Transcript

Lauren: All right guys, thank you so much for joining us. I am here today with Chris Armstrong, who is the science liaison for the Open Medicine Foundation, or OMF — as some of you might know it. OMF is an organization that is working on building awareness and funding research into ME/CFS, which is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. So, Chris, thank you so much for joining us today.

Chris: Thank you very much for having me on, Lauren.

Lauren: Total pleasure! So why don't we just start from the top and you can tell us about your work in research and how you came to OMF.

Chris: Okay, so I'll probably start everything at the beginning. I actually got into this area straight from a science undergraduate degree. I went into working at what would be the equivalent of a Master's [degree] in the US, looking into CFS at the time. And that really came as a project that had very little funding. It was more of a dreamed-up project between two people, actually, who met on the tram — my supervisor and someone who was working in the area …

Lauren: Strangers on a tram!

Chris: Yes, something like that … strangers on a tram, indeed! They came together to cook up a project in regard to ME/CFS — which was looking at the gut bacteria actually, and trying to determine these gut bacterial differences between ME/CFS and healthy people … and then looking at maybe some of the compounds, or what we call metabolites, that are being produced by these bacteria, and how they might be affecting people.

Lauren: That makes a lot of sense, because gut bacteria has so much to do with the root cause of so many chronic illnesses. So it's interesting that you've been looking into that for ME/CFS.

Chris: Yes, yes. My supervisor was a protein chemist. But the gentleman that he met was a microbiologist; he'd been working in this area. He’d actually had a private lab looking into ME/CFS. And other diseases, actually; he pretty much would measure the amounts of bacteria and the types of bacteria in stool samples, and from that would determine what we would call “gut dysbiosis”. That was very early on in the day; that was 10 years ago.

Lauren: This was when you were an undergrad student.

Chris: Yeah. Well, this was just becoming the equivalent of a Master’s. The gut dysbiosis is actually the sort of work that has become bigger and bigger over the 10 years, for sure. But also looking at the metabolites, which are these little compounds that everyone creates — what bacteria create. We use them for energy. We use them for everything. You probably know them as amino acids: sugars, lipids, fatty acids; all these little compounds. But for us, they're real molecules. That is actually my main area, to measure these little compounds in whatever different types of bio fluids — blood, urine, saliva — all these different type of areas, which we can get access to these fluids. And what they do is they tell you about the overall system of the body. They’re very complex because they are constantly changing. They’re constantly dynamic and working with each other in relation to what you, as the person, is doing or feeling. Whether you have eaten, whether you're sleeping, whether you're exercising … they will change.

Lauren: So it’s hard to get a baseline, even just for a typical healthy person?

Chris: Yeah, it is tough to get a baseline. Because they're so sensitive, they'll really tell you things that are going on in the body that might be most closely linked to symptoms. That, as an area of research, has actually been very new. It's been building probably over the last few decades, but it's only really become more popular in the last five to 10 years, actually. It's a very new area of research.

And that's become one of the big things for ME/CFS, because this is a condition where there is no known pathology, there is no known damage that can be measured within the individuals or that has been visualized within the individuals that have this disease. We just have a complex set of symptoms.

So the value of this type of research is that usually you use metabolite mix to characterize the pathology. But because it's so sensitive to just the general conditions of the body, it will tell you whether there's something wrong even if you haven't seen the pathology itself. This has been one of the first consistent findings in this field.

Lauren: So this is sort of opening a door to potential treatments, possibly?

Chris: Yes, this is opening a door at the outset really, to maybe think whether we are finding some biomarkers. But also to really understanding the disease. Because it gets taken for granted that a lot of these diseases that we get diagnosed are really based on the pathology that you see. A doctor will find that you're not making myelin, or your myelin has damage, or you’ll have lesions, or there'll be problems with tumors or growths that shouldn't be there. Or you have different types of damage within the body. And part of this, and what we're trying to do, is determine how aware this issue is in ME/CFS patients because we don't have any of that.

Lauren: Yeah, and that seems to be one of the really frustrating things about having ME/CFS, or possibly having it … is that there's a lack of diagnostic structure, which you guys are trying to work on with these studies. But also a lack of treatment structure. Can you walk us through a little bit about what ME/CFS is for people who are listening, and thinking, ‘What are you talking about?’

Chris: Yeah, it's a complicated disorder. It was originally known, I guess, as myalgic encephalomyelitis. Probably the best way to understand it is to go back into time into where it happened — because there have been reports of this condition for many years, for centuries. But …

The major reports kind of came out as outbreaks during the middle of the 19th century. A really unusual component of this disease is that you can have outbreaks of it.

And so what it really is, is something like a trigger or trauma — or sometimes no trauma. But essentially what happens is, the person gets to a state where they have significant levels of fatigue. Significant issues with sleep, significant issues with pain, sensitivity.

Lauren: Yeah, and when you say significant issues, it’s not just like someone's real tired … these people are no longer able to function as they normally would.

Chris: Yes, this is a loss of function, and the basis of the diagnosis is generally at least a minimum of 50% loss of function.

