By David Tuller, DrPH
When I was in Australia two years ago–wow, can’t believe it’s been that long!–I spent some time with Dr Mark Guthridge, an associate professor of biomedical science at Deakin University in Melbourne. Several years ago, after a bout of mononucleosis/glandular fever, he developed myalgic encephalomyelitis, which in Australia even patients and specialist doctors generally call chronic fatigue syndrome. (Actually, many or most actually say “chronic fatigue”–I kept trying to nudge people to at least use the word “syndrome,” but it was a pretty hopeless endeavor.)
Last month, Dr Guthridge talked with Tim Wong-See, a journalist from ABC Radio, about the illness, his own experience, and his plans for research. The audio can be heard here. Below is a slightly edited transcript of the interview. (It seems wrong to write anything about Australia without mentioning the terrible fire season the country has been through.)
Wong-See: Now how do you go about diagnosing an invisible condition, one that you know exists because you’re living it. You know what it feels like, and what it’s doing to your body, but no one around you either believes you or knows what exact condition you have. Well, that’s what it can be like if you have chronic fatigue syndrome. Mark Guthridge lives in Melbourne. He found himself with chronic fatigue symptoms but couldn’t find any answers and that’s despite the fact he worked as a research fellow at Monash University at the Australian Centre for Blood Diseases. So having been there himself, he is also part of a new initiative that’s really truly getting started this year to make diagnosing chronic fatigue easy. Mark, what’s the most common myth you hear about chronic fatigue syndrome?
Guthridge: Probably the most common is that it’s just tiredness. And that’s part of the issue with the name “chronic fatigue.” People think, well, they’re “tired.” And everybody gets tired. So you very commonly hear people say, €œWell yeah I get tired too. You should try running after two or three kids or trying to work two jobs.€ Because we all live very busy lives and we understand what tiredness and fatigue is. But chronic fatigue syndrome or myalgic encephalomyelitis, which is a bit of a mouthful but that’s the other name for it, is more to do with a pathological fatigue. So this is a fatigue so profound that people can’t do even the most basic things in life. Go to the shops, pick up the kids from school, run errands, and little alone try and maintain a full-time job. So these people, these patients are very sick. And if they try and over-extend themselves, it actually makes them sicker.
Wong-See: What is it like when people have chronic fatigue syndrome, what does that feel like?
Guthridge: So one of the key hallmark symptoms, which is actually a diagnostic for chronic fatigue syndrome, is unrefreshed sleep. So, it doesn’t really matter how much rest and sleep these patients get, they cannot recharge their batteries and get back to normal. So the big difference between a person who’s burning the candle at both ends and trying to do lots of things and getting tired and fatigued, if they’re able to go to sleep, go to bed, go on a vacation or relax, they can recharge their batteries and, essentially get back to 100% again. These [ME/CFS] patients can’t do that no matter how much they rest. They cannot recharge their batteries. And in fact, they can even go into the red. So, if they over-exert themselves, then the metabolic capacity to do even simple tasks like have a shower, cook a meal, go to the letterbox, pick up the mail, becomes impaired.
Wong-See: I’ve even heard someone describe it as if it’s like you’ve had a rest, had a sleep, but it feels like you’re getting off a Velcro couch.
Guthridge: That’s a very good term. People describe it as sort of waking up with the flu combined with a hangover, which is another description, very apt. So you feel foggy, your brain doesn’t work properly. The muscles don’t work. You might have a headache. Some stomach problems. So it really does, it feels like the flu, rather than simply tiredness or fatigue.
Wong-See: You talk about a lot of these feelings, a lot of these symptoms, and you know it very personally because you’ve had your own journey with chronic fatigue syndrome, which started in 2015, you were working at the National Health Medical Research Council at the time, tell me a bit about the work you were doing there.
