re just going to feel you’re more likely to feel it partly just because of intrinsic problems to the brain and partly because of circulatory problems now if we identify a circulatory problem we can do something about that harder to do something about those intrinsic problems in the brain but you can measure it and depending on the circumstances say if there’s pots or something like that certain measures to help with the orthostatic intolerance may help I use this this frozen popsicle analogy okay bear with me follow me now all right so so imagine you’ve got an unfrozen frozen popsicle you know and and you lay it on its side okay so this represents your body alright and and if you lay it on the side the fluid inside that popsicle is this is an example I’d frequently give the fluid and the popsicle is evenly laid out right now what if you’d stand that popsicle up especially if it doesn’t have a lot of fluid in it mmm look where’s the fluid more there the fluid pools at the bottom and less at the top and so look at where your heart is your heart can only pump as much blood out as is coming in so if if there’s a big fluid shift your heart’s not getting enough blood what does it do it may speed up that’s a big part of where you get pots it’s all of a sudden going crazy trying to pump because it’s not getting enough fluid back so what can you do about it well one thing is you can squeeze the popsicle at the bottom right if you squeeze the popsicle at the bottom what does that do push the fluid up and that’s kind of concept between like the waist high compression stockings and so forth they got to be tight enough to actually push fluid up them another thing is you can you can sneekly do do something else you can add more fluid to the popsicle right and and that will also make it pool less and get more fluid up to the heart level and the way and that is kind of the hot concept between a combination of salt and water sometimes flirted cortisone but it really depends on the patient like I said not all patients have this issue so you’ve got to determine whether that’s an issue or not before you start doing you know taking measures like fluid or cortisone or something like that pain pain is another issue like I said not all pay is myalgia although some of it is and not all male jame come from the same thing some of it comes from effects in the brain some of it comes from tightness some of it comes from possible direct infection you’ve got other connective tissue pain you’ve got hyper that really irritable skin sometimes you’ve got neuropathic pain where pain from your nerves being damaged different kinds of pain you can’t just say I got pain if I’m a doctor I’ve got to figure out what kind of pain are they talking about because that affects thing so the way I break it down is two main causes for the pain the causes that are related to nerve later problems including problems in the brain and then tissue based causes so if your brain is sending a signal down to your muscles causing some pain or if there’s a problem in the nerves causing pain I my impression is that these tend to be more is more responsive a lot of time to the fibromyalgia type pain medications if it’s in the tissue it seems like they often seem less responsive to those things so you got a distinguish is the pain and the tissue or is it coming from the nerves so putting it all together I just I I made this little illustration and bear with me so I so let’s just take a sample patient and this is kind of because we’ve talked about a whole bunch of different things how these things all go together well here’s our guide and say they pick up a virus virus enters mouth from the food or something you know very unfortunately and virus starts dividing and spreading to the body so it may go to the stomach and start replicating there but then and it will go to the lymph node there and then it can go other places it might go to the heart and cause myocarditis it got might go to the muscle and cause muscle aches and problems it certain of these viruses will go to the brain in response to the virus your body makes antibodies some of those antibodies attack the virus but they also may attack your own tissue problem right including in the brain that in turn will cause potentially if it’s the auto antibody and if this hypothesis is correct that may cause some of the energy production problems in that case your body starts making antibodies the virus could completely go away but if those antibodies stay there and if it’s causing your body to have energy production problems you still got the the significant weakness then the virus may get in the nerve and cause pain it may get in the effects on the brain may also send signals from the brain to the to the muscles causing pain the effects of the virus directly in the tissue like in the muscle may cause pain so you see all these things start to actually there they really are connected even though they seem like a bunch of different parts that are and this is just a simple example it doesn’t apply to every case but but that is just showing things are connected that way so whatever that a very interesting thing is that I’ve seen you know is it really seems like once you start to think about things this way with like Emmy or chronic fatigue syndrome you start to see I see in five miles a lot of cases where looks like similar processes are going on the brain infection type of process I highly suspect in some cases other types of processes you just might not because pain is the more prominent but you still got the other things you might not have have as much as say the energy production problem so so what what you look at and the other thing is that ms lupus polymyositis it’s an autoimmune disease of the muscles interesting thing though it’s been connected I believe to enterovirus so you can get enterovirus without that autoimmune response get ME enterovirus with that response and be diagnosed with polymyositis so there are a lot of illnesses out there where we could learn lessons from what we’re learning from these patients so we really have to challenge the way we look at illness different individuals you know you should you know if you’ve been if you talk to many people you’ll know that everyone has there’s a lot of similarities but each person has their own set of issues