The main symptom of this disease is something called post-exertional malaise (PEM), which is, after any type of exertion — mental, physical, stressful — you’ll have a very significant dip into exacerbating your symptoms. And these will include significant headaches; inability to move; fatigue like you've never felt before; what patients refer to as brain fog, where they can't really find the words that they want to say.

And so that is the most debilitating component of the disease itself. And one of the toughest things to organize. And for the patients themselves to come to grips with is that, doing work, doing exercise, doing exertion is going to sometimes make them a lot worse. And so how do you grapple with that?

There are probably over 60 different types of symptoms, but the four core are really post-exertional malaise, fatigue, unrefreshing sleep, and cognitive impairment. Then they'll have pain episodes as well. It's highly co-morbid with diseases like fibromyalgia as well. So, there are a number of different conditions which have very similar symptoms.

Lauren: That really dovetail, right?

Chris: Yeah, they really dovetail into each other.

Lauren: So does that mean that ME/CFS has been misunderstood or under-diagnosed by the medical community up to this point?

Chris: Yes, it has. Also, the amount of attention into research in this area has been very minimal. So probably I need to go back onto the history train … when the outbreaks first came out, it was really unexplained. It was kind of seen as a flu-like illness or a polio-like illness, initially. And it was first probably best described in the ‘60s by ‘the Ramsay definition’ — and that's when it first got the name myalgic encephalomyelitis. I think it was recognized by the World Health Organization as that in 1969. And then there were some more outbreaks. This was the area where it was getting the most public attention, because when you get a lot of people getting struck down with a mysterious illness, it captures the attention of people. This was actually happening largely in Europe, and in Australia. There was some in the US, but it wasn't until around the ‘80s in the US where they had these significant higher number of different outbreaks. It came down to the CDC coming together and putting out the definition, where they called it “chronic fatigue syndrome”. And this was largely based around chronic fatigue, the fatigue aspect, for a long period of time. This is a key aspect of this disease.

And another complexity is, you need to have it for at least six months. It's an ongoing chronic disease that isn't going away.

Lauren: Do we know if it's infectious as well, if it was associated with these outbreaks in the past?

Chris: It gets associated really strongly to infection because of these outbreaks. And because a lot of people can get them from significant infections.

Probably if you wanted to put an umbrella of what causes it, it’s just general significant levels of, I guess, a trauma or stress for a long period of time. When we talk about stress in medical areas, it's not mental stress as what people probably most readily recognize or associate with the word ‘stress’. But you have many different types — you have physical stress, you have traumatic stress, mental stress, emotional stress, nutritional stress, chemical stress.

And so we really have many different factors that can cause this. But it's really in the body itself. They're all kind of pinging off the same pathways. Because your body doesn't really have multiple different ways it deals with all these different stresses. It hasn’t developed or evolved to have a different pathway for dealing with getting hit from a bus, or dealing with a lion eating it, or dealing with a disease. It's all very much the same path.

Lauren: It’s all fight or flight, isn't it?

Chris: It’s fight or flight, but it's also the healing pathways within the body, and how they really break it down. You have to have evolved to have a way to heal yourself that can deal with anything that's happened to you. Because the body hasn't evolved to know the things or the diseases that are coming at it. It's evolved a system that you can kind of bounce back from anything that comes at it. That's the idea.

Lauren: So people with ME/CFS are lacking this system, or it's malfunctioning somehow. Is that right?

Chris: That’s kind of the idea. That's one of the ideas, and that's one of the major schools of thought in this disease.

Of course, there's also always people who are concerned about the role that pathogens might play. And we’re just scratching the surface with the way with the roles that pathogens might play.

The idea of conventional medicine has really been based on acute-based pathogens, or acute diseases where you suddenly get a severe onset, and then you can clear it up with medication. What we're talking about here is more other entities like bacteria or other pathogens that might exist with the person at the same time for a long period of time.

Lauren: So how big is this epidemic? Do you guys have any way of measuring what you're dealing with here?

Chris: Probably some of the best estimates we have is about one in 200 to 300 people.

Lauren: So is it considered a rare disease then?

Chris: …

It’s not a rare disease, actually; this is far too high a prevalence to be a rare disease. But it is treated like a rare disease. And that really comes back to the misunderstandings about what this condition is. And that's really led into a lot of the stigma associated with it, I guess, or the lack of research associated with it.

That's a crucial area for this disease, because without having that pathology or being able to find this biological diagnosis, it's been difficult to start research into it. And so it's been difficult to know where to start. And without providing those answers early on, it's actually been very difficult for the medical community to come up with some strategies on how to treat the patients, as well. So it's all kind of like a mess together.

Lauren: Do you find that you are hearing stories about doctors perhaps misdiagnosing someone with hypochondria, or hysteria even?

Chris: Sure, definitely. That's been a big part of this disease’s history and it’s still happening. So it's not just the history, it's still happening today. And I think a lot of that comes down to just not being educated enough in the area itself and the other different types of research that's happening. I do feel for doctors and people sometimes because obviously they have a difficult job and they have a lot of things to cover. But it's only a certain type of clinician who will dig in and try and really understand everything about what their patient is doing, what's happening to their patient  — and educating themselves on this disease and the new research that's happening. But at the same time, everything has to get better at communicating what to do. Clinicians, the ones who are very knowledgeable about ME/CFS, have to get together and formulate common …

Lauren: Language and diagnostic guidelines?