Guthridge: So I was actually working at the Australian Centre for Blood Diseases but it was with a NHMRC fellowship. I was running a lab where I had some post-docs and some students and we were doing drug screens to try and identify drugs that might be able to treat leukemia, which is a blood cancer. And so we would screen these drugs and put them through our pipeline in the laboratory, to try and get them into clinical trials. And back in 2015, I came down with mononucleosis, or glandular fever as it’s known in Australia and got really sick and I was bed-bound for at least three or four months. I was told, €œWell, sometimes it just takes a little bit longer to recover.€
I’m not a spring chicken anymore. And, so I was sort of bed-bound trying to recover from this. And I just didn’t get better. And it just went on for months and months, and all the time I’m trying to run the lab, and supervise students and post-docs, write grants, write papers, and I just could not do it. And it was a very confusing, baffling time. Because I know my body. I know what I’m capable of. I knew I was sick, but that recovery just wasn’t happening. And in medical research, there is a culture of working really hard, as we all do, to get the results to try and find the new breakthroughs. And I wasn’t living up to that.
Wong-See: At the time, how easily accessible was the kind of help that you required to try and clarify some of the confusion you were feeling?
Guthridge: Well, I can say that, even a scientist who has ready access to all the scientific literature and, I have access to lots of clinicians, immunologists, rheumatologists within the institute I was working at, it was difficult. It was very baffling. And this is a major problem for patients to try and get number one, a diagnosis and number two, the right management, help and treatment. So in GP surveys overseas, and I don’t doubt it is any different here in Australia, less than 50% of GPs know the diagnostic criteria for ME/CFS. Many patients report being undiagnosed for five to seven years, and some patients never get diagnosed. So trying to plug into the medical health system, as many other patients with many other diseases can successfully do, is enormously difficult for these patients. And these patients don’t have, in many cases, the capacity to do that because they’re so impaired. If you’re housebound, or bed-bound, the very act of trying to get to the doctor, once or even twice or three times, can put you into a crash that can last for days and days.
Wong-See: Is that what you found for yourself? Was it difficult to actually physically go and get the help?
Guthridge: Yeah, I saw many doctors. Many doctors. And I live in Melbourne, where I’ve got lots of doctors around me. If you live in the country, it’s going to be even more difficult. And unfortunately, the medical system doesn’t really encourage that in doctors, to be honest. There is a bit of a time limit in many ways in terms of the Medicare bulk billing system that doesn’t allow doctors to spend the time to work through the diagnosis and all the issues. The other issue is that when patients go to doctors they’ll run a battery of tests, and invariably those tests come back all normal. And the doctor will say, €œwell, there’s nothing wrong with you.€
And the subtext to that is, “Yes, it’s all in your head. Your tests are fine. There’s nothing wrong with you. Maybe you need to lose a few kilos. Maybe you need to exercise bit more. Maybe there’s a deeper psychological problem. That you’re stressed or something like that.” So that’s what I think patients get very upset about. And like me, many of these patients know there’s something wrong with their body. They know there’s something broken. There’s something not working. So to be told that you just need to exercise a bit and, you know, lose a few kilos, it can be very upsetting.
Wong-See: Did it ever get to the point for you, Mark, where you questioned your knowledge and your field of expertise because of what other experts were telling you about what you were going through?
Guthridge: Not really. But I must say that, just maintaining the motivation to try and pursue the diagnosis, find the doctor, trying to nut this problem out, was exhausting. I’m a scientist, so that’s what I love to do. I love a biological problem, and that’s what I had. I had a list of diagnostics in front of me. I had the literature. I was talking to other scientists. That’s what I love about science. It’s a detective case. And you’re going to try and solve the issue. But what I did find difficult is maintaining the motivation to do that because it took up so much energy and time. It took away from my ability to spend time with my family. And it became such an issue that every now and again I would say, “Look, for the next two months, I can’t do this anymore, I’m just gonna have to spend time trying to manage my energies for deadlines at work, or to spend a bit more time with my family, or to spend time on myself.”
Wong-See: You’re hearing from Dr Mark Guthridge on ABC Radio. He’s an associate professor in biomedical science at Deakin University, talking a bit about chronic fatigue syndrome, the difficulties that people can run into in trying to get a diagnosis…When it came to one of your friends, they were diagnosed with chronic fatigue syndrome and that also helped bring out the international criteria when it comes to diagnosing CFS, which ended up providing some more clarity for yourself. Can you tell me about what happened there?
