THE CDC/CFSAC BLOGS #1
Dr. Ken Friedman, board member of the IACFS/ME, just reported the first documented case of a person coming down with chronic fatigue syndrome (ME/CFS) as a result of getting the swine flu virus. This is what he said:
Regrettably I must inform you that the first case of post-swine flu CFS has been reported to the IACFS/ME (the International Association for Chronic Fatigue Syndrome/ME).
The patient is a 15-year old male New Zealander who contracted H1N1 on a trip to Mexico and never recovered.
A Hard Hit Group Swine flu is often innocuous but when it does cause trouble appears to hit young people harder than older people – presumably because young people haven’t been exposed to anything like it in their lifetimes. Most of the deaths in the San Diego area have been in young people. Will swine flu create a lot more young ME/CFS patients? Will a significant number of young people find their lives turned upside down – perhaps for the rest of their lives – over the next six months?
Of course we don’t know. Unfortunately we may never know – expect anecdotally – because the agency that should be watching out for this, the Centers for Disease Control, is, once again, asleep at the wheel.
We don’t really know if some pathogens are ‘better’ at causing chronic fatigue syndrome than others. At least one study suggested that upper respiratory viruses do not cause ME/CFS. The Dubbo studies, on the other hand, showed that a wide the range of pathogens can trigger this disorder and that people who had a more severe initial infection were much more likely to come down with ME/CFS. Since the H1N1 (Swine flu) virus appears to be hitting young people harder than the rest the population it doesn’t take much to figure out that that group could experience increased rates of ME/CFS in the near future – and perhaps for the next several years (if the virus returns for several years).
Dr. Friedman then asked the next obvious question: given that ME/CFS is a serious disorder (the head of the CDC herself told us that) and the incidence of it in young people could very well rise sharply in the near future, one must ask what our agency in charge of commanding and controlling infectious diseases, the Centers for Disease Control, is doing to ward off this threat?
The report raises the obvious issue of an increase in the number of adolescents in the United States who contract CFS subsequent to an H1N1 infection. What measures can be taken and what resources can the CDC and the National Institutes of Health put into place to minimize the occurrence of post-swine flu CFS? What measures can be taken and what resources can the CDC and the National Institutes of Health put into place to promptly diagnose and treat adolescent post-swine flu CFS should it occur?
Opportunity Knocks – Some good questions. One is struck first of all by how easy it would be to monitor the incidence of ME/CFS after swine flu since the CDC and state and local organizations are already monitoring swine flu patients. The CDC has spent an enormous amount of money on random sampling simply finding the ‘right patients’ for their studies. One would think they would be rejoicing at this opportunity; the virus, after all, which is everywhere, has already done their random sampling for them. No need for million dollar projects just to find the patients further studies. Their study population is already in their computers!
The CDC has funded two expensive studies to determine if childhood sex abuse sets the stage for this disorder. Next they’ll will be examining the records for the community to determine if other childhood events can somehow start the process that ends up years later in this disease. We will eventually know what percentage of people who experienced X event 30 years ago ended up with ME/CFS.
But what about the people that are about to have their lives turned around right now? What about those teenagers who may be about to embark on what could be a lifetime of suffering? Right now they’re going about their normal everyday lives. Over the next six months or a year or two years some of them are probably going to enter into an abyss – the depth of which will astonish them. Their parents will fruitlessly go from doctor to doctor looking for answers. What is our command and control agency doing about them?
Opportunity Lost – It appears that they’re going to do nothing. One shouldn’t be surprised. They appear to be good at ignoring opportunities. Hurricane Katrina provided an opportunity right in their backyard to determine how important a role stressful events play in triggering this disorder – a key factor in their conception of ME/CFS. The CDC ignored them as well. While they’re were ignoring what some thought was the opportunity of a lifetime Dr. Reeves and Emory University were spending millions of dollars simply to find a small number of patients that they felt were acceptable to use in their studies.
Now hundreds of thousands if not millions of young people will be exposed to a type of virus their bodies have never encountered before. Some of their immune systems will go on overdrive trying to fight it off. Some of them will die and if the past infectious studies are accurate about 10% of them will come down with a prolonged case of post-viral illness. Some smaller percentage of them will come down with a chronic possibly lifelong disorder with few treatment options. Will the CDC be following them?
Sitting on the Sidelines (Again) – No it won’t. It’s a measure of the paltry effort CDC has put out over the years that one can hardly imagine that they would do so. The fact that the CDC’s CFS research team will be sitting on the sidelines during what will most likely be the most significant single infectious event to happen to the population of North America in our lifetime won’t surprise anyone with this disease. In a disease which has been shown again and again to be triggered by infection it’s unconscionable that they are letting this opportunity pass by – but its not surprising.
This goes far beyond patients disillusionment with Dr. Reeves. This an indictment of the entire organization. It’s about an organization that doesn’t fund their CFS program, doesn’t monitor and doesn’t appear to listen to complaints about it; it’s about an organization that is trying to get away doing as little as possible about this disorder. A nationwide outbreak of chronic fatigue syndrome could be about to strike the youngest and most vulnerable amongst us and they couldn’t care less.
The IACFS/ME Picks Up the Ball – Dr. Friedman reported that the IACFS/ME is going to take some action. During a board meeting
It was agreed that a case study would be written and submitted for publication in a refereed journal. By doing so, greater credibility to the occurrence of post-H1N1 CFS will be given.
The IACFS/ME will make every effort to alert the medical community to the potential increase in the incidence of CFS, particularly in the adolescent population, both nationally and internationally.
Fighting Back – The CDC has failed us again and again and they are failing us again. This time, though, there is something we can do about it. At the end of October at the CFSAC meeting in Washington DC CDC will unveil their CFS teams strategic plan. A major figure from the CDC will be there and hopefully you will be there to in one form or another. We won’t have another venue like this to make our views known for another 10 years.
Something is happening in the patient and research community regarding the CDC that hasn’t happened before. More on that in a series of blogs on the CDC as we move to that all important date in late October in Washington, DC.