Chris: Guidelines, diagnostic structure, all this sort of stuff, and treatment guidelines to help people who probably don't want to invest a long period of their life, really, trying to understand this. But just so that they can have easy access to it, and help the patients in front of them.

Lauren: And what about the patients in the meantime? It seems like they're in this holding pattern, and that's going to take a further emotional toll — and they’re going to stay sick. How do you see that changing in the future with the research that you're doing and the funding that you guys are working on raising to continue research?

Chris: Well, the patients are really at the forefront of our minds, and that's really what Open Medicine Foundation was set up for.

It’s about trying to find a way in which we can get treatments as fast as possible.

Because the role of research is generally to slowly evolve and build better treatments and add to the existing. In this case, there's really nothing for these people. So, at the forefront for us is just to get something specific so they can at least ameliorate a lot of the problems they have with this disease. That's kind of the path that we take there, where we like to show people what we're doing on the road to getting treatments. It's not just that we do clinical trials on all these different types of drugs, because that's extremely expensive and time-consuming. You’ve got to work out the most efficient way to do it. So you're performing research, but also optimizing the path on the way to performing research. And you're constantly thinking about how is this work that I'm going to translate to some sort of physical product — either a diagnostic or treatment for the patients themselves? Because that's really the difference here. I worked in academic research, and the difference really from working now with Open Medicine Foundation is that push towards treatments and a push towards diagnostics. It’s no longer that the paper is the final entity, or the research article’s the final entity that we're trying to get here.

Lauren: It’ll be a cured patient.

Chris: Yeah, that’s the goal. And I really believe in that goal. And I believe in the concept of that moving kind of other distractions.

Lauren: Yeah, does that sort of light a fire under everyone's asses when they're researching … that there are patients in mind here, and you're getting to know some of them personally, as well. That kind of level of personal involvement … does that take a toll on you guys as researchers, too?

Chris: It’s very uplifting actually, I think … depending, I guess, on the way you perceive it. But I perceive it as very motivational, and yes, it does light a fire under you. I think that when I got into the field … a lot of the people who actually research in the field are the big names … they have a relationship with people with ME/CFS.

Lauren: It’s very interesting, that, isn't it … that they have a personal connection to it.

Chris: Yeah, they have a personal connection. And I guess, because it is so underfunded, you really have to remove your steady job or remove your steady income as a researcher, and go into something — uncharted territories — where there's probably not going to be enough funding on the other side to keep you going. It's really just based on hope or belief that something will come of it and you'll be able to keep pushing forward. So, there is a lot of that … the motivation has been a connection with ME/CFS. I, personally, don't have one. But when I got into the field, that was my main thing as a Master’s student …

Having relationships with some of the patients, just chatting to them, getting to know the disease … I think you see how unfair it is. And that's really what captured me — just how unfair.

Lauren: When you say unfair, you mean not just in terms of how these patients are forced to live, but in terms of their experience in the medical system — no fault of the doctors, just because no one understands it, right?

Chris: Yeah, that's right.

I think government groups need to be careful about trying to make sure that they’re funding a whole bevy of different diseases. Because you get a lot of research happening in certain conditions. And then there is, as you know in the invisible area, there are a lot of conditions out there — and that's really what happens: they don't get the attention.

They don't have the marketing dollars. They don't get that money out, and they can't get money going into them.

Lauren: How does the research funding for something like ME/CFS compare to the research funding for something like cancer?

Chris: It’s very little.

I think there were estimations that about $5 per patient is given to research in ME/CFS, and probably something in the order of nearly $3,000 per patient in AIDS, for instance. You're talking about a 600-fold difference.

Lauren: Which is not also to minimize the impact of these other diseases. But the fact that there’s limited funding into this … we really need to start considering this.

Chris: That’s the problem. That's the hard thing. You don't want to, obviously, say these other diseases aren’t as important. They’re definitely as important. The message is really to see if you can get more funding into these areas.

It's just about fairness; it’s about trying to get them the funding that they deserve, and recognizing the suffering that they're going through. That's really, really important. And the way you do that is with money. Money is important in this world. That’s how you get things done.

That's what you need. We do a lot of work on volunteer, we could do a lot of work on people who are just willing to give their time. But you still need a significant amount of money to make this sort of stuff happen, unfortunately.

Lauren: Which is exactly why OMF exists. And hopefully, you guys will reach a wider audience being on the show today. So, do you find that patients are often ending up on some kind of government assistance because they're losing so much of their regular function? And then, does the government fight back because there's this lack of diagnostic structure? Is it just this constant back and forth where no one gets anything?

Chris: Well, you’re kind of trying to find the villain in this, and just no one seems to be the villain exactly.

