Integration Advocacy: Unintended Consequences
By Craig Maupin at http://www.cfidsreport.com
I remember making a new friend a few months ago. After he asked for a little more information about me, I told him I had Chronic Fatigue Syndrome (CFS). I wasn’t surprised that he knew very little about CFS. He seemed eager to learn, and he told me he planned on doing some research on the Internet. Realizing that surfing the Internet was not the best avenue to clear up possible confusion about CFS, I offered a simple explanation of CFS and sent him on his way.
A few weeks later, I heard from my friend again. He had been reading about CFS on the Internet. Feeling this was a rare opportunity to discover what kind of impression he received from our typical advocacy efforts, I asked him what he had learned. I must admit, I wasn’t surprised when he said he was more confused than ever.
He was still not sure what CFS exactly was, or what it wasn’t. Was it myalgia, fibromyalgia, chemical sensitivities, encephalopathy, or fatigue, or a post war syndrome? He said he thought CFS must be a combination of a “bunch of controversial illnesses” -- a million differing and unrelated symptoms. He had drawn the conclusion that CFS was a myriad of complaints -- not unique or distinct in any way. The sensory overload had convinced him CFS was not a credible illness. My friend was reeling from the effects of “integration advocacy”.
What is Integration Advocacy?
It is not uncommon to see terms like CFS/FM or ME/FMS, or even longer strings -- ME/CFS/FM/MCS/GWS anyone? This advocacy approach is very familiar to those with CFS. These integrated terms, as well as lengthy explanations as to why they must be scientifically viable, have become a familiar strategy employed by CFS advocates, especially on the Internet.
Many feel that integration will create better research and treatment. Quite a few advocates have worked diligently for the integration of chronic fatigue syndrome (CFS) and FM political and research structures. As one patient says, “… we should be fighting that they be accepted as the same disease. Previous research done to prove their separateness had obvious flaws secondary to bias.”
Others advocates conclude that by associating controversial illnesses together, we increase our political power and credibility by adding numbers to our community. As one advocate writes, “[By combining illnesses into one illness] would become a force to be reckoned with. Such a block of voters could effect some real change for their benefit. One could envision respect, research, appropriate treatment, and an end of the vague feeling of helplessness.”
Advocates aren’t the only ones on the integration bandwagon. Researchers such as Wessely, Strauss, and Buchwald all have urged integration of treatment/research of various emerging illnesses. Such researchers have played key roles in the steady broadening of definitions for CFS, FM, and other disorders, as well as provided a steady of diet of philosophical postulations to support the concept.
Legitimate funding and unmet political needs, both past and present, may be playing a tremendous role in integration advocacy and research. In the early 90's, many Fibromyalgia researchers relied heavily on integration with CFS for funding and relevance. One researcher, Don Goldenberg, stated that integration was a political necessity to fund his Fibromyalgia research, “[CFS] has the potential to get more research funding. So, if the two illnesses were more or less combined, then it could be beneficial … from the point of view of funds allocated….” Today, while Fibromyalgia funding is outpacing CFS research funding, the effects of filling those formative political needs through integration may still be having an impact.
Since 1994's revised integrative definition for chronic fatigue syndrome (CFS), the CDC has vigorously defended integrating various fatiguing illnesses into CFS research samples. In the years since, integration advocacy became one of the most popular CFS advocacy patterns. Explanations of why a myriad of fatiguing illnesses should be advocated for, researched, and treated together abound. Yet, is there a cost to integration advocacy that hasn’t been fully debated? And if so, what is that cost?
One-size-fits-all treatments lead to poor treatment outcomes
Various therapies and medications have all shown distinct differences in effectiveness for patients with different illnesses. What if, for instance, CFS and Fibromyalgia patients are to receive the same treatments? Would CFS patients, who are the smaller community by ten fold, be assumed to improve with exercise? Could fibromyalgia patients also be prescribed drugs or therapies they do not need, as well as be less likely to receive specific pain treatment. The answer is "Yes." Integration can cause damage. That damage is often not discussed.
The truth is, patients will receive far more effective treatment when they are treated as individuals. Clinical distinctions between individuals, such as distinct types of pain, post-exertional fatigue or chemical sensitivity, are strong clues to differing pathologies. And even more importantly, observance of these differences can assist in better treatment.
