Ideas programme, National Radio, 10 April 2005

This hour long programme about CFS, presented by Chris Laidlaw, consisted of a replay of parts of a radio programme first broadcast on Oct 9, 2002 in the United States – The Infinite Mind: Chronic Fatigue Syndrome (New York), Presenter and interviewer: Dr Fred Goodwin. This was followed by an interview by Chris Laidlaw of two of New Zealand CFS experts: Auckland GP Dr Ros Vallings and Simon Hatcher, senior lecturer in psychiatry at Auckland University.

Download MS Word version of transcript below (84kb)

Skip to Interview (on this page) with Dr Ros Vallings and Simon Hatcher

Infinite Mind series, U.S. (First broadcast Oct 9, 2002)

Presenter and interviewer: Dr Fred Goodwin

Fred Goodwin: What scientists are discovering about Chronic Fatigue Syndrome highlights the artificiality of the division between the so-called mental and physical disorders. People with CFS are sometimes told “it’s all in your head”, as though to say “you’re imagining it”. But there’s plenty of evidence of underlying mechanisms that are far from imaginary. This must mean CFS is physical, right? But the evidence that this a whole-body illness hasn’t laid to rest dismissive attitudes. One devastating example is the lack of disability coverage for CFS. Because of this, some advocates and researchers emphasise that it’s a physical illness, not a mental illness. I can understand that emphasis. Many people still have built-in attitudes that physical illness is more “real” than mental illness. And yet, when I review one of my own areas of research, clinical depression, there are some striking parallels between CFS and depression: hormonal imbalances, immune system dysfunction, autonomic nervous system problems, abnormal sleep. In other words, both depression and chronic fatigue are equally physically, and they both involve disturbed brain function. We often hear that people will accept an illness are real, and insurance will cover it, if it has an objective diagnostic test. But in fact that criterion is very unevenly applied. Consider that any number of very common and often devastating illnesses – arthritis, asthma, Alzheimers disease,  and I could go on – don’t have a definitive diagnostic test. They’re diagnosed by assessing the history of symptoms, by carefully examining the patient, and sometimes using lab tests to rule out other things. Indeed the fantasy that the practice of medicine is a simple matter of identifying definitive markers to come up with an explanation of what’s wrong is just that: a fantasy. So we’re all in this boat together: those with so-called physical illnesses, and those with illnesses that are considered primarily mental. If we’re going to fight stigma, we’re going to have to do it together.

I’m joined now by author Laura Hillenbrand. Her first book Seabiscuit came out to critical acclaim and became a number one best seller around the country. It’s about a race horse named Seabiscuit who overcame enormous odds to become a champion, capturing the public’s adulation. He was wildly popular. In 1938 American newspapers devoted more column inches to Seabiscuit than  to any other newsmaker, including Hitler,  Roosevelt or Babe Ruth. Writing Seabiscuit would have been a great accomplishment for any writer, but it’s even more remarkable given that it’s author has CFS. Miss Hillenbrand, welcome to The Infinite Mind. Let me ask you, why did you chose this topic for your first book?

Laura Hillenbrand: Everyone in this story is overcoming tremendous odds, and one of the individuals especially, the jockey Red Pollard, was continuously injured, he was blind in one eye, he was not physically suited to what he was doing. That resonated with me because I have an illness that makes it very difficult for me to work, especially to write.

FG:  How long did you struggle with this before you had any idea what it was?

LH:  It was about ten months, and it was a very harrowing ten months. I was afraid I might be dying. I lost 22 pounds in the first month.

FG:  How did it start? What was the first symptom?

LH: It’s quite typical that you have some sort of triggering illness. For me it was terrible food poisoning. I was a sophomore in college and I was sick to my stomach for three weeks and then one morning I woke up and I literally could not get up. I simply didn’t have the strength to do so. It knocked me out of college and I spent months just going from doctor to doctor and specialist to specialist, and I was afraid I was dying. I was getting a lot of neurological symptoms, I lost 22 pounds in the first month, my hair was falling out; it was physically very devastating. I ended up getting my diagnosis from the the head of infectious diseases at Johns Hopkins, and … even though he told me “at this point we really can’t do anything for you,” it was wonderful to be told for once what I already knew: that I had a real physical disease and somebody cared.