You want there to be some bad guy who's pulling the strings and saying, “No, you can't have this money because I don't care about you.” The reality is that it's the system, which is kind of like a vicious cycle …

… where the government wants to … the government people that I've spoken to, they're aware of it; they really want to get invested in it. But in the research field themselves, as an academic, the granting systems are based on fairness. But you're going up against people who already have money in their field. And they're using that money to do research and get results. And then they show that they have this history of all these results, all these papers; they show these new results that they have in their grants when they're applying for funding. Obviously, that looks a lot better compared to someone with a disease that really has no funding. You're trying to piece together some research. It's not a fair playing field in that regard. And at some point, you’ve got to try and work out: How do you make that system fair? Because it's designed to be fair. It’s meant to be impartial. It's meant to be based on peer review, which is scientists reviewing scientists. And it's fair enough … if I had a grant application come across my desk, or you have a few grants, you're going to give it to the one that looks like they have the better track record. Because you really don't know much more about this, other than that the scientists themselves appear to have a great understanding of this disease. They've done a lot of projects into it. And so they probably look like the surest bet that they can deliver on this new project with the new funding that they’re applying for. This is the complexity of it.

And so what it comes down to is, I guess, government agencies having to do what we call a targeted call, or specifically saying, “Look, we're going to allocate money for people specifically looking at this disease.” So that they have kind of a leg up. I guess it's like equity, right? It's not equality, it's trying to elevate superficially just so that they can get to the point where they can actually get to equality.

Lauren: Listeners tuning in now are going to probably peg that you have an accent, right? You came up working in Australia, and now work in the US in these research fields. So you've experienced, at least the research into this condition, on both continents, right? And I'm wondering if you've also, through that experience, gained an understanding of the medical system in these two countries. And as we're talking about the government, too … do you see disparities between the two in the way in which patients and doctors are being both treated and trained, respectively?

Chris: That’s a good question, actually. I think there are a lot of similarities. A lot of these issues that we’re talking about are global issues; it’s a lack of research, a lack of understanding globally.

Back in the history of the research area, because there were no easy answers and you have all these patients, you end up having a lot of GPs offloading ME/CFS patients into psychiatry and psychology. And they're trying to work out ways in which they can help people with ME/CFS, and some of those have been actually quite detrimental.

But those things are also kind of difficult to remove, because now you've created an industry — and this is the path that they go. Some people have built entire careers in trying to help people, through a psychiatry background, with ME/CFS … trying to help people with ME/CFS using their psychiatry background. And so you've got to try and then remove them; you've got to take them out of that, and then try and make the emphasis more about biomedical.

Lauren: Yeah. So it sounds like the understanding in both playing fields, in the US and in Australia, that you've seen, is that often it's considered a psychiatric problem. That it's a psychological disease, and not something that's full-body.

Chris: I feel that in Australia, definitely more in the medical community probably feel like that. In the UK, definitely as well. My understanding of the US is they do that as well. But I don't know if it's to that same level as in Australia and in the UK. It could very well be a little better here. Although my experience in it might be not enough to really comment on that. Because the researchers and the doctors that I've worked with here are all specifically biomedically-based. The NIH [National Institutes of Health] seem to be quite receptive. The government bodies giving funding in Australia are little slower, it seems.

Lauren: Despite the fact that there is a nationalized health system in Australia.

Chris: Yeah, that's right. It's interesting you say that, because it's a nationalized system, so they have nationalized guidelines. So it really affects the government. If you're going to start treating these people, there is more investment there already. Because if they're being treated for a disease not correctly, then I guess maybe people with ME/CFS are actually burdening the government more with the type of treatments they're doing.

Lauren: That made me so sad when you said “burdening”.

Chris: It's horrible, I know. In Australia, while we do have free health care, they don't get those benefits … people in Australia with ME/CFS … because the government hasn't recognized it. So that's what I was trying to say … because if they recognize it, then they have to start paying for it. In the US, I'm not sure if it's to that same degree. But then I guess insurance companies probably have to start paying for it.

Lauren: And they don’t want to!

Chris: That's right. No one wants to pay money. And that's what it comes down to.

Lauren: The money sort of lives in a lack of diagnosis for that reason. So that's got to make it even harder for you to fight against the lack of understanding of this disease.

Chris: Yeah, that's the really terrible part about it, I guess. OMF isn’t really associated strongly with campaigning or advocacy, or anything like that.

The main focus is really the research, and also education.

So we really want to just lead from that. We're just going to focus, we’re going to push and try and get as much information biologically about this condition out there. And trying to change people's minds. That's kind of like the grassroots effort of what we're trying to do.

Lauren: Have there been stories of success with certain treatments? I've heard about certain controversial treatments, particularly the ones that take a psychological point of view, that often get a bad rap in the ME/CFS community. It's like we're hearing a lot of bad news. But what is the good news, diagnostically speaking? Have there been some bright spots along the way? Have there been people who've been cured … and if they were cured, were they misdiagnosed in the first place?

Chris: I think the biggest bright spot for me is just the momentum of research that's happening. When I started in this field 10 years ago, there was no funding; there was hardly anyone doing any type of research. And now today, the funding has actually got to a level — it’s still very low — but it's actually improved from nothing. And also the research field is much bigger as well. And there's some big name researchers coming into this.

