Chronic Fatigue Syndrome (CFS) has long been a neglected illness, with patients often feeling completely sidelined from society with no hope for the future. The CDC is hoping to change this with a campaign to boost recognition of the illness and new research studies announced.
For those of us who have lived with chronic fatigue syndrome for many years, the announcement that the U.S. Centers for Disease Control and Prevention has launched a $4.5 million campaign to educate physicians and the public about the illness is welcome news, if long overdue.
Despite CFS having been an officially accepted diagnosis for many years now, there is still a lingering stigma associated with it. For many years sufferers were considered to be whining hypochondriacs who couldn't handle a hard days work like the rest of the population. Unflattering and entirely inaccurate labels such as "yuppie flu" were often uttered when the subject of CFS came up.
I was a highly active and happy 11 year old when I was diagnosed with CFS. I loved sports and was active in many school teams, I also loved being in the classroom at school and enjoyed learning from both factual and fictional books at home. My home life was great and I had many friends. What reason I could possibly have had for pretending to be sick, as a number of psychiatrists I was sent to suggested, I do not know. And I was a far cry from the malingering and attention seeking middle aged yuppie that many would have had us believe was the typical CFS sufferer.
CFS can in fact affect people of any age, gender, race and socioeconomic group, although research suggests women are 4 times as likely to be affected than men.
Dr. William Reeves, chief of the chronic viral diseases branch at the federal Centers for Disease Control and Prevention is quoted as saying "This isn't hooey". He goes on to state "This illness ... was thought to be a bunch of upper-class, yuppie, white women who were whiners. But there is a substantial body of solid, scientific literature accumulating."
It's great for us CFS patients to finally be getting recognition from the mainstream medical community, after years of ignorance from doctors and the general public. Not only have CFS patients had to deal with the disabling symptoms of fatigue, muscular aches and pains, cognitive difficulties often termed "brain fog", unrefreshing sleep, and a host of other serious symptoms, we have also had to deal with being treated as if we're not really sick by virtually everybody, including the medical professionals who are supposed to be caring for us.
Things appear to be changing with high ranking medical officials now acknowledging the seriousness of the illness. Julie Gerberding, director of the CDC says "The most important thing to understand is that the fatigue component creates a significant disability,'' whilst Dr. Reeves states "Someone who has CFS is as disabled as someone with muscular sclerosis, someone with AIDS or end-stage renal disease". "The others will die from their diseases, but those with CFS are no less disabled."
Experts have estimated that chronic fatigue syndrome affects about 1 million Americans, of whom 80 percent have not been diagnosed. This is very worrying considering that early detection is considered to be important for a quick recovery. Let's hope that this new initiative from the CDC will help improve awareness amongst doctors, and thus diagnosis. Perhaps CFS will also come to be accepted for the serious disabling illness it is by the population at large, so that sufferers can concentrate on getting well rather than having to constantly explain themselves.
In another recent announcement the National Institutes of Health said that millions in extra funds were being allocated to CFS research with a number of important studies set to be undertaken. Seven researchers studying the relationship between CFS and the immune and neurological systems were awarded grants.
There is currently no definitive diagnostic test for CFS. "There is no gold standard test,'' says CDC Director Julie Gerberding, so doctors first have to rule out other illnesses and go by symptoms alone.
The new research funds will hopefully lead to the discovery of biomarkers that can be used to diagnose the illness. Having said that, there is more than a suspicion that CFS is actually a group of illnesses that present with very similar symptoms but are subtly different from each other in terms of causes and the biochemical changes involved. Perhaps then, research will lead to a battery of tests that will be able to determine if a patient has CFS but also which subset of the disease specifically.
The new research is also aimed at discovering what causes CFS as well as looking for potential treatments. So far we CFS patients have had to do our own research and treatment trials for ourselves, seeing numerous doctors and therapists and becoming experts on the illness ourselves through reading books and webpages. Many have had great successes using their own newly acquired knowledge and using a combination of conventional treatments, nutritional & herbal supplements, alternative therapies and various other methods. The new research may help determine which of these therapies are actually effective and perhaps develop entirely new specific treatments.
All of this is certainly welcome news for those of us who have had to live with the condition for so long without being taken seriously. Let us hope this effort provides measurable results.
As an end note I would like to thank all those doctors who broke from the pack and took CFS and patients seriously long before official recognition came. These doctors include Dr. Jacob Teitelbaum, Dr. Paul Cheney, and Dr. Sarah Myhill, although there are many more. Not only did these people take us patients seriously but they also took considerable personal risk in many cases to develop and provide us with the information and treatments we desperately needed. Thank you.