FG: Tell our listeners, though, how did you actually do this book? How did you manage the enormous task of researching and writing while struggling with CFS?

LH: It took me four years. It was very difficult for me to write the book.  It was a very different experience from what a healthy author would have. To get people familiar to what my physical circumstances are, I can only walk about three blocks in a day, I can’t travel, I had difficulty reading and writing because of vertigo which is part of the CFS, it’s a neurological problem for me. So what I had to do was arrange it so physically I could do it. So I would use as little energy as possible. I arranged my office so that there was food and water available to me all the time up there, so that I wouldn’t have to get up and go cook meals for myself. I hardly did anything but work on this book. When I had a lot of vertigo I would actually go to bed and lie on my back and write with my eyes closed, because reading and writing exacerbates vertigo a great deal.

FG: What was it like to write with your eyes closed?

LH: It wasn’t easy, and I actually would tend to write right over the line I had written before, so I would kind of scribble all over the place, but I could decipher it later. It was not easy to do, it took a long time, it set my health back a great deal to do it, but at the same time I’ve had this disease for fifteen years and it was a wonderful escape to be a able to step into the lives of very vigorous men who lived in 1938 as opposed to living in my own rather broken body.

FG: Do you every get …people politely say “Well you have this CFS but my God, you wrote this best seller. Maybe it’s not so bad.” 

LH: Most people today are wonderful in receiving the news of my illness. When I first got sick it was not the case at all. People were much more inclined to think I must have been malingering or faking something, or I must have had bulimia or something of that sort. I was misdiagnosed many times.

FG: What about depression, did they say that?

LH: Sure, people made that assumption, and I actually went to a psychiatrist at the suggestion of one of the first internists I saw, who said “I can’t find anything on your medical tests, so it must be psychological.” And I went to a psychiatrist, and he said “I would stake the reputation I have built over thirty years on my finding that you are mentally perfectly healthy. But you are suffering from a very serious physical illness. We just don’t know what it is yet.” And that is what it turned out to be.

FG: So it’s quite interesting that the physical doctor, the medical doctor said it’s mental, and the psychiatrist was the one who said “No, this is a physical disorder”.

LH: I think a lot of times medical doctors have the tendency to think if they don’t have a test for something it has to be psychological, it can’t that they just don’t know yet what it is. And people with a lot of illnesses have gone through this.

FG: Do you have any time of the day that is better for you?

LH: I get better as the day goes on. In the morning I really don’t feel well at all, and I need about three hours of sitting absolutely still to recover from a shower – my strength level is like that. So I do better as the day goes on. I usually can cook myself a meal at the end of the day and things like that. I gave up everything to do this, and I was willing to give up a lot to get it done. I was in love with the story and wanted to tell it.

FG: When you gave up everything, what was everything? What did you give up?

LH: It’s akin to having a dollar  to get through your day to get through your day, and everyone else has a hundred dollars, and I had to kind of mete it out. So what I would give up is I wouldn’t see my friends very often, I wouldn’t go anywhere, I would take fewer walks. I devoted all the energy I had to writing the book. And it had to be that way. It’s a very arduous process to write a book, especially one of this length.

FG: Have you had any treatments that have been helpful in any way?

LH: I’ve tried a lot of things. I’ve tried conventional things and unconventional things and a lot of them have backfired and not many of them have helped, and for me I just try to make an (inaud) around the illness. I try to live my life my life in spite of it instead of in obedience to it.

[Back to Top of Page]

Introduction to research discussion – then Fred Goodwin introduces CFS experts:

FG: What do we know today about what CFS is, and what don’t we know?