their own things to deal with and and and I started I almost because there’s such variety it’s been part of the reason why we’ve had so difficulty so much difficulty pinning down an impending – even pinning down dying – excuse me diagnosis because there’s really it one thing blends into the next blends into the next you can’t really draw a line and so I’d kind of mentioned here one way to look at it might be to you know the salad bar model of illness versus the platter model we’re used to having the platter model of illness and an example would be okay well here’s your type-2 diabetes on a plate and would you like for a dessert would you like an mi would you like a disease or would you like kidney disease to go with that okay that’s kind of how we’re used to looking at el nosotros in this area there seems to be a lot more mix-and-match of components mixing the infection that autoimmune the different things and one person may have the infection with say a certain autoimmune component and another person may have an infection without but so so we’ve got to start thinking about illness different a different way and if we looked at it this way I think we’d have less problem less less difficulties was just debating over okay how do we define this or whatever how do we treat we need to look at that also when we’re developing treatments what we need we need information to help us diagnose the illness I believe that tissue studies would be really helpful we’re talking now a lot about molecular stuff we need to not forget there is a role for infection we need to not forget there are actual structural changes and other changes that are going on in the tissue that you can’t just get through looking at molecules and the cerebrospinal fluid or the or in the blood we need we need we need clinical trials of treatments it’s a hugely challenging when you have to do a lot of your treatment based on hearsay that’s not how medicine works and if we want doctors to get better involved and to and it and if we want to be able to treat people better we need to understand the treatments well enough and that means we need clinical trials of treatments and we already have leads for clinical trials yes we’re going after the big the big underlying things but I think we need to think heavily about clinical trials new pharmaceuticals we can’t just wait for the drug companies to do that every single new drug very expensive takes a long time huge huge burden on patients pocketbooks hard to get through insurance and so much of this could be done a lot of it could be done – repurposing there are some needs for new pharmaceuticals but for example say in our viral treatment but but we need to look at repurposing drugs so much more cost-effective it would be quicker just do the clinical studies let’s let’s let’s get movement on clinical trials for treatments when you’re treating you have to kind of break it down kind of like I did you have to look at the different components one thing I’ll really point out about treatment I think it’s important as we look to the future of treatment we can’t if if there’s an infection triggering an autoimmune response we need to consider both if we just block down the auto try to block down to autoimmune response without blocking the trigger we we might be leading to some problems not effective so what I’d like to conclude with this these these illnesses they really they challenged our minds and they challenged our hearts that’s that’s been huge if you look so much the struggles that patient have are because number one we just can’t wrap our brains around it is so hard the other one is it takes an open heart to listen to someone who you can’t relate to the problems that they’re having exactly you have to be open to listening to someone and really understanding what they’re saying so it challenges our minds and hearts I’d like to thank the baton Horne Center they’ve done so much to help me in terms of understanding this I’d appreciated when they provided a grant for me to go to the the meeting last October and one one last thought that I’d like to end with so I went to I went to this meeting the International Association of chronic fatigue syndrome and in the meeting in October a very enlightening meeting but I felt like I’d kind of the way I do certain things and I felt like I’d my parents lived there in Florida and I felt like I’m Sunday I needed to rather than stay for last day go back and attend church with my parents and and and I was very struck and when I was there one of the songs that was selected that we sang this was this was the middle verse and it says I would be my brother’s keeper I would learn the healers heart to the wounded and the weary I would show a gentle heart and you know I don’t know what could have been more apropos to the situation then than that that’s just where I was at I was learning the healers art I was learning about treating those who are wounded and wearing and we’ve got to remember the heart of it we’ve got to remember the heart of it and also place faith I think that there’s there’s there’s a higher influence there you know and in all this and and so I’d like to close with that I appreciate you all coming I welcome to take questions if you could when you ask your question rather than sharing personal information if you could ask it as a general question for the whole audience but I’d be happy to take questions and thank you for for coming so we have the microphone here talk about there with FEMA is that yes yes rituximab is available in the US that’s a good thing the problems are number one it’s an expensive treatment still and number two it is a pretty powerful treatment blocks down your immune system and and it’s really hard to tell who’s going to be helped and who’s not so number one it might be out of pocket because your insurance may look at a you know I’m saying you and in the collective sense a person’s insurance may look at it is being an investigational which which it is and and and and it is not without its potential problems but it is available and some people have been on rituximab but they’re doing trials in Norway the ones who discovered it and and I was got to talk to one of them in the conference and I understand because I understand they’re actually trying to this is great this is what happens in like