Science Times podcast interview with David Tuller
Tuesday February 7th with David Corcoran of the New York Times:
http://podcasts.nytimes.com/podcasts/2012/02/07/science/07science_pod/07sci=
encepodcast.mp3
David Corcoran [DC]: For this week=92s health update we=92re joined by
reporter David Tuller, who=92s been following the tangled developments
in the search for a cause of chronic fatigue syndrome. David welcome
to the podcast.
David Tuller [DT]: Hi, thanks David.
DC: So, what exactly is chronic fatigue syndrome?
DT: Well chronic fatigue syndrome is really complicated, is probably
an immunological and neurological disorder.
It seems to be probably triggered by an infectious illness of some
kind, or multiple infectious illness, which seems to illicit a kind of
immune response that is sort of hyperactive and goes on and on and
doesn=92t shut itself off =96 which is probably what causes all the
symptoms.
DC: It=92s quite common isn=92t it?
DT: Well it=92s hard to tell how common it is because it=92s a little bit
hard to define =96 since it can look like a lot of other things. But the
average estimate that people talk about is about 1 million people in
the US. And some of those are really, really severely sick.
Really disabled, can=92t leave the house, may be not able to tolerate
light, heat and so on and so forth.
DC: For many years there was just no such diagnosis as Chronic Fatigue
Syndrome. When was it officially recognised by doctors?
DT: Well I can=92t even say that it=92s officially recognised by doctors
at this point because many still think of it as a psychological or
psycho-somatic kind of illness, but in the US there was an outbreak =96
series of outbreaks =96 of what appeared to be associated with
Ebstein-barr virus =96 which causes mononucleosis =96 and, so, those were
the first investigations of what the CDC then calls Chronic Fatigue
Syndrome.
There had been earlier outbreaks, similar outbreaks, of a lingering or
long flu-like illness from which people did not recover, in the
Thirties; in the Fifties there was a big outbreak like that in London.
So there had been prior episodes the CDC just gave it a different name
=96 Chronic Fatigue Syndrome =96 than other people had called it earlier.
DC: So, now we have the official diagnosis of Chronic Fatigue
Syndrome; why is it so controversial?
DT: It=92s really controversial because in all the years of research
it=92s been very hard to come up with a biological marker. When [?] most
diseases, [e.g.] HIV or Tuberculosis, you can do a lab test and you
can identify, =91Yes=92 this person has it or this person doesn=92t.
Something that=92s a syndrome =96 as in CFS =96 is a collection of symptoms
and so it=92s defined by the symptoms and if you don=92t get the
definition exact =96 if it=92s hard to describe in some ways =96 and doctor=
s
aren=92t sure how to identify it (and researchers also) =96 then it=92s ver=
y
very hard to get consistent findings across studies; because everyone
is using a somewhat different definition of the illness.
DC: And I guess it=92s possible that there could be multiple illnesses
involved and therefore different causes, right?
DT: Yeah, I think basically what seems to be the emerging perspective
is that it=92s a cluster of illnesses. So different people are going to
have different pathways to the same kind of syndrome or to the same
kind of hyperactive immune response that they=92re getting.
So for some it might be one or more infectious triggers, it might be
an episode of mononucleosis, it could be exposure to some
environmental toxins; they don=92t really know and I think there=92s a lot
of intensive research now trying to look at sub-categories of
patients.
Because again, when you have a lot of patients coming to it [the same
diagnosis] from a different cause it again is very hard to isolate one
particular [common] cause. So I think that=92s been a problem as well
with the epidemiology.
DC: So, as you report in your article there was quite a lot of
excitement back in 2009 when a study in the Journal =91Science=92
identified a possible cause for Chronic Fatigue Syndrome. Can you talk
about that study and what the findings were?
DT: That was a really high profile study, because =91Science=92 is the
most prestigious, or among the most prestigious, Journals.
This was study that found that about two thirds of a sample of people
with Chronic Fatigue Syndrome were harbouring a retrovirus =96 a mouse
leukemia retrovirus =96 and 4% of the control population.
