Radio New Zealand Program, 12 May 2005 - M.E. Awareness Day

This half hour program about Chronic Fatigue Syndrome, presented by Wayne Mowat, consisted of a discussion with Auckland GP Ros Vallings, ME sufferer Kathryn Harris and numerous callers.
Transcribed by Tarryn Lee for ANZMES

Download MS Word version of transcript below (67kb)

Interviewer: Wayne Mowat
Dr Ros Vallings: GP from Auckland
Kathryn Harris: ME Sufferer from Auckland

Wayne: Today is Fatigue Syndrome Day. We are discussing the facts and symptoms of Myalgic Encephalopathy / Chronic Fatigue Syndrome, now accepted by the vast majority of clinicians working in the field as being a real and organically based disease, although it is still poorly understood by a lot of people.  What is ME/CFS? Well today we are asking Dr Rosamund Vallings, a GP who specialises in the syndrome and regularly attends international conferences keeping up to date with the most current and respected research regarding ME/CFS; and Kathryn Harris, a hardworking, well-educated young woman who was struck with ME not long after graduating with a law degree and starting her first job. Rosamund Vallings good afternoon to you.

Dr Ros Vallings: Hello.

W:       And Kathryn, hello, thanks for joining us in our Auckland studio.

Kathryn: Hello, Wayne, thank you for having me.

W:       Any calls to us please on 0800 65 33 89. Well, Ros Vallings, let’s start at the beginning. A reminder please of what ME/CFS is, and how it affects people.

R:        Well it’s a chronic condition, which usually follows a viral illness of some sort, it can be any virus that triggers it off. The immune system goes into overdrive to fight the virus, and it usually successfully does that. But instead of settling down after a week or two following a viral illness, it seems to remain chronically activated in certain parts of the immune system, which leads to fatigue and a lot of ongoing symptoms which can last a very long time.

W:       So it’s the immune system that gets upset or changes.

R:        Well the current research would indicate that that’s the most likely thing going on.

W:       But it’s a whole lot of other things besides, isn’t it?

R:        Well it creates a lot of symptoms. The person will feel very very tired, and it’s more than just a sleepy tiredness - it’s a total body fatigue. There will be a number of symptoms such as headaches, sore throats, enlarged glands, aches and pains in the muscles and difficulty to do anything other than very minimal amounts of exercise, joint pains quite often, and a number of other symptoms. We’re looking at a lot of subcategories of the illness, so different people will have different groups of symptoms. The symptoms tend to come and go. They can go through quite good phases, and then have a major relapse because they overdo it physically or have a major stress in their lives.

W:       Mm, because when you look at the list, there is muscle, skin and joint pain, and then you get loss of concentration, non-refreshing sleep, all sorts of things.

R:        That’s right. The list goes on and on. I think we begin to be able to see probably about eight different symptom categories that occur most commonly.

W:       And how long do they stay around?

R:        Well, it can vary. Some people do recover quite readily after about… we can’t diagnose it until they’ve been out for six months, but some will recover soon after that. Others may recover somewhere between three and five years, that would be the average time for recovery assuming a person is going to recover. But some people do have an illness which drags on and on for many years, and some people are very very sick with it. But others can perform at a reasonable level.

W:       So it’s different for different people. Kathryn, we’ll get your story now. So what happened in your case?

K:         Basically, it was completely unexpected. I was at work one afternoon and I bent over to pick something up and felt a little bit dizzy. I went for a lie down and didn’t feel any better. And basically I went home that day, and I still haven’t been able to go back to work since, and that was over five years ago now.

W:       Gee whiz. So everything, your whole life, just turned upside down.

K:         Completely changed. I’m at a stage now where in the last year I’ve actually been feeling a lot better. I’m not quite well enough to work part time yet. But what I want to emphasise today is just how painful and life destroying this illness is for a lot of people. And they’re basically forgotten people of society, just because they are so sick, and can’t function properly, and they can’t interact socially, and are in a lot of pain, they are just forgotten about. And it’s about time I think that someone started putting money towards research for this illness, to find out what causes it and how we can cure these people.