NK: Basically these patients are very ill, and they have a lot of symptoms that related to what’s going on underneath it. Their chemical mediators aren’t working correctly. There is an expression of the inflammatory cytokines – these are chemicals the immune system makes to stimulate immune responses, but too much of a good thing can be a very bad thing.There is abnormality of the neuropeptides in the brain that can cause quite a bit of disruption of things like normal sleep and cognition, and the basic hormonal balance is disrupted in a subtle fashion. So basically all these chemicals that are supposed to work to bring messages from Site A to Site B and make things work more efficiently are  working quite inefficiently.  And they interrelate in a way that makes it quite difficult to sort out which came first. But the end result is a set of symptoms that starts with a non-restorative sleep, a post-exertional exhaustion.

FG: Would you describe what you mean by the nature of this sleep problem?

NK: They’re trapped in a very light form of sleep called alpha wave sleep. And they’re not getting down into the deeper stages of sleep, and so they don’t have the restorative phase of sleep. These restorative phases are terribly important biologically. The neuropeptides  and the hormone system are sort of resetting themselves during the night, and have different kinds of circadian rhythms that these patients can’t (inaud) because they don’t have normal stages of sleep.

FG: So one possibility is that this is a primary sleep disorder?

NK: That’s one possibility, there are certainly people looking at it, though it’s certainly not like any other sleep disorder anyone’s seen.

FG: Just how severe can the fatigue get?

NK: I have patients that have less than two hours of upright time during the day. And they might only be upright for five or ten minutes, and by upright I mean sitting up, not necessarily standing up and walking around. On the flip side I have patients who are profoundly fatigued and it’s affecting the quality of their lives, but they’re still managing to get to work. So it’s a spectrum. I should also add that we don’t really know what the spectrum is, because so few doctors are diagnosing this illness that we’re missing 85 percent of the cases – 85 percent are going undiagnosed.

FG:  What do we have as a prevalence figure, given what is diagnosed? How many Americans?

KK: One of the studies done by the Center for Disease Control and the other done by a group at DePaul University have both converged on the number of about 800,000 adult cases in the country. The CDC requires that you have fatigue of at least six months, and it’s the kind of fatigue Nancy described. Also four of eight symptoms.

FG: And what are those eight symptoms that the CDC focuses on?

KK: Impaired memory or concentration, sore throat, muscle pain, joint pain, tender cervical and armpit lymph nodes, headaches, unrefreshing sleep, and sort of the one that many doctors won’t prescribe without is the post-exertional relapse that Nancy spoke about: when the patient exerts themselves either mentally or physically they have a payback. Usually it sets on within 24 hours; it may last days.

FG: Let me ask Dr Lange about cognitive dysfunction. I didn’t hear that in the list of the eight things from the CDC. What about that, Dr Lange?

GL: Cognitive dysfunction is experienced by about 85 percent of patients who have been diagnosed with CFS, and so therefore it makes it the cardinal symptom outside of fatigue, very often. They commonly refer to it as brain fog.

FG: In a day to day sense, how would a patient experience this brain fog?

GL: For instance, if a CFS patient decides to go shopping for the day or the week, which is a normal activity – most of us can do that, no problem – they set out, go in their car, they walk into the supermarket, they may have a list, they may not have a list, but very often they get into the supermarket, they look at an aisle of products, they get confused, they forget where the list is, they forget what they wanted, they have just problems keeping everything in line.

FG: Is this the kind of thing that they can expect to happen all the time?

GL: It fluctuates.

FG: Kim Kenney, you yourself don’t have CFS, but you have an organisation that advocates for people with the diagnosis. How does this illness affect people’s lives in an everyday sense?

Kim Kenney: Most of them are living fulfilling lives to the extent that most of us do:  they are working, they have families, they are engaged in their communities. One day they fall ill, they think it’s the flu, they go to bed, and fifteen years later, that’s where they still are. They watch everything around them slip through their fingers. Hopes and dreams for the future have to be put on hold or significantly revised. The financial implications of losing a job, of digging into savings, of taking what meagre benefits you can get from either private disability or social security and trying to make them stretch to the places which your former income did is all quite a demeaning and discouraging experience. And then you take this illness which is poorly understood, which few doctors know how to effectively help in terms of symptom relief, and it is … If you didn’t end up with depression or feelings of loss it would  be quite surprising, because this illness takes everything from you that you once held dear, and that’s something I hear constantly.