You have significant universities … OMF is funding collaborative centers at Harvard, at Stanford, which are some of the big name research institutions in the US. These are the bright spots; to me, that's the biggest change. And that's nothing to sneeze at, really. This is where it all begins. Every disease that we have now — even the ones that are well researched, ones like multiple sclerosis — they started in a similar position, but they started that 50 years ago.

Lauren: Is it just about continuing to push with that momentum? Or are there strategic ways in which OMF and individual researchers like you are going about raising awareness for this illness?

Chris: Yes, there is. There is a strategy. I’m Australian, so I like to liken it to building a reef. Australia's really known for the Great Barrier Reef; that's a big part of things that we learn when we’re younger. And to try and rebuild the reef — because there's significant amounts of damage, and they're trying to work out the fastest ways to do that. So, letting something happen organically … like building a reef, like building a research field … just little bits of coral, here and there, grow. And the current might wipe them away. Well, with research, you might fund little groups here and there. They don't find any answers. Or they find some answers, but then they don't have funding to continue. So they just kind of disappear. And so, that's kind of what's been happening for a little while with ME/CFS. There has been research, but very small scale, small research groups. They can't sustain themselves, so they kind of just disappear. And all the things they’ve learned … all the information is also gone. So the difference in reef building is, you try and create these farms; you create structures which can be protective to the reef that’s growing. So you work out ways in which you can anchor these reef-building corals to these solid structures. And then it grows from there. And that's kind of what we're doing with the collaborative research centers. The idea is that by funding them sustainably and trying to do it long-term, that they will be around for a long period of time. Instead of having a granting process where other researchers come to us and we give out a little bit of money here and there, we make sure that any of the research that happens is in collaboration with one of those centers. So when they build that knowledge, or someone else is in another university doing some research in collaboration with that group, they do the project — they might find something good, they might find something bad, or nothing at all — but at the end, you actually learn something. And that is retained within the collaborative centers. And that's really how we're trying to build out the initiation of this research field.

Lauren: It's almost as if you're trying to give the findings a little more life, isn't it?

Chris: You’re trying to give the findings a little more life, but sustainability. You want to try and get them to a point where they'll be around, and that knowledge will be around for 10, 15 years. Or 20 years or 30 years, or however long, so nothing is lost.

We just don't want to keep losing all these little clues and pieces.

So that's really where it's coming down to. And also the standardized way in which they do the research. If you have a lack of funding, generally, in research … you'll just try and do whatever you can. But the idea is to try and do things the right way, and consistent with each other. And that's important for a disease like ME/CFS, again because there is no biomarker. And so the diagnosis is reliant upon looking at the clinical presentation of symptoms within the patients, and following a diagnostic criteria. And another layer of problem is that there are multiple types of criteria for this disease. There's no even one consistent one that's being used. There are ones that are highly recommended by bodies and groups. But because it's evolved over time — it's evolved from the ‘80s to now, over the last 30 years — and in that time period, doctors will just take it … they’ll say, “Oh, this is the diagnosis that I know.” And then they just stick with it. And they might be sticking with one that was from 20, 30 years ago. Not keeping up to date with the newest ones.

Lauren: It's interesting because we hear about that kind of outdated information that doctors cling to sometimes. We hear about that in so many other illnesses. So it's no surprise that it's happening with ME/CFS, as well.

Chris: Medicine was really set up to stop death happening, or to put out fires. What we’re trying to do is … it’s not about waiting for someone to get so bad that you then have to remove this symptom, or this part of their disease, or this thing that they’re really struggling with. It’s about trying to get to a point where people are actually having no problems and they’re healthy and can be fully committed in society. That’s the goal — and I don’t think that has been the goal in medicine.

Lauren: Yeah, we have a sick care system and not a preventive care system.

Chris: Yeah, that’s right.

It’s like a lot of mechanics — without the servicing. It’s like taking a car to the shop every time it breaks down — and then fixing it again.

Lauren: Rather than putting good petrol into it, and oiling it.

Chris: Rather than looking after it. At least mechanics have servicing! We don’t really have that to that degree. I guess, in the US, probably there is a difference. At least in Australia it's free, so all on you for not going to the doctor.

Lauren: But the other thing you said is … that is because health is subsidized for citizens in Australia, it almost makes the red tape even more red tape-y.

Chris: That’s the concern, because what they start saying is, ‘Oh yes, this is a condition, so we have to start paying for it now.’ They would like to get to a point where we have a treatment first, so they can then fund the treatment. Because then they know they’re not just going into a hole where they’re just going to have to supplement …

Lauren: But it sounds like they’re asking for the chicken before the egg.

Chris: That’s right. They recognize it, but they just don’t know where it’s going to go. I think they’ll recognize the research before they’ll recognize, at least, funding. It’s tied up in psychiatry. I talked a little bit about that.

Lauren: Which is not to minimize psychiatry.

Chris: No, but you’ve created an industry.

When you don’t have an answer, you create this ‘band-aid’. But the people who make ‘band-aid’, they’re a company now, and so they don’t want to just go under.