W:       That’s the human tragedy.

K:        It is.

W:       Why do you think you’re getting a bit better?

K:        I don’t know, it’s completely random. There’s no reason for me getting better. For four years, I was basically this thing that just lay in bed and I was pretty much confined to my house. I couldn’t go anywhere. I couldn’t do anything, and I was in immense amounts of pain. It was absolutely ridiculous. I don’t know why I got better, just all of a sudden I started to pick up and in the last year it’s just been a gradual pick up happening. It’s been one of the most wonderful things for me, and I’m very lucky to have this happen to me, because a lot of people don’t recover from this illness.

W:       Do you know how you got it?

K:         No, I have absolutely no idea. It just happened. I didn’t have a viral infection just before I got ill. It was just like I said, I just had a dizzy spell at work, felt a bit funny, and haven’t been able to go back since.  

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W:       Come back to you in just a moment. Beverly from Christchurch.

Caller 1 (Beverly): Hello, I just wanted to say I’m a fellow Chronic Fatigue Syndrome sufferer and I’ve had it since 1986. And something I just wanted to share with your listeners was someone said to me at Christmas time, ‘Have you thought about having a gluten intolerance test done?’ So I did that. I’ve completely changed my diet, and now I think my husband, who’s never known me without chronic fatigue, thinks that he’s found a whole new wife, because I have energy, I can stay up beyond 9:30 at night, I can go for a swim, I can handle stress. And I just wanted to say maybe that might be a contributor to some other people as well.

W:       Sure, great call Bev. Thank you, stay on there. Ros Vallings, is this common? I mean a lot of people get tested for all sorts of things when they get this illness.

R:        Yes I think when people get the illness they get many many tests done. Certainly those gluten tests would be commonly done now in people who have any bowel or stomach complaints associated with it. I think that the thing to say is that we are finding more and more people who have thought they had Chronic Fatigue who we’re finding they have other things, and so in fact they no longer actually fit the criteria for diagnosis of Chronic Fatigue Syndrome. I think Chronic Fatigue Syndrome is a bit of an umbrella name that covers an awful lot of fatigue states. And they are all being sorted out now. There is a lot of research that shows that there are many many different subgroups of this illness.

W:       Kathryn were you ever tested for other things?

K:         Oh yes… Coeliac disease is also another illness which is just a simple blood test to see if you actually have it, which has symptoms similar to Chronic Fatigue Syndrome. I’ve been tested for everything. Apparently, there is no reason why I should be sick, but I am sick. And if I could just add as well, Television New Zealand actually on one of their programmes, "Eat Yourself Whole" I think it was, they were dealing with a girl who was said to have suffered from Chronic Fatigue Syndrome, but she could have been a Coeliac as well. And a change in her diet showed a huge improvement in her symptoms. It is a completely separate illness, and if you change the diet of people who actually have ME it’s not going to have the same effect. They are actually distinct separate illnesses.

W:       But Bev you were not tested for other things until recently, and after almost twenty years of this.

Caller 1 (Bev): Ah well… back in 1986, it was the early days, and it was a very difficult illness to diagnose, and it was almost diagnosed by default really. So, at that time I wasn’t diagnosed for gluten. And I’m not saying I’m one hundred percent better, but I’m certainly a lot lot better so whether there is an underlying chronic fatigue there that has got partially better, I don’t know. But I just really wanted to share this, because I feel as if I’ve found a whole new life.

W:       Yep, well good on you, and thank you for your call.

Caller 1 (Bev): Thank you.

W:       Bev in Christchurch, interesting story. Gordon in Wellington. Hello.

Caller 2 (Gordon): Good afternoon. I just thought I’d tell you my story. I’ve had ME for about twenty years.