Guthridge: So I had a friend who had the condition. It was a friend-of-a-friend actually. And she went through the difficulty in getting a diagnosis as well. She described [her symptoms to me] and we sort of had that moment between each other where we knew exactly what we were talking about. And she was fortunate enough to find a doctor who really specialized in that, and I managed to get a consultation with him. And so I was very fortunate to go and see the same doctor as well. And I remember very clearly, and I think a lot of other patients will remember if they’re fortunate enough to experience, the exact time and moment of getting their diagnosis, when the doctor said, €œYes, I know what you have. I know that you are truly suffering and what you have is myalgic encephalomyelitis or chronic fatigue syndrome.€
And this doctor got out the international criteria. And we went through the boxes there for the symptomology. And it was a perfect match for me. And I think any patient, when they go through months, maybe even years, trying to get a diagnosis, and finally come to that moment, and get a diagnosis, it is such a relief. A very emotional moment. I know some patients tell me how they are brought to tears by it.
Wong-See: Tell me what that moment was like for you?
Guthridge: Yeah, it was just such a relief. I sat there, and to be honest I was thinking, really? Is this what I’ve got? I’ve heard about this, but what is it? And so he went through and described the condition, and it’s epidemiology and etiology, so that’s what causes it and how many people suffer and so forth, and that was just so illuminating. And then I, as a scientist, I went back to the lab and the computer, I started reading up on it. I went back to my bloods and pathology tests and went through those again. And yes, everything fell into place. It was one of those sort of moments that I’ll never forget.
I guess like me before I had the condition, most people don’t know much about the condition. And this is despite 200,000 Australians estimated that have this condition. So that’s like the whole populations of Hobart or Geelong entirely sick with this disease. Probably around about 6,500 Australians will get diagnosed with ME/CFS this year. So it’s twice as common as epilepsy, three times as common as Parkinson’s, four times as common as multiple sclerosis, 40 times as common as motor neuron disease. Yet people don’t know about it. This is by no means a popularity contest in terms of diseases, but I think people are quite shocked when they find out the prevalence of this disease and how little we understand it. And of course, for all those other diseases, there are diagnostics and treatments for. They become medical emergencies. But when people are diagnosed with ME/CFS, the story is very different.
Wong-See: When you talk about those numbers of people of Australians who are affected by CFS, does that include the number of people who are living with the symptoms but don’t officially have the diagnosis.
Guthridge: No probably not. It may be an underestimate. And that is part of the issue. But Australia’s peak funding organization, the NHMRC, is now starting to fund some epidemiology studies which will determine the frequency of this disease in Australia. Because, of course, if we don’t know the frequency, then we don’t know the impact in terms of years lost in economic earnings, the personal cost, then it’s hard to really allocate the health dollars around that disease.
Wong-See: For people who are diagnosed with chronic fatigue syndrome, how common is it that they will have some kind of pre-existing condition before their diagnosis?
Guthridge: That’s a good question. Patients can have co-morbidities, which sometimes can be confused with ME/CFS. One of the common misdiagnoses for ME/CFS is depression. Very often, patients who become bed-bound or housebound lose their job. Often as a consequence of this disease, they can get depression. But in terms of pre-existing conditions, when you look at the data in studies, their BMI [body mass index] is not particularly unusual. They don’t have pre-diabetes or pro-inflammatory conditions, such as arthritis, autoimmune diseases. There doesn’t seem to be any association with any of those particular conditions. But very often, the first time this condition rears up is with a viral infection. So [an individual that is] otherwise healthy, can get a viral infection and they are laid low with ME/CFS.
Wong-See: So back in 2015, when you were battling with your symptoms of chronic fatigue syndrome, you talk about that you very much loved and enjoyed your work. You were doing some research into the cures for leukemia, but did the culture around you make you feel like you could be honest about what you were feeling and talk openly about the kind of symptoms that that you were going through?
Guthridge: Look, yeah, I found it difficult, to be honest. There’s a lot of stigma and misunderstanding around this condition. Many patients are thought to be just tired, lazy, malingering. I always had a really strong work ethic. But I did feel the need to sort of show that I was working from the front, for my team, and to try and push through and pretend that there was nothing wrong. I didn’t want people being concerned that their lab head, and the person running a lot of their projects and helping them with their projects, worried that I was sick and unengaged. And so for quite a long time actually I didn’t really discuss it. They knew there was something wrong because it was really a big transformation in the way I went about running my lab. And, looking back, I didn’t deal with that very well at all. And if I had my time over, I’d do it differently. I guess, and this is not a defense by any means, but there is a sort of a feeling that let’s tough this out, lets push on through. And some patients try this themselves not really understanding the consequences of what can happen where their symptoms can become worse.