So if you’re going to supplant the ‘band-aid’ making company, you’ve got to fire all these people. But they’re ingrained in the medical community, so you can’t just remove them — because they’re experts in dealing with this area. Which no longer is relevant

Lauren: So, as a scientist, do you disagree with the sole psychological treatment of ME/CFS?

Chris: Of course. Myself, I don’t have a problem with cognitive behavioral therapy, or psychiatry, or psychology, or any of these kinds of things. They definitely serve an important role. And sometimes that is the treatment for quality of life and trying to improve that. And they do a really great job. I really don’t think they should be the enemy, and that’s what I wanted to make clear …there is no real, big villain here. They are all subsets of how they treat these patients. They call it by the same name, and language is actually one important topic that probably should be brought up. We can talk about this on one of your podcasts.

Lauren: We talk about it a lot, actually. It comes up randomly in different interviews. But choice of words is huge.

Chris: They’ll say ‘cognitive behavioral therapy’, and to most people that’s like psychology, psychiatry. But then for ME/CFS, there’s actually a specific kind of cognitive behavioral therapy where they tell you you don’t have the condition, over and over… it’s in your head.

Lauren: Yes, it’s like a method.

Chris: But they call it CBT still. And ME/CFS patients say, “We hate CBT!”  And if you say this to a bunch of psychiatrists, they’re like, “What?!”

Lauren: Well, they’re giving CBT a bad name.

Chris: They don’t even know that’s what they mean. They’re just regurgitating what this other person has said.

Lauren: Don’t they also, in that particular treatment, train lay people to treat ME/CFS patients?

Chris: That does happen, yes.

Lauren: And that’s all part of the money machine behind that …

Chris: That does happen as well. I don’t think it’s really touched on as well. That’s a really touchy subject because …

Misdiagnosis is almost a subjective term, because you only know it was misdiagnosed after the fact that some person was treated by some psychiatrist, and it helped them.

That’s not being honest to what diagnosis really is. They weren’t misdiagnosed; that was part of the diagnosis. They got diagnosed with this condition; they probably met all the categories. But the reason they had this disease could have been different. And this could very well be a different disease in general. So it’s not exactly misdiagnosis.

Lauren: Misunderstanding.

Chris: Well, it’s a poor diagnosis.

It’s a diagnosis where the criteria is problematic. The diagnosis criteria has an issue in the first place, and that it is that it’s probably lumping a whole bunch of people under the same category.

Lauren: You could be looking at several different diseases here?

Chris: Oh, yeah! And we know that because the older criteria, the ones from 1988 and 1994, they didn’t have post-exertional malaise as a necessary symptom of the disease. They had fatigue; they had sleep; they had pain. So essentially, you could have those three things and have the disease. So if you had chronic pain that made it difficult to sleep — and you were tired because of that — you could have the disease.

Lauren: But that could be one of 30 different diseases.

Chris: Exactly right. It’s coming to one of the main problems. And that issue has been somewhat resolved by trying to improve the diagnosis with the newer, 2003 criteria and the 2011 criteria.

Lauren: But that’s nearly a decade old now, too.

Chris: They’re a decade old, but they’re still far better than the older ones. This is what happens … when you create a diagnostic that’s really broad, your population gets to this size. And then you get a tighter population, and it gets down to here. But then what happens to these people …cause they’re like, I got diagnosed … where do I go now?

Lauren: Obviously people can't see, but you did a little circle, and then a smaller circle inside it. And then what happens to the circle on the outside of those circles?

Chris: Yeah, that’s right. You have the outside circle. Then you have the inside circle. And what’s happening now with the people outside. And now you’re trying to work out where those people sit. And so it’s a difficult thing in terms of the diagnosis …once you’ve said the diagnosis is this, then you almost become responsible, a little bit, for looking after these people broadly. The important part, I guess, is for researchers to recognize this.

Researchers need to recognize that it could very well be multiple diseases, or the diagnoses might be catching multiple diseases, and that you need to be very specific with the clinician you work with and that the person who is providing you with patients and samples … that they are extremely competent and at least extremely able to at least get a really refined cohort that you then go and study.

But it also creates a difficulty in corroborating other people’s research, because you don’t know all that’s required to know about the way the patients they got were diagnosed. Truthfully, there’s a lot more that goes on than just the criteria. Every specialist seems to have their own special mix of things that they do to separate these groups.

Lauren: There’s really no standardization of any of it?

Chris: No, and that’s tough.

Lauren: And that’s part of the journey for you guys on the research front.

Chris: That’s part of the journey and that’s why it’s also a good idea to have a large group like this, and the foundation funding projects. Because then we have in-house requirements that we stay consistent with across all the groups that we work with. That’s part of it as well … not trusting the data and the information that’s out there, and pretty much saying, we may have to start from day zero here and just build information that we trust. I should also mention that OMF was set up as a foundation under Linda Tannenbaum, who had a daughter who was unwell with the condition; she was a mother, and she wanted to get something happening. So she started this foundation. But it happened in association with Dr. Ron Davis, who is the director of the Scientific Advisory Board that we have at Open Medicine Foundation.

We have two Nobel Laureates on this Board, and five from the National Academy of Sciences.