W:       Same as Bev.

Caller 2 (Gordon): I used to be a fit tradesman, and then all of a sudden I couldn’t do a thing. I’d just end up crawling around on my hands and knees. And since then I’ve been absolutely fatigued. I get pains all over the body, muscular and nerve pains, shooting pains. I was over the edge. I’d had every test you could think of. And I also used to just collapse at any time. I’d just keel over, just crumple, sit down, especially when around chemicals and perfumes and so forth. So it’d knock me out at this stage, and as I said I’ve had been out of it for twenty years now, and I was a fit fit tradesman.

W:       So... you’re no better than you were twenty years ago.

Caller 2 (Gordon): Probably a little bit better. The fatigue… not quite so bad, but the pain, I lose many hours sleep, because the pain goes right through the body. It’s not joint pains, its muscular pains and also nerve pains, and they just hit you anywhere, at any time, for no reason whatsoever.

W:       How many people like Gordon are there in New Zealand do you reckon Ros?

R:        It’s hard to put a figure on because it’s not a reportable condition. And as I say there are an awful lot of people who think they have got it, but may not. The incidence worldwide in most of the studies showing about four people per thousand who will get it at some stage during their lifetime.

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W:       Caroline in Christchurch, your call please.

Caller 3 (Caroline): Hi, I’m 23 years old, and I was diagnosed in 1999, and pretty much my life has just been miserable since I have had it. I’ve had it for so long. And I just find it very hard for my age group to understand what it’s like.

W:       So what’s your daily routine? Can you just give us a rundown.

Caller 3 (Caroline): Basically, I have quite a big sleep in. But on days when I get up, like the other day I got up at 9:30, but I just feel so tired, like I haven’t had any sleep. People think that you’d be able to sleep at night, but I wake up four or five times during the night, I just cannot… it’s just awful. And then I wake up, I have breakfast, I’m tired after that.

W:       Do you feel hung-over?

Caller 3 (Caroline): Yeah a little seedy, bones aching, throat sore. Just feel generally so lethargic, I can’t do anything. Maximum of fifteen minutes walking a day which just buggers me.

W:       So do you have periods when you actually feel like you can do things?

Caller 3 (Caroline): There are times when I can maybe at a push do the vacuuming, like just a very small room. Otherwise, not a hell of a lot, which is very hard for me, because all my other friends are doing lots of stuff and they think that I should be out there maybe try part-time work. I’ve tried that. I’ve had five or six jobs where I’ve just had to quit. I just can’t handle it.

W:       That’s the hard part Ros. These people are picked on, because they’re just not with it.

R:        Yeah, well I think that the people who have this illness, they have problems with their brain and thinking ability, very slow sluggish thinking a lot of the time, coupled with the physical difficulties being unable to do more than a minimal amount physically.

W:       Caroline, like some of our other callers, have you been tested for other things?

Caller 3 (Caroline): Everything. And I’ve had everything done to me.

W:       Have you tried alternative things?

Caller 3 (Caroline): I’ve tried iridologists, tried homeopathic people, I’ve tried injections, I’ve tried everything… lots of herbal stuff.

K:         Can I jump in here Wayne?

W:       Yes, please do Kathryn.

K:         I think Caroline’s story probably illustrates very well the plight of a young sufferer here. She probably finds it very lonely, I don’t know.

Caller 3 (Caroline): Yeah, I do find it very lonely.

K:         But a lot of her friends she might find, they just don’t understand the illness at all. And as a result, I don’t know if you’re anything like me, you’ve lost a lot of your friends, people you thought you’d be friends with for life, because they simply can’t handle the illness themselves. And they get too busy to come and see you, and deal with you, because it’s just too hard for them. I think it’s hard for young people to actually understand that an illness can be so physically debilitating and life destroying. And it makes it very lonely for suffers. We become masters of loving our own company, simply because nobody else has the time to come out and say ‘Hey can we do anything for you, can we do your housework for you this week, can we do your shopping this week?’ Because these are the things that ME sufferers can’t do for themselves.