FG: Who gets this it? Males, females, social class …?

KK: This illness really cuts across all boundaries. The risk factors are women get it more than men, it seems to be more prevalent actually in African Americans and Hispanics than it is in whites or Asians; we don’t know why. Middle age, about 38 – 45 is where the greatest peak of prevalence is, although you can get this in your later years, you can get it in … adolescence is where the onset for most kids is.

FG: How many people recover?

KK: Only about 12 percent seem to recover and even that 12 percent have symptoms they have to be very careful to watch for and know that they’re either overdoing it or moving into an area where they could easily relapse.

FG: Could we go back to you, Nancy Klimas. It’s almost like an unsolved detective story. How have researchers gone about piecing these various clues together?

NK: It really started in the late 80s with some papers which showed that the patients had states of chronic immune activation. So we thought maybe that’s the whole story. But then as more disciplines came into the field and started looking, there was some very interesting pieces of the pu zzle put into place. One is the autonomic dysfunction in CFS. This is basically the centre of blood pressure control, among other things. You heard Gudrun told the story about the patient who gets brain fog in the grocery store. Some of those patients, probably most at that moment, are developing a sudden drop in their blood pressure, where suddenly they’re not perfusing their brains, the blood’s not there. One of the things we can do clinically for that is work on that; that’s something you can actually treat, you can try to get the blood pressure to normalise by teaching the patient how to modulate their lives a little to have fewer of these episodes, not to be upright as long as they’ve been, and also to increase the salt in their diet.

FG: Now what about the hormonal part of this?

NK: That’s an interesting story because it actually came out of the fight about whether or not this was a form of depression. In depression one of the biological markers is an increase of cortisol production. The adrenal gland gets big, and it makes more cortisone than is normal. In CFS the adrenal gland is quite small, it’s smaller than normal, and it’s making less cortisone than is normal.

[Back to Top of Page]

FG: I think the thinking is,  both these differences are coming from the brain, in terms of how much stimulation the brain is sending, right?

NK: Exactly. And it seems to come from the hypothalamus, which is Grand Central Station in terms of being in charge of things. And I think the hypothalamus is going to be the most interesting area of research coming up in CFS as we try to tease apart all these findings.

FG: So the pieces look like they’re beginning to coalesce, if not come together?

NK: I like to think of it as the old elephant story. Three blind men come up to the elephant, one grabs the tail and one’s at the trunk and one’s at the leg and the one at the trunk says “Oh, I know what this is, this is a snake”. And the other one says “This is a tree”. And so on. And that’s how we’ve been with CFS. The immunologist comes up to it -  myself for instance, I would say  “This is clearly an immune dysfunction state”. And the endocrinologist says “Oh no, it’s the adrenal gland.” And the autonomic guy says “No no, it’s all blood pressure, what are you guys talking about?” We actually get into fights about this at our meetings, when in fact the truth is, it’s all of those things and these chemicals we’re talking about inter-relate in a profound way.

FG: What about these viral triggers that may set off this immune activation? You hear a lot about Epstein Barr Virus that you can measure in the spinal fluid.

NK: You’ve got to think of infectious diseases in two different ways. One would be in inciting infection. That can be any number of illnesses that are infectious that could affect the immune system in a way that would cause a profound amount of immune activation. So there are certain viruses that are particularly good at that, like Epstein Barr Virus, a great example of a polyclonal activator – a virus that can turn on the whole immune system. And any of the other herpes family viruses would certainly fit into that category. But there are bacteria that can do it, and parasites can do it, and I think the ‘on’ button in CFS, and this is my own theory – is any profound immune activating event.