So this idea that we just tough it out and push on through and push against the symptoms is what I tried for the longest time. But it just made me worse. And my staff and my students were very concerned. They didn’t know what was happening. And eventually, my postdoc, a lovely guy, tapped me on the shoulder and said, €œLook, we need to talk about this.€ And it was fine, actually. They were all very accepting. They said, €œLook, we can help you, you just tell us what you need and we can help.€ That was a lovely moment. And I guess this goes beyond science and me. We very often in life, in general, we have this idea that, when things get difficult, we should push on and work harder. Which is a good thing, that’s what motivates us to strive to do better.
But ME/CFS is very different. It’s actually very different to most other diseases. If you push too hard, if you exercise, you can actually go backwards. And actually it’s the only disease I know where exercise is actually counterproductive and maybe even be contra-indicated. So if you’ve got cancer, cardiovascular disease, COPD, renal failure, exercise for those patients does wonders for their prognosis. ME/CFS is completely different. Exercise is deleterious, it puts patients backwards. It can send them to bed for days, in some cases for weeks.
Wong-See: For yourself, when you finally got your diagnosis, Mark, you talked about a friend-of-a-friend who was diagnosed and that led to you sitting in front of a doctor who was talking about the international criteria. When it comes to diagnosing CFS, for people who are looking for a diagnosis, where do they go to find a doctor?
Guthridge: Look, I’d like to give your listeners a very simple and easy answer there. But it’s not so simple. So, in the case of Melbourne, where I am, I know the case is probably similar in other capital cities and more so in the country, there are no specialist chronic fatigue clinics where doctors understand and can manage the disease. Or if there are, the waiting list is very long. So I guess my advice would be, if it’s at all possible to find those doctors, do whatever you can to get in to see them because it can make a big difference. Early intervention and understanding the disease can prevent the crashes that occur with exertion.
Wong-See: You yourself having gone through it before, but also in a position where you’re working at Deakin University and Associate Professor there in biomedical science. This year you’ll be setting up a chronic fatigue syndrome lab. So tell me what you’re going to try and achieve there.
Guthridge: Yes, so you know I have been working on cancer for a long time, but I thought that having lived this experience, I’m in a unique position to understand the disease and maybe even do some research on it. So I think, and this is really what the major funding organization, the Australia NHMRC is thinking as well, one of the big game changers for this disease will be identification of a diagnostic biomarker. Without that patients will remain in the revolving doors of doctors and not getting a diagnosis, and won’t be able to get the proper care. And of course, there’s no real incentive to run a clinical trial if you can’t monitor patients objectively with a diagnostic biomarker. And this is really holding back research.
So if we had a diagnostic biomarker, it would not only provide some clinical certainty around these patients, but we would save very scarce health dollars because these patients wouldn’t have to go through many, many doctors to get their diagnosis. And it would also provide readouts or ways of monitoring patient responses to new drug therapies. One of the key things we’re going to do is try and find new biomarkers. These are sort of “flags” in the bloodstream that indicate that this person has ME/CFS but not another chronic fatigue condition.
Wong-See: Essentially what you’re saying, in terms of getting a diagnosis, I could go in for a blood test, and someone like yourself could monitor my blood and look for these biomarkers, as you call them, indications in the bloodstream, and you could narrow down a diagnosis better.
Guthridge: Exactly. And and we know for many diseases over the last 20 or 30 years, where prior there was no biomarker, no blood tests, no pathology test, to the day after a discovery was made where there is a biomarker or blood test, that that disease changes overnight in terms of how it’s treated.
Wong-See: Mark, thanks for sharing your story with me. That’s Dr Mark Guthridge on ABC Radio. He’s an associate professor in biomedical science at Deakin University, talking about his very personal experience with chronic fatigue syndrome. But in turn knowing what that’s like, moving into the future and into 2020, a CFS lab as he describes it trying to work towards making diagnosing this condition a little easier.