W:       So Ros, there we have two young people - Caroline in Christchurch still very ill, Kathryn who’s getting better but doesn’t understand why. So what is going on? What are they saying internationally about this?

R:        Internationally there is a lot of research going on. My patients get very frustrated because so much of the research focuses on looking for a cause, but I think, until they can really unravel the cause, and we’re talking muscle problems, neurological problems and so on, until they can unravel the cause, it’s going to be really hard to formulate a firm treatment. There is a lot of things one can do in managing and helping people to improve their health. And a lot of people who have had this illness for a long time have never had a proper diagnosis, so they haven’t necessarily been given the right advice, so they may not realise that pushing themselves too hard can cause relapses and things like that. So, I find there is a lot one can do for these patients, and there is a lot of research going on.

W:       But we need more behind it don’t we, as Kathryn said at the outset.

R:        I think money always counts with research. But even if you look at the States, where probably a lot of money in some of the bigger centres is going into research, it’s still going to be a very hard long road. It’s not an easy condition.

W:       GPs understanding it more Ros?

R:        I think there is a growing understand, and a growing awareness. I certainly talk to lots of groups of GPs, and they are very very interested. And the ME Society here sent out information to all GPs in New Zealand about a year ago. And that was a very informative booklet produced in Britain, as guidelines for management of this illness. So GPs have got the opportunity to learn, but of course, there is so much to learn in medicine, you have got to go in the direction that mainly where your interests are.

W:       Caroline, obviously your GP has seen you a lot?

Caller 3 (Caroline): Yes, she has seen me a lot.

W:       And it must be frustrating that you just can’t get to the bottom of this.

Caller 3 (Caroline): Exactly, I’ve looked at other GPs, looked around, but they’re all fully booked.

W:       Yeah, how about you Kathryn?

K:         I was actually very lucky to have a very good GP.  He actually referred me on to Ros Vallings. When he worked out that he had done all sorts of exhaustive tests, and thought that ‘I don’t know what’s wrong with you, why don’t you go see this lady who specialises in ME and Chronic Fatigue Syndrome and viral disorders like that.’ So as far as medical stuff goes, I’ve actually been very very lucky.

W:       So, what have you done to her to make her feel a bit better Ros?

R:        Well, I don’t expect it’s anything I’ve done at all really. I’d love to think it was but…

W:       Well, what I mean is what’s the treatment? What’s the medication?

R:        Well it’s basically good general lifestyle approach is important. Things like sleeping properly, eating properly, minimal amount of exercise, freedom from stress. All the everyday stuff that we know is really important for managing any illness really. And then I think certainly we do use medication sometimes for treatment of sleep and pain, because both of those areas are extremely debilitating and distressing for people. And most of the researchers will say until you get sleep right with this illness, nothing will come right because most people with this illness do not get their deep level full sleep, which is sort of the healing part of the sleep, when we naturally self-heal. So I spend a lot of time focusing on sleep and certainly pain in particular, because pain will obviously interfere with sleep and create an enormous amount of stress. And all these things tend to make the illness worse I suppose, worse to cope with.

W:       That’s the hard part according to Caroline is getting to sleep.

R:        There are a lot of medications being trailed now, some of which are very expensive. But again we are looking at subgroups of people and there are a lot of things we can try, depending on the person’s particular symptoms.

W:       Right, do you put on weight? What are the other side effects?

K:         Yeah, it depends really. In my case, I put on about 30kgs. I’m just managing to start to lose that again.

W:       Because you can exercise now?

K:         Yeah it’s absolutely devastating. I wasn’t eating badly. It was just that I was basically curled up in a bed all day and I don’t know what happened to my body but it just decided to put on weight.

W:       So is exercise good or bad for this syndrome?