      Then you have to ask, why does it persist? Why doesn’t the immune system make it all better, like it does usually with these types of illnesses. And then we get into the genetics of CFS, which is that it looks like there’s a strong genetic potential, or a predictability for CFS. And then you start wondering, is it a chronic persistent infection? That’s conceivable, at least theoretically. Is it an autoimmune phenomenon, something that once you’ve turned it on you can’t turn it back off again? Or is it a situation where the immune system was damaged with that first infection and your old latent infections, the baggage we carry for the rest of our lives, our childhood viruses we can’t completely clear but keep suppressed most of our lives? Probably the reactivated virus theory is the most popular one right now, and the virus people are looking most intently at is the virus called HHV-6  virus, that’s the virus that causes measles when you’re a child, and is one of those latent baggage viruses. That’s the one they’re finding in the spinal fluid of some of these patients.

FG: Kim Kenney, let me understand something about the history. We didn’t really hear about this illness until the late 80s. Do you have a feeling it’s always been there, it’s just never got named, or do you think it could be something that’s emerging: new viruses or new toxins?

KK: There’s certainly evidence in the literature to suggest there has been a form of this illness going back, some say, to the Bible: there are references to a CFS-like illness. So we really don’t know. The name has changed over the years, and may continue to change in the future as we understand more about this illness. But certainly, it’s probably not a new illness.  

(End of Infinite Mind interview)

[Back to Top of Page]

Chris Laidlaw: The Duchess of Kent, Andrew Lloyd Webber, many famous musicians, artists and writers have suffered from CFS. American singer Janis Ian contracted it in 1988. She was home bound for three years, and she wrote a song about it called Days Like These.

      Estimates of the number of people with CFS in NZ are hard to make – we just don’t know. But many people tend to know someone who has it, or has had it. Dr Ros Vallings is a GP in Howick, and 80 percent of her patients suffer from chronic fatigue. Most are referred to her by other GPs. Dr Simon Hatcher is a senior lecturer in psychiatry at Auckland University, and he’s looking at how stress can play a part in the onset of the illness.

Simon Hatcher: One of the things that happens when you talk to people with CFS is that they’ll often tell you quite interesting stories about the nature of the stress they’re under before they started with their CFS. I used to run chronic fatigue clinic. I was quite intrigued by some of the things these stories had in common. And some of the research we’ve done has looked at this whole idea of a particular type of stress – types of dilemmas people  seem to be under just prior to their CFS, prior to its start.

CL: These are decisions – life decisions – that people are faced with, is that what you’re  talking about?

SH: Yeah, a dilemma. There is is problem, a predicament, if you like, where you’re damned if you do and damned if you don’t. So either choice you make has got negative consequences. A common one would be somebody who’s stuck in a bad marriage but can’t leave. And one of the few ways you can solve a dilemma would be to, in effect, do nothing. If you put animals  in situations where they’re faced with that choice they’ll do one of two things: they’ll either stand still, or they’ll try to escape the test box.

CL:  And humans are exactly the same in that respect? (That’s right.) But how does that  then trigger off something else? There has to be, presumably, a viral condition or some other medical impact in order to create it, doesn’t it?

SH: That’s right.  And one of the difficulties we have with this whole area -  and it’s not just CFS, it’s irritable bowel syndrome, it’s some forms of headaches, lots of different disorders -  is we don’t have a very good language of thinking about disorders which have both emotional and physical aspects to them. We have a language which distinguishes between mind and body, physical and psychological, but it’s not a particularly useful way of thinking about things. It often generates blind alleys when you have conversations with people about what caused their illnesses or what treatments are effective. It’s probably better just to think of symptoms and not distinguish between them in terms of whether they’re emotional or psychological or  physical symptoms.

CL: Ros, there’s a checklist of symptoms, isn’t there, of symptoms that you as a practitioner run through. It’s a process of elimination.

Ros Vallings:  It’s a kind of research definition, actually, that was established by  the Center for Disease Control in the United States , and to make a diagnosis you have to have excluded other likely illnesses with similar symptoms. They have to have been chronically tired for six months at least, and they have to have four of a set of eight symptoms consistently, which are not explained by other pathology, and there are a number of conditions whereby you couldn’t make this diagnosis because it would be very hard to distinguish. It’s a kind of process of elimination in many ways.

