![]() ![]() ![]() ![]() ![]() ![]() ![]() ![]() ![]()
|
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. Download
MS Word version of transcript below
(67kb) Interviewer:
Wayne Mowat 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. 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. 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. 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. 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. K: Thank you for having us.End
of interview |