ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Radio show podcast: CFS infection and research
Wednesday 22 February 2012
CFS Infection and Research
Today we’re asking — Are infections common in CFS (Chronic Fatigue Syndrome)? The answer surely is a “Yes!” But is there a CFS infection going on? And then we’ll look at some current CFS research. What causes this illness?
Some people get sick immediately after an infectious trigger event, or, at least, after a series of different ones. It’s common. If illness symptoms hit you all at once, a specialist/ doctor may class you in the sudden onset category. If you’ve been so sick for a long time and you’re gradually getting worse, then you may be classed as having gradual onset of the illness. Sudden, vicious infections can be a problem for a relatively healthy person. However, when you’re faced with a diagnosis of CFS, the issues of being sick and getting well just got a whole lot tougher to deal with.
Infections, whether bacterial, viral or parasitical, are topics addressed in medical literature and studied in laboratories the world over. But, not one of piece of research has ever been clearly identified as a cause or infectious trigger of CFS. Not one.
After you listen to my Health Matters Show podcast (below) on this topic of CFS Infection and Research, consider what you need to do to bolster your immune system and make it stronger. Next, take a look at the transcript of one health reporter, David Corcoran, as he interviews David Tuller about his recent article for The New York Times. (Thanks to ME/CFS Forums' contributor "Firestormm" for making this transcript available.) He also discusses a new NIH research project initiative.
David Corcoran [DC]: For this week's health update we're joined by reporter David Tuller, who's 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't shut itself off which is probably what causes all the symptoms.
DC: It's quite common isn't it?
DT: Well it's hard to tell how common it is because it's a little bit hard to define 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't 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't even say that it's 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 series of outbreaks of what appeared to be associated with Epstein-Barr virus which causes mononucleosis 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 Chronic Fatigue Syndrome 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's really controversial because in all the years of research it's 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, 'Yes' this person has it or this person doesn't. Something that's a syndrome as in CFS is a collection of symptoms and so it's defined by the symptoms and if you don't get the definition exact if it's hard to describe in some ways and doctors aren't sure how to identify it (and researchers also) then it's very very hard to get consistent findings across studies; because everyone is using a somewhat different definition of the illness.
DC: And I guess it's 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's 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're 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't really know and I think there's 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's 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 'Science' 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 'Science' 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 a mouse leukemia retrovirus 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's 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 the Whittemore Peterson Institute in Nevada which was founded by a wealthy couple 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 really it's hard to overstate the degree to which the patient population has felt ignored and subsequently the degree to which they adopted Dr Mikovits' 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's been a real rollercoaster. Most other studies were not able to sustain the findings they couldn't 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 that's a very high profile and large study that's 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're not exactly back at square one even with the retraction of these studies, there's another effort underway to find causes for Chronic Fatigue Syndrome and apparently [the possibility of???] some promising results ?
DT: Yeah, I mean it's been a very interesting phenomenon because I think while a lot of this was going on I think the patient community was feeling 'It's this retrovirus or it's nothing'. 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 or who may have dismissed it themselves 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 who may have family members who have the illness or friends 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 are there any treatments now that are effective?
DT: It's 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've been small studies of people on anti-virals for extended periods of time which have shown some results. There was a small study in 2010 that showed some promising results. But there's 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't 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 David Tuller, many thanks for following this story for us.
DT: Ok, thanks David.
DC: David Tuller is a medical reporter, who writes for The New York Times.
The above originally appeared here.
blog comments powered by Disqus