CL: How important is the diagnostic process? It is clearly a hard thing to do and takes quite a lot of time.

RV: I think people like to have a diagnosis, because many of these people that I see have been from physician to physician and they haven’t had a diagnosis, and it’s very helpful to people for someone to be able to say “Well, it sounds as if this is what you’ve got.”  Even though they might not like to have that diagnosis, at least it’s better than everyone saying “Well there can’t be anything wrong with you.”

CL: Yes, there’s a certain amount of stigma associated with it, isnt’ there? Inevitably. Someone who’s just tired, but you  can’t find anything wrong …

RV: I think the stigma is decreasing, because we have much more recognition of this... As Simon said, we have things like irritable bowel under the same umbrella, and we have a lot more recognition medically of these kind of illnesses, and there’s a lot more education for doctors, a lot of journal articles being published and a very large body of research, so … the stigma is beginning to decrease, for sure.

CL: What sort of scale is it in this country? Is it on the increase, or is it being identified and tied down a little more exactly?

RV: I don’t think it’s on the increase in that most of the figures quoted world-wide are in the region of two to four people per thousand will get it. There doesn’t seem to be an increase. I think we’re just diagnosing it more efficiently, or maybe people are going to the doctor more often. I’m sure in the Victorian era people didn’t go to the doctor and complain of tiredness; they just lay on the couch all day.

CL: I imagine that some people who suffer from it also suffer from a certain amount of guilt, particularly if it hasn’t been diagnosed. The doctor says “Well you’re just tired”, and I assume that happens a bit. Can guilt at lying around be an exacerbating factor?

SH: Not as far as I know. Shame, sometimes. It’s difficult for people sometimes to be in the presence of others without a significant marker on their body that they’re ill. They can look well, they don’t have a plaster cast on their arm, and I think there is sometimes shame and embarrassment, perhaps, about being unable to do things but without having an obvious physical change.

CL: There’s been some considerable debate about the name itself. CFS. It implies tiredness; it doesn’t seem to imply a medical condition. Is there debate about whether the name ought to stay or go or be replaced by others?

[Back to Top of Page]

RV: I have been to a number of conferences about this illness and at every conference there’s always huge debate about it. But I think although the name doesn’t appeal to the patients at all, in fact many of them hate it, it’s probably medically quite accurate until we understand more of the underlying pathology.

SH: The great advantage of the term is it doesn’t assume a cause; it just describes what is.

CL: What’s the average length of the illness? I know it varies from a short period to many, many years, but is an average beginning to appear?

RV: Well I see a lot of young adolescents with this illness often following glandular fever, and for that age-group, assuming they’re diagnosed quite early on, the recovery seems to be quite good and we’re looking at a two to five year time frame. But as you say there are many, many people around who claim to have had the illness for very much longer, and some people who are very severely ill over a long period of time, and I think the statistics are very hard to gather, because we have to be sure that they’re talking about the right diagnosis and a lot of people that I see, we end up with a totally different diagnosis. And they may have thought for many years that they had this condition, and sometimes we find that they have something else wrong with them.

CL: You tend to specialise in patients who are suffering from this, but very few doctors, I imagine, do. How responsive is the medical establishment in this country to it?

RV: Most of my patients are referred from other doctors and there doesn’t seem to be any hesitation in making the referral, because, I think, other doctors find these patients very demanding on time, because it does take a lot of time to talk to them regarding diagnosis and management. But I’ve talked to a lot of groups of GPs around the country and they’re very receptive.

SH: The broader issue is that the problem of symptoms which are hard to explain, hard to diagnose and quite frankly, hard to suffer from is  a common problem, which is increasingly being recognised by medical professionals and the health system, but it still isn’t very well managed, and CFS is really just part of that.

CL: So it isn’t a public health issue per se?