the non-food pharmaceutical company trial that might not have happened there but they’re really trying to hone it down to who’s gonna respond and how can we test to determine who’s going to be the best candidate but yet yes it is available in the US do you know what would cause of regulation of mhc1 receptors on muscle cells in the case what would cause up regulation of MHC 1 receptors on muscle cells no I don’t you know the MHC receptors are the major histocompatibility complex are involved in in presenting antigens to to the immune system to kind of help you recognize what’s going on inside the cell and see if Friend or Foe but I should have made the caveat you’re probably going to have a lot of questions at that level of granularity that I won’t be able to answer and I’m sorry okay good excellent question and and what inflammation really does inflammation you got a reason for inflammation you know our bodies were designed a certain way they you know came about a certain way and inflammations got the purpose so what inflammation is is your body’s way of responding to attacks on it and hopefully fixing itself and repairing itself getting rid of the the virus the bacteria the injury whatever inflammation is very important but the problem is is that inflammation also doesn’t makes you not feel good and it can have some side effects so we have to determine where is inflammation being helpful and when is it not being helpful so an infection can cause inflammation and if it’s just that kind of latent infection that’s sitting there well it may just be causing an ongoing inflammation and the inflammation may just be making you feel worse so in fact information is a response to infections that helps get rid of it but it also is a result of infection that can cause other problems is it possible to volunteer for a trial that’s a better question for the Bateman Horne Center could I do you all have an answer to that so the Bateman orange Center is currently involved in trial work for clinical purposes of all I should say studies related to fibromyalgia and we are hoping in the near future to be able to engage in pharmaceutical trials for some things related to a me/cfs and if you may be aware of the new NIH money that has come to support additional research for mecfs it’s the largest amount of money that has been injected into the system there are three major grants that were given and they’ve been art centers that collaborator on two of them and so our need for individuals to be willing to participate particularly those who have our considered newly onset patients in the past three years produces we’d love to engage here at the center as well and that you could reach out to the Magnum Arts Center either online or through our portal or call the clinic to learn more about those research opportunities thank you any other questions there’s an international question anything available in Australia well it kind of it kind of depends on on what you’re looking for whether it’s a medicine or there are doctors in Australia who focus on this illness medicine like rituximab I’d I would imagine would be available but probably similar issue to what you’ve have faced here in the u.s. some of the other treatments like treatments of pots if that’s present like I said there’s there there’s no good overall curative drugs for mecfs there are a lot of supportive drugs and a lot of those are available things like the two pots treatments that I was mentioning but you have there are doctors there and you have to find a doctor that is is knowledgeable now that’s that’s the trick so much doctor holidays Express one of the challenges we have not only educating the professional world and having more providers who are aware of the standards that are now established and how to make an appropriate diagnosis and start to establish some treatment routines one of the things that maple horn Center is doing right now is a pretty intense collaboration with as many medical groups as we can to help educate other providers locally there are some and then online starting to help Rossio me education for the providers in state as well as outside the state of Utah dr. Bateman will be involved with a group of individuals the first of the year that will bring people who have treated mecfs from around the country and in fact him around the world we’ve got a couple of Mitchell’s West River participating to try to bring together the body of experience from individuals who have had clinical time dealing with this over the past you know 20 or 30 years and to capture that and to provide additional resources to providers about that collective and aggregated experience so lots of things to watch for the pavement warrant Center also now has rolled out a series of educational programs to deal with the detail of a lot of the things that dr. holidays talked about today but there’s one topic that I think is really important and that is not only have to get at the right diagnosis but it’s how to have an effective conversation with your provider and so if you live in an area where you don’t feel like you have a primary care provider who can help you we hope to be able to make this online at some point we’re doing in-state classes on this now but it helps prepare the patient and empowers the patient to have an effective conversation with their provider and what are the things you need to take to help that provider be a little better educated and prepared for the conversation that you would like them to have with you okay there was just one last last question there’s a bit of a debate on whether CFS patients to be on an organ donor list or blood donor that’s that’s this is totally winging it so so yeah that that’s that’s an excellent question and I guess the best answer would be I can’t really speak to that but I would be concerned I would have my concerns just kind of like what you would if if you had anyone else where where you look we’re looking at the potential of chronic infectious illness that that’s got to be the concern there as well so a good question not it not a good answer well listen thank you dr. Holliday we appreciate so much thank you very much for your time and visit our website as well as join us next month for our education thank you for your time

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