R:        I think we know for sure that people who do absolutely nothing and don’t move a muscle, they don’t do very well, because they just get very very weak. But people who push themselves hard with exercise, and certainly sports people, they have got this mental thing ‘I must get back on the rugby field’ all the time, and they push themselves very hard, and they relapse very readily. And I think there is a very fine line between not doing enough, but doing too much. I certainly encourage my patients to do a very gentle brakes-on-hard type of exercise. Maybe some of them just literally walk to the letterbox and back. Because I think if you don’t use your muscles at all, they do deteriorate, but we have to be very careful to hold people back from the crash-and-burn approach, where they try a bit too hard, and spend the next three days flat on their backs.

W:       It sounds though that this is something that invades the whole person, the DNA almost, in that it’s got to go all those years before it will disappear. I know that sounds trite, but is there something in that?

R:        For some people it does seem that it lasts a long time, and then for no obvious reason, except perhaps they are managing their life better, they do begin to recover, so it’s almost like something burns out. Maybe some underlying viral issue that we don’t understand. There will be some people though, who no matter how hard they try, they just cannot seem to make progress, and in fact go through a very long severe illness, with not a lot of light at the end of the tunnel. But I would emphasise particularly for maybe very young people listening, that the best chance of recovery is youth. And I have a lot of people, very young people, teenagers, who do seem to be more likely to get better than the older patients. I think the powers of recovery become less.

W:       But it doesn’t discriminate though does it?

R:        No, the illness doesn’t discriminate.  

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W:       Okay, Elizabeth has been waiting patiently in Palmerston North. Thanks Elizabeth. Your point please.

Caller 4 (Elizabeth): I’ve been clinically poisoned as a nurse. And I can agree with everything that’s been said.

W:       So it started there and then this other thing came on.

Caller 4 (Elizabeth): Yes it all seemed to be part of it. Some of us seem to maybe have more propensity to be affected by chemicals, and it has the massive fatigue syndrome. I think the managing of your life is very crucial. I think the comments being made about doing very gentle exercise and doing it gradually is really important. But it’s very lonely.

W:       How are you now though?

Caller 4 (Elizabeth): Well… I manage well, is the best way to put it. I can sustain about two full days a week, I suppose, and can look after myself, if nothing else comes along to throw me off key. But it’s very isolating. I can’t live in town because of fumes. I have to live in the country. The fatigue is massive, and you can’t keep up with your friends, you can’t go out, you lose your job and your income. So it’s a bit of a vicious circle really.

W:       Well thank you very much for calling. That’s a bit of a typical case you see all the time Ros. I hate to think of the cost to the country.

R:        Yes, there will be huge costs to the country. I know that in the States and in Britain they’ve done estimates of billions of dollars lost to productivity, and then of course there are the many many medical costs incurred.

W:       Can these people get on a sickness benefit?

R:        There is no problem getting on a sickness benefit, assuming they’re not well enough to work. I think New Zealand is one of the few countries where we are actually relatively easy, and that’s quite unexpected for some people when I tell them that. This diagnosis is readily acceptable by Work and Income for sickness benefits. The doctor needs to sign the forms, of course.

K:         I want to say though that it’s not easy to get home help. Home help is practically denied to most people who have ME.

R:        You get the sickness benefit though Kathryn?

K:         I do, yes, but there are a lot of people out there who are very very sick who are denied home help.

R:        I think home help is a really difficult issue, not just in this illness, but in many illnesses, because you have to be assessed and fit certain criteria, and many of these patients with this illness are actually too sick to go and be assessed. And that’s quite a problem really.

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W:       We’ve got a call from Richard in Christchurch. Hi Richard.

Caller 5 (Richard): Hello, I’ve been listening to the programme with great interest. I recently developed a relationship with a lady who has had CFS for seven years. And we found some treatments, alternative treatments, which have made her much better, starting in late February. Do you want to hear about those?