SH: It is really, because people who present to the doctor with symptoms which are hard to explain, don’t fit into a pathological disease to explain them, are very common. If you go to any outpatient clinic in neurology or cardiology you will find that a large proportion – we’re talking about a third to a half of those people – won’t have any organic disorder to explain their pathology … their symptoms. CFS is a particular example of that.

CL: With life becoming more and more stressful, presumably we are going to see more and more cases triggered off by stress, or people who suffer from stress and who are going to fall into this syndrome. Is that an accepted premise?

SH: Well, stress has been around for a long time, and stress is involved in lots of other disorders apart from CFS, classically people with heart disease; there is a link between external stress and having heart disease. It doesn’t mean that heart disease is somehow psychological or doesn’t exist. It’s clearly real. Stress is both a stimulus and a response and one of the things that people are getting better at, I think, is actually identifying and managing stress better, so they may be under the same amount of stress but they may be able to manage it better.

CL: What about the increasing incidence of different strains of flu? Clearly flu plays a role in removing people’s immunity and reducing their ability to withstand other problems. Now that we’re facing an almost endless supply of flu bugs that we don’t seem able to treat isn’t that going to create more conditions leading to this syndrome?

SH: Why anybody gets any particular illness is a complicated and difficult question to answer. Consider TB. One of the things you need for TB is the tubercle bacillus, but most people exposed to that don’t actually get TB. There needs to be a mixture of other things, like poor nutrition, often other indicators of poverty for people to get TB. It’s the same with flu vaccines; you need to be exposed to the flu vaccine, but other things need to be there at the same time. People have done studies of this at the Common Cold Research Institute in the UK , where they deliberatley innoculate people with different viruses. You volunteer to go there and they measure the amount of stress you’re under before you go there, by various means, and then they innoculate you with different viruses, and it’s very clear from the studies they’ve done there that what determines whether you get the symptoms of a cold to a large extent depends on how much stress you’re under. So it’s not just being exposed to the virus which is important.

RV: I think the other thing is I see a lot of sports people who are training very hard, and they’re putting their bodies probably under enormous physical stress, as well as the emotional stress of performing at a very high level. And I think, too, there is the issue that they may well get an infection and just not give in, because there is a huge pressure on them to continue training, so you get an almost like an overuse syndrome which is CFS, and  I think that sort of pressure in our lives is much more common now for sports people.

CL: Do you deal with sports people who’ve got CFS?

RV: Yes, I see quite a lot of them.

CV: What is cognitive dysfunction? That’s a medical term, I assume; a psychiatrict term, isn’t it? That seems to play a large part in this.

RV: I would describe it … the way my patients describe it is brain fog. They’re reading something, or a student may be studying something, and suddenly they reach impasse that they just cannot progress; their brain seems to fog over and they find thought processes very hard. And certainly some of the Japanese research has shown that when people with this illness are either exercising or concentrating very hard, there is some diminution of the cerebral blood flow through the brain, and this may be playing a part.

CL: So it can be a contributing element? It’s not necessarily always there?

RV: It comes and goes. I think many of the symptoms come and go. That’s why it’s a very hard illness for people, because they often feel reasonably good; they’re going through a reasonably good phase, and of course the human tendency is to really overdo it to the point where maybe they push themselves far harder .. because they feel they must achieve during the window of opportunity, and then they’ll push themselves too hard and crash in a heap.

[Back to Top of Page]

CL: Are there some symptoms like weight loss, sleep problems, which are obviously more significant than others?

RV: I think sleep problems particularly. I very rarely see anyone with this illness who doesn’t have some kind of sleep problem, but often they will say “Oh I sleep and sleep and sleep,” so they don’t identify it as a sleep problem, but in reality even after maybe 14 hours of sleep they’re not refreshed, so they do then have an identifiable sleep disorder.

CL: There have been suggestions that CFS is more common among women than among men, or that more women seem to be diagnosed. Is there some significance in that?