Lauren: Not too shabby!

Chris: Not too shabby at all. They’re really tremendous researchers, and they have a lot of say in dictating the type of research that gets going and the type of work that’s getting done. That’s how we do our governance.

Lauren: You have tastemakers on the Board.

Chris: Yeah, that’s right. They’re the ones who do a lot of this decision-making. And then we have Dr. Ron Davis, who’s also the director at the Stanford Collaborative Center; Dr. Ron Tompkins and Dr. Wenzhong Xiao, who are also on the Scientific Advisory Board, but they’re also the directors of the Harvard Collaborative Research Center. And then we have Dr. Jonas Bergquist, who’s also on the Scientific Advisory Board, and is also the director of the Uppsala Collaborative Center in Sweden. My role as a Science Liaison is to bridge the gap of the community, all the things that come into OMF, all the research ideas and the people out there in the broader community — kind of condensing all those research ideas. And then on the other side, we have all of the research that’s happening in-house, and translating that to the broader community to create more information for people, and to update them. Because, along this journey, you can update people with research papers, but we like to try and update people as fast as possible.

So we like to keep people abreast of what’s going on, because really, hope is a big factor for people with these diseases. And that’s something that Open Medicine Foundation does provide daily in terms of helping patients, that provision of hope.

We hear that a lot from them. And we definitely have come to understand that for sure, because when you have this condition, you want to know that people are working on this behind-the-scenes, every day. They’re trying to work out something on this disease, and they’re trying to work towards a treatment. And that’s the hope that we provide.

Lauren: And it sounds like you’re really putting the patients first. Even though you’re working on the research, it’s all for the patients. That’s really what you’re all about.

Chris: Yeah, it’s all for the patients.

And that’s probably where medicine needs to be, right? People are what matter. And the lives that they lead are what matters.

Lauren: How would your average person, listening, help? If we're all going to grow the community to continue research — and research really is the key — then how can someone listening get involved in the fight for awareness and help continue the effort?

Chris: Well, just by being active; being present on social media, connecting. I think social media is really a great platform for this, because in a way it is trying to create a network for what we're trying to do. We have Facebook, we have social media for Open Medicine Foundation or for ME/CFS; other groups that are available. And then they can spread and disseminate information on their pages, and then other groups. I think that's an easy way of doing it. But also you can get really active if you want to — put up for volunteering, for trying to raise awareness, going to your government and trying to make contact with them, trying to educate other people about this condition when you have this disease. First and foremost, educating yourself as well about the disease that you have. A lot of people do it. I guess we're fearful for the ones who haven't caught on to the biomedical and all this other information that's out there — and they're really just listening to their doctors and suffering right now, and may be completely unaware of all this other stuff that's going on. So, to reach out into communities as much as we can, and just talk to people around you and kind of get involved. I am a researcher, but I did get involved with the Australian Government. I went to some meetings with ministers to try and educate them about it. It was good; I was an expert, I guess, in the area, to explain to them. But also along with me, I had patients. It's always important to tell the personal story. People really connect with personal stories, I think.

Lauren: Absolutely. Well, that's another reason why this podcast exists, to tell stories. Do you have any tips for someone who maybe thinks something is off? Maybe they haven't got a diagnosis yet, but they’re, like, ‘Gee, Chris has mentioned a few things today that I have.’ What would you suggest that someone in that position do if they're not being recognized by their medical team for a particular diagnosis, or they're not being recognized by those around them in general? What can people do to seek help, and to seek a diagnosis and treatment?

Chris: Definitely do the research that you can on the Internet. There are resources there, and look into different areas. Try and connect to … perhaps a group for ME/CFS within your local area wherever you are, or your country or your state or wherever. Or any of the big organizations … Open Medicine Foundation … and really just inform yourself about the condition itself. In terms of what you would do, the number one thing for ME/CFS patients … I’m not a medical doctor, I'm a PhD doctor, which is very different … but I can recommend that pacing is very important. When we talk about pacing … it’s not pushing yourself into this crash. The post-exertional symptom I was talking about, we call that a crash. That’s really what happens when you get to a point where you over-exert yourself, and you get significantly worse. If you know that's happening to you, if you recognize when that happens … when small things happen, things that shouldn't do that to you. If that starts happening, you need to consider that getting to those points when you crash are actually quite bad … not good for you. And so what you need to do is learn or understand your body, learn how you're working, and what's happening to you leading up to that. And trying to understand the early warning signs, if you can. Not everyone gets them; patients do a whole number of different things to look at this.

That's probably one of the best pieces of advice — just to try and avoid those crashes.

And then it's also a balance at the same time, because you don't want to de-condition either. And that is a problem that happens with a lot of chronic disease, obviously. Especially if you're bed-bound for long periods of time, the de-conditioning itself has a negative impact on the body. So it's kind of working out how you can try and build yourself out of that. There's always different levels, so you don't have to go from lying in bed all day every day to then standing or walking or anything like that; it's a very slow pace. So when we say pacing, for some person with ME/CFS, it might be that they will try and raise their arm once a day. And that's how severe it can get; it can get extremely debilitating, to the point where they need in-home care and have J Tubes and all sorts of different things. So it's really based on the individual themselves. That would be my piece of advice.