And so for people with Chronic Fatigue Syndrome who have long been
used to having their illness mocked or ignored or treated like
something faked, this was really, just a wonderful thing to read about
this and to hear about this: that someone had pinpointed something
that maybe could be a causal factor.
DC: And, who=92s the researcher who led this study?
DT: It was an interesting development, because often these studies
would come out of well-known government agencies, or well-known
academic centres, and this was a study that came out of a small
research centre =96 the Whittemore Peterson Institute in Nevada which
was founded by a wealthy couple =96 whose daughter was sick with Chronic
Fatigue Syndrome.
The researcher on the article was a former researcher at the National
Cancer Institute named Judy Mikovits. And so once the study was
published =96 really it=92s hard to overstate the degree to which the
patient population has felt ignored and subsequently the degree to
which they adopted Dr Mikovits=92 as really a patron saint in a way,
because she was really taking their illness seriously.
DC: And then what happened?
DT: Well, I mean over the last couple of years it=92s been a real
rollercoaster. Most other studies were not able to sustain the
findings =96 they couldn=92t find what she had found. One other study
found something comparable which was viewed as supportive of her
findings, and that was a high profile study also. But both of those
studies were retracted about a month and a half ago by the respective
Journals, and so the scientific base for what they reported is no
longer in existence at this point.
Even so there is a study supported by the National Institutes of
Health =96 that=92s a very high profile and large study =96 that=92s
continuing to look at the issue as to whether these mouse leukemia
viruses are related to Chronic Fatigue Syndrome. That study, which
should have results coming up pretty soon, will be looked at I think
as kind of the definitive look at this particular question.
DC: So it sounds like quite a tangle, but as you say we=92re not exactly
back at square one even with the retraction of these studies, there=92s
another effort underway to find causes for Chronic Fatigue Syndrome
and apparently [the possibility of???] some promising results ?
DT: Yeah, I mean it=92s been a very interesting phenomenon because I
think while a lot of this was going on I think the patient community
was feeling =91It=92s this retrovirus or it=92s nothing=92.
You know, and they were really worried if it turned out not to be this
retrovirus it would be the end of any attention for their illness; but
in fact what seems to have happened is that through this whole debate
a lot of researchers who were not necessarily interested in the
illness before =96 or who may have dismissed it themselves =96 started
looking at some of the epidemiology and some of the scientific studies
about what these people have going wrong with their bodies and came to
realise that, yeah, this may be a serious thing.
And at the same time I think some private philanthropies =96 who may
have family members who have the illness or friends =96 have come to see
that the government funding has really been woefully lacking and have
stepped up to the plate to try to fund some real effort. So there
really are some heavy hitters now involved and apparently committed to
looking for causes and treatments, and hopefully that will continue.
DC: And meanwhile what are the prospects for people with Chronic
Fatigue Syndrome =96 are there any treatments now that are effective?
DT: It=92s been really difficult [to find treatments?], there are still
some people who believe in retrovirus theory and are trying
anti-retrovirals. There have been some small studies with anti-virals
because a lot of people really do think that, not necessarily a
retrovirus, but some kind of viral infections are causing it. So
there=92ve been small studies of people on anti-virals for extended
periods of time =96 which have shown some results. There was a small
study in 2010 that showed some promising results. But there=92s not
really anything hard and proven that people can get.
I think often that doctors who are expert in treating this, look to
provide symptomatic relief, rather than necessarily feeling that they
can treat the underlying cause because they don=92t necessarily know
what the underlying cause is.
There are doctors that have had sporadic and anecdotal success with
some patients and I think part of the ongoing effort now is to not
only identify the pathogens at play but also, obviously, to identify
some kinds of treatments that can be used to fight them.
DC: So, to be continued=85 David Tuller, many thanks for following this
story for us.
DT: Ok, thanks David.
DC: David Tuller is a medical reporter, writes for the New York Times.
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