RV: I think the balance is actually becoming more … it’s not quite fifty-fifty in most of the studies that have been done, but we’re looking at about 60 percent female, whereas when I first started working with this disorder we hardly ever saw a man with it. But I think that was perhaps because men don’t tend to go to the doctors of often. When we’re looking now at the figures it’s about a sixty-forty split, and there’s possibly a little bit of a hormonal influence with some of the women.

SH: And the sex story’s quite interesting, because although that’s the situation at the moment, during and just after the First World War there was an epidemic of what they described as neurasthenia, which, if you read the contemporary accounts, is very similar to CFS. And of course it was very common in men, just before and just after the First World War. And of course the stress the men were under was when they were soldiers, was whether to obey their orders, which almost certainly got them shot, or preserve their life, which inevitably got them punished and perhaps shot as well, by their own side. So they were stuck. That’s a classic dilemma where both choices have negative consequences. And it does inform, perhaps, the nature of the stress which seems to be particular to this type of illness, or contributes to it.

CL: What sort of research is being done on the stress factors?

SH: One of the things we’re doing here at Auckland University is to look at functional brain images of people who’ve got CFS and to see if the way they deal with stress is different from people who haven’t got CFS. So we give them often a theoretical problem, a dilemma, and see whether they manage this under the scanner differently to control people. We’re still in the early days of doing that research at the moment.

CL: I assume that in the long run the research will narrow down the causes. I mean the field will narrow very significantly over time.

RV: I think what a lot of research is showing is that CFS is a bit of an umbrella term, and most of the research into the physical aspects of the illness are really showing there to be a number of subcategories, some of which depend on the way it starts, some of which depend on the longevity of the illness and so on. So I think although in some ways it’s narrowing down, in some ways it’s broadening the scope enormously.

CL: The issue of recovery – treatment. I understand in the United States there are dedicated centres for recovery for patients suffering from CFS.

RV: Well they’re beginning to try and establish them. I was in Wisconsin about six months ago, and there was a particular researcher there, David Bell from New York State, and he is very much pushing for the development of what he describes as centres of excellence where people can go and be properly managed with this illness, and I’ve visited two or three centres recently in Britain where they’re doing some very good work.

CL: And presumably if you’re with other people suffering from the same thing there’s a sense of solidarity and mutual reinforcement. People understand that this is not just the problem of an idler.

RV: True, but I think at the same time you find … If you take support groups, for example, some are very good and very positive, and they have professional input. Others can be very negative, with people just talking about their symptoms and becoming very sort of deeply engrossed in their health, rather than perhaps getting out and doing other things.

CL: You suggested funding is drying up. Is there a commitment in the health system to publicly fund treatment for this?

RV: No. I don’t think so.

SH: I think the way it will go is once or if there is some recognition of the whole problem of people with hard-to-diagnose, hard-to-treat, hard-to-explain medical symptoms, it will get funded as part of that. Because there is a vast amount of money spent on unnecessary investigations and unnecessary preliminary treatments for people who have medically unexplained symptoms in this country.

CL: And presumably the cost of medication for somebody who’s trying to find, via the GP or just by themselves,  a medication that would pin one of other of these conditions down, must be prohibitive.

RV: Well, I think there is very little in the way of medication as such that specifically targets this illness. As Simon said we’re looking at a management issue of a whole lot of illnesses. I think one can treat symptoms such as helping deal with sleep disorders and doing things for pain, but certainly there are some medications around that are hugely expensive that people want to try, but I think on the whole it certainly doesn’t fix the condition; it may give some relief to a small percentage.

CL: And presumably they ask your advice on what they ought to take? If they’re suffering from a collection of problems, probably you give them a cocktail of drugs, or do you not?

RV: No, not necessarily. I think when I’ve diagnosed someone we look very much at lifestyle and things like sleep management, gentle exercise plan, care with their eating … try to get them to live a very very healthy lifestyle within the constraints of their illness, which then one can sometimes build on, and then we look at individual symptoms and try and treat them, and sometimes it is appropriate, for example, to use antibiotics and other things to alleviate a particular maybe complicating factor. But on the whole there’s no specific magic bullet that one can pull out of a hat and say “Well this will fix you”.

End of interview