Lauren: That's really great. And when this episode goes live, you guys at OMF are going to be in the middle of a fundraising initiative, as well. Do you want to tell us a little bit about that?

Chris: Yes, so we have a fundraising initiative that really kicks off in October, but also in the weeks leading up to that. We call it Triple Tuesday, and we have people who back the idea of funding Open Medicine Foundation, and people who donate … for every dollar, they will add in two, I guess. So it's a double match. So you're able to triple the size of your donation. That's a big campaign where we like to link everyone together; it really pushes the momentum of giving. And it's something that's extremely important for Open Medicine Foundation because the majority of the money goes to research; we have very, very little costs for the foundation itself. And that type of research is crucial in trying to find answers for this disease.

Lauren: Yeah, absolutely. And if anyone wants to find you, as well, and find OMF after listening to this episode, where can they find you guys?

Chris: So, www.OMF.NGO is the home website. So that's the one to go for.

Lauren: Yeah. And you can find information about Chris and so many of the other partners and research fellows, and people who are working for the organization there, which is really wonderful. Lots of info there about ME/CFS, about the state of research; it's a great place to start.

Chris: That’s right. The goal is to try and build a reservoir of information for people to have. But then also, obviously, on Facebook and Twitter as well, as I mentioned, and Instagram. Those are great tools, and we share updates every every day, I think. And then we also have emails you can subscribe to, and we have email updates or email blasts that we send out to people.

Lauren: Part of it is just having more of these conversations, isn’t it? To normalize the conversation that this disease exists. Let alone to work on the research involved in diagnostics and treatment. It’s continuing to talk about it. It sounds like the squeaky wheel gets the grease, right?

Chris: Yeah, just keeping loud and keep making an impression is the way to do it. Yeah, squeaky wheel gets the grease. That's the thing that you're trying to break.

Part of the negative part of the cycle was, people associating this with psychological illness or there was ‘something wrong with them’, or they were causing their own disease in their own head, or trying to make this happen. That created a really significant stigma for people with ME/CFS. And when that happens, it's hard to have confidence in yourself to ask for help or draw attention to yourself — because you feel like there's something wrong.

Lauren: Let alone the energy when you've got the post-exertional malaise. That sounds like a joke when I'm saying it … like, “Well, I can’t. I don't even have the energy to do it.” But actually, a lot of these patients don't even have the energy reserves to advocate for themselves in any way at all.

Chris: No, definitely not; they don’t. And that's also important, as well. When you have the illness, it's important, obviously, to try if you can. But especially when you know someone who is sick … and not just speaking to the people who think they may have this, but speaking to the people who think they may know someone who has this …

I think it’s really important to advocate, or speak for, people who can't.

I think there is a lot of value in doing that for everybody. And it's very, very necessary to do this. So I think that would be also an important point to make.

Lauren: And the point here is that it's not just in your head. This is a real disease and you guys are working to find a cure, to find treatments, and to create diagnostic pathways so that doctors will recognize this disease more, and not use diagnostics from 30 years ago, as we discussed.

Chris: Yes, that's definitely the goal. You’ve got to break that, and I feel like that's being broken. But there are a lot of people out there who, I guess, haven't escaped those clutches.

Lauren: Well, there are still deniers out there.

Chris: Yeah, there [are]. And there are probably still people under the care of deniers as well. You’ve got to make sure that you try and get that information out there, as far and as wide as you can — so that people will go, ‘Oh, wait a minute, there is a better answer to this question.’ And actually, ‘I can rebuild a kind of confidence in what's happening to me … that this is a disease that's happening to me.’ And being able to tell people about it. I think that's really important. I guess it's obviously very difficult. I know that. But it's something that is really important. And you probably have a lot of experience with other people on this show talking about that.

Lauren: This might come a little out of left field … but do you think that the current political climate is having an influence on the government's ability or interest in validating the existence of this disease, as well, and other diseases?

Chris: I really hope not.

It’s something that affects all people, all humans. And it's an equal opportunity disease; it affects everyone equally.

Lauren: I want to laugh and cry at the same time!

Chris: It doesn't care where you are, who you are, or where you come from, or anything about that. I can't imagine that would be something that would matter to these political groups; I hope not, in any case.

Lauren: And as you've said, it takes some people having a personal connection to it to really respond, but now’s the time to get involved. And to continue the momentum with you guys.

Chris: Yeah, it's obviously horrible, but we're excited — at least in the ability to be at the initiation of this new field of research and this kind of new era of understanding for this condition. I think it's a very interesting time to be a part of this. Because there are so many diseases … that we now know, what we take for granted, the history of how they initiated … and being really at the first steps of that is really, really, really interesting. And it's a great opportunity for people to now start getting involved, and have the confidence in fundraising for the research that's happening — because the research is really top notch.

Lauren: And for the patients out there listening … knowing that there's community out there for you. And that's the great hope. Thanks so much for being on the show today, Chris. It’s been great having you on.

Chris: Thank you very much, Lauren. It's been a pleasure.