W:       Well we’re just about out of time. But in a nutshell, what’s happening?

Caller 5 (Richard): Well, one is Neurolink – which is a process involving kinesiology.

The basic belief is that the brain can fix anything in the body if it can identify where it is. And CFS is where several fuses have blown through overload. And this particular technique and another one are able to determine where the problem is, like for instance the virus, let the brain know and they come right. So there is Neurolink, there is a new one called BodyTalk, and a woman who wrote an excellent book on ME, Jackie Steincamp.

W:       Yes, Ros would know about her.

Caller 5 (Richard): Yes, I hope I’m not betraying anything, but she is actually practising healing touch with these people and also making a considerable improvement in their lives.

W:       Some of our callers have tried all these things, you’ve tried it Kathryn?

K:         Yeah, I have tried alternative treatments. The thing with alternative treatments - they’re wonderful and they work for some people, but the same thing is not going to work for everybody, and that gets very distressing and it’s very expensive to the ME sufferer. So I’m glad that your girlfriend has found something that does work for her, that’s good news.

Caller 5 (Richard): Thank you very much.

W:       Well thanks for those points Richard. Ros, comments on that?

R:        I agree with Kathryn. Many patients try just about every alternative thing there is out there, and spend …again estimates have been done in Britain of goodness knows how many thousands of dollars per patient has been spent on trying alternative things. I think if there was a magic cure out there we would all know about it and we wouldn’t be deliberating it now. Quite honestly, the vast majority of people who try alternative things don’t actually get sustained long-term improvements. They may get a little bit of what we call placebo improvements to start with and certainly freedom from stress, because they feel they’ve got control again, and they’re actually able to do something to help themselves, can make a huge difference for some people. And I don’t deny that many alternative things are probably worthwhile, but I always tell my patients to beware of anyone who’s charging an awful lot, because someone might just be making a lot of money. And there are a lot of charlatans out there, so one should be very cautious.

W:       Fair enough. Kathryn, did you get the fuzzy vision? Because that’s part of it, isn’t it?

K:         Oh, yes…. the buzzing in the head. I couldn’t read anything for four years,  I couldn’t pick up a book to read it, because it just caused so much pain. I had a lot of muscle pain. My face would go completely numb. I was having muscle cramps in my chest, which they thought I was having a heart attack, but I wasn’t. All of these symptoms are so painful, and so distressing. And it is quite awful actually when a doctor stands there and says there is nothing wrong with you, when you know damn well that you can hardly pick yourself off the floor some days.

W:       That’s the big thing Ros. Less commonly it can occur after viral infections, vaccinations, chemical poisoning - we’ve just heard about - severe physical trauma such as accidents or operations.

R:        A lot of reasons why it can come on, that’s for sure. The one thing I would really like to stress though is that correct diagnosis is terribly important. As if we don’t keep doing all these tests, and my patients get really fed up with keep having to have tests. But we do often uncover something different in the diagnostic process, and we need constant surveillance, because new conditions can come into the picture, which may be very treatable. So I would encourage all people to make sure that they don’t just sit back and think ‘Oh well it’s all my Chronic Fatigue Syndrome,’ because they might have got something else.

W:       Well that’s the other thing, it might be a bit late in the discussion, it’s more than just tiredness we just feel from time to time.

K:         It’s an absolute painful exhaustion. It’s like nothing I’ve experienced.

W:       Just before you both go of you. There is help through the ME Societies, isn’t there?

R:        Absolutely, they are a very supportive organisation which produces a lot of literature and co-ordinates support groups nationwide, very good magazine four times a year which pulls out all the big good aspects of research that are going on around the world. And I think it’s great for people to have the opportunity to have this sort of support, when its such a lonely illness.

W:       Many thanks Dr Rosamund Vallings for your points and information today and for joining the programme, also Kathryn Harris with CFS. Better health in the near future to you Kathryn.

End of interview