Specific Political Needs Go Unaddressed
Year after year, integration advocacy is also allowing some pressing political needs to be left unaddressed. For instance, many of the disabling symptoms of fibromyalgia are left out by the pain-only American College of Rheumatology definition, which only emphasizes pain. For this reason, fibromyalgia is often dismissed as a mild and less disabling illness, especially if a diagnosis of CFS is not concurrent. Many fibromyalgia patients cannot get their broader symptom set affirmed without a concurrent CFS diagnosis. Yet instead of repairing the fibromyalgia definition, integration with CFS has been seen as a short-term fix.
The Primary Weakness of Integration Advocacy – Reinforcing Public Skepticism
The above problems are severe, but they are not the primary reason integration advocacy is harmful. Integration advocacy, albeit unintentional, reinforces disbelief and controversy within the public psyche. This effect was very evident in the response of my friend to his research on the Internet. Whereas many CFS advocates saw more power by adding millions of new symptoms and illnesses to their community, he simply saw more controversy and confusion. He saw an illness that was not distinct.
Having greater numbers of patients, symptoms, and political power is of limited value when the public is doubtful of credibility and authenticity. Public doubt and apathy already affect just about every area in which CFS is being inadequately addressed: from funding, to the political arena, to insurance companies, to PWC’s abandoned by families and communities. It is not just sheer numbers of symptoms or advocates that will win the battle against doubt and apathy; it is credibility. Credibility will require media savvy, reasoned thought, and strategy, and not just an emotional response. It is here that integration advocacy has come up short.
When my friend saw integration advocacy in practice, he came to a false, yet an understandable, conclusion: CFS was a soup of controversy. Going from website to website, he was inundated by numerous symptoms, a dozen or so illnesses, and a plethora of complaints. As the list of symptoms and illnesses grew longer, his views became more entrenched. When my friend saw terms like CFS/FM and CFS/ME/FM/MCS/GWS, he was not awed by more political power. He did not equate numbers of symptoms or advocates with a devastating and definable illness.
Our critics know this very well. When feminist literary critic Elaine Showalter wrote a book attacking those with CFS in the late 90’s (based upon her theory that women as a gender are more prone to conditions caused by misperceptions and hysteria as a result of the stress placed on them by patriarchal society), she grouped PWC's with two other groups that the public sees as implausible: alien abductees and Satanists. While these associations are foolish from a rational standpoint, critics of CFS see them as useful in reinforcing controversy, through association.
Showalter understood what politicians have known for years. The more controversial topics placed before the public at any given time, the more likely each topic will be further discredited. Is this always fair? Probably not. And, it is not just Showalter who seems to understand the power of association.
Suppose I wanted to convince the public that the Easter Bunny was real, before I had complete scientific evidence of his existence. Granted, this objective would be a tall (if not impossible) order. But if I joined forces with those who were urging the public to accept the Tooth Fairy and Santa Claus, I should not expect the added numbers to strengthen my credibility with the fence-sitters. The added to the collective controversy of each would inadvertently weaken any one. The same effect will hold true for illnesses that have no biomarker.
Tossing Distinctness Out the Door
Finally, integration advocacy effectively neutralizes one of chronic fatigue syndrome's (CFS) main strengths, the distinctiveness of its symptoms. The symptoms and clinical features of CFS are very unique. Slow exercise/activity recovery, extreme metabolic exhaustion, and orthostatic intolerance are not seen in any other disease like they are in CFS. Yet under integration advocacy, these distinct symptoms vanish.
I saw one example of this recently. A graphic to educate the public about CFS featured a lengthy list of tons of symptoms, both physical and psychological. The idea the viewer was intended to receive is that the number of vastly differing and unconnected symptoms CFS can produce are devastating -- "Wow! Look at that long list of symptoms. I don't want that problem. Do I?" However, lost in the presentation was any sense that CFS WAS a definable illness. And, as you look at the list of unconnected symptoms, it is difficult for those with unformed opinions of CFS to see the disease as a having a physical basis.
Similarly, my friend saw so many unrelated symptoms on his trek through the CFS advocacy world that he came to an understandable conclusion. CFS was neither unique nor definable.
Rather than winning over the skeptical public with sheer numbers and symptoms, integration advocacy reinforces the public’s view that CFS is controversial and incredible. Admittedly, this is not the intended effect. However, good intentions are not always the arbiter of efficacious outcomes. So the next time you see a term like CFS/FM/MCS/ME/GWS, ask yourself, how does an apathetic and disbelieving public see it?