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Does Chronic Fatigue Syndrome run in the family?




Research presented at the 8th IACFS Conference in January suggests children whose mothers suffer from chronic fatigue syndrome are more likely to develop the condition.

The International Association for Chronic Fatigue Syndrome (IACFS) is a non-profit organization of research scientists, physicians, other healthcare professionals, and interested individuals and institutions. Their aim is to evaluate the latest research and treatment options for chronic fatigue syndrome (CFS) and fibromyalgia, and to encourage further research into these conditions.

Since 1992 the IACFS has been holding conferences that bring together researchers, doctors, government officials and other organizations to focus international attention on CFS and its public health impact and to stimulate public and private research funding. These conferences are attended by the foremost experts on CFS and fibromyalgia and are seen as the place where all the latest knowledge about the conditions comes together.

The 8th IACFS conference was held in Fort Lauderdale, Florida, last month and was much more patient orientated than previous conferences. Individual patients and advocates from international CFS and fibromyalgia advocacy organizations met for the first time to share their ideas in workshops on fundraising fundamentals, empowerment, and media training. The conference also presented a unique opportunity for patients to meet and talk with leading international doctors and researchers.

The conference focused on the theme of interdisciplinary research and integrative care, and as always, top doctors and researchers from around the world presented clinical and research findings on many different aspects of CFS and fibromyalgia. Amongst the subjects covered in the presentations were brain dysfunction, genetic markers, mold and environmental illness, Lyme disease, and the role of the HHV-6 virus in CFS and fibromyalgia (for detailed coverage of the information presented at the conference, in layman's terms, I highly recommend visiting Cort Johnson's website. Link at bottom of page.)

What I'd like to focus on here however is the question of whether chronic fatigue syndrome runs in families, implying an inherited aspect to the illness. The results of two separate research studies were presented at the conference that shed some light on this issue.

This aspect of CFS holds particular interest for me as along with myself, both my mother and sister also suffer from it. I developed CFS in 1990, aged 11, and my mother also became ill at the same time whilst she was in her late 30's. Around 7 years later my younger sister also developed CFS whilst she was in her mid-teens. My sister and I are the only children in the family and we are both affected.

Naturally, we have always wondered how much of this was down to inheritance, without ever really looking into it in any detail. Many doctors over the years have told us it is just a coincidence, but you have to ask whether they actually had any knowledge on the subject. Most doctors in the past have typically had very little understanding of the illness at all, although thankfully this is starting to change, slowly.

It has always seemed to my family and I that a mother and both of her children all suffering from CFS was just too much to be coincidence and that there must be some inherited aspect to it, most likely a genetic susceptibility. The two research studies discussed at the 8th IACFS conference address precisely this issue, and validate my family's long held thoughts.

The first study was entitled 'Too Close for Comfort - Mothers with CFS and their Children' and was carried out by Rosemary Underhill and Ruth O’Gorman. The aim of the study was to determine how often CFS shows up in the children of mothers with CFS. Of the mothers suffering from CFS that took part in the study it was found that a high rate of 5.5% of their children suffered from CFS and 11.5% suffered from 'chronic fatigue', i.e. a similar but less serious condition that doesn't meet the diagnostic criteria for CFS. What's more, a remarkable 24% of mothers had at least one child suffering from CFS or chronic fatigue.

Dr. Underhill commented on the results saying that the numbers were likely on the low side as some children will develop CFS as they age. In addition, the study also found that most of the children with CFS were born before their mothers became ill with it, a scenario true for my family. Finally, and rather tellingly, none of the adopted or step children suffered from the illness. These findings seem to be strongly suggestive of a genetic component, and possibly a common infectious or environmental trigger.

Encouragingly, the researchers also learned that recovery rates among the children were fairly high with half of those with CFS recovering over time.

Results from a second study whose results were presented at the conference would seem to confirm those of the first. This study, entitled 'A Chip off the Old Block? Heredity and CFS', was conducted by researchers led by Frederick Albright. The researchers did statistical analysis on the genealogical records of 600 people with CFS in Utah, USA, an area that meticulously records genealogical data. It was hypothesized that the CFS patients would be more related to each other than expected, and this is exactly what the analysis found. Further evidence therefore of genetic link.

The researchers went on to look at the CFS patients' closest relatives with the aim of looking at whether there were increased rates of CFS, and pain and fatigue related conditions, in these people. Again, they found that relatives of CFS patients had significantly higher than normal rates of migraine, irritable bowel syndrome, Granada’s disease, temporal mandibular disorder, osteoarthritis and myalgia. Rates of myalgia (muscle pain) were much higher than normal even in distant relatives. These results clearly suggest that a genetic susceptibility may be at the root of all of these diseases and that they are at least distantly related to CFS.

Albright and colleagues concluded that genetics plays a significant role in CFS.

So here we have two research studies whose results are strongly suggestive of a familial susceptibility to CFS. These studies didn't just find a slight increase, the figures were remarkably high. With a few more quality studies replicating these results it's almost certain that the idea of CFS running in families will be taken as a given in the near future.

What's most interesting for me is the first study that looked specifically at the risk of the children of a mother with CFS developing the condition. It has long been suggested that the mitochondrial dysfunction seen in CFS could in part be due to genetics. The mitochondria are the 'power stations' of the cell, producing energy from food and oxygen. What's interesting is that unlike the genetic material in the nucleus of every cell, which is made up of half from the mother and half from the father, the mitochondrial genetic material comes entirely from the mother. This makes a child very vulnerable to any mitochondrial dysfunction that the mother is affected with. This latest research would appear to confirm the theory.

What I'd like to see is similar research carried out that looks at men with CFS and the risk of their children being affected by it. My family is an example of children being at high risk for developing CFS if their mother is a sufferer. I have heard many reports of similar cases but none that I can recall of families where the children of a father with CFS have also developed it. Research along these lines would nail down once and for all the maternal link and narrow the focus for future research into the causes and possible treatments for CFS.

Finally, although most commentators will see these study results in terms only of a genetic link, I think it is worth mentioning another possibility. DNA is not the only thing that children inherit from their mothers, they also inherit the micro-organisms that will make up their gut flora. The composition of a child's gut flora is also strongly dependant on the ability of their mother's milk to stimulate the growth of beneficial organisms. Although research on the role of the gut flora in health is still in its infancy, the amount of research carried out on the subject over the past decade or two is enormous. This research has shown that a healthy gut flora is of vital importance to the future health of a child. An unhealthy balance of bacteria and other organisms has been shown to increase the risk of allergies and asthma for example. Research has also found high levels of unhealthy micro-organisms in the intestines of people with CFS, fibromyalgia, and irritable bowel syndrome.

If a mother has an unhealthy gut flora, not only will she be vulnerable to disease, but her children will inherit this unhealthy gut flora and be susceptible to the same conditions themselves. Of course, this is speculation at this stage but the hints are there in the research that has already been done. It's certain that in the future, the health of a person's (especially a child's) gut flora will be seen as being of vital importance to their overall health and risk of developing certain diseases.

» visit the IACFS website

» read Cort Johnson's excellent coverage of the 8th IACFS conference


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