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Clever Rationalizations – The Defense of the Shaky Foundation

By Craig Maupin at http://cfidsreport.com

Preface

In my grade school days, I felt I was too smart to do my homework upon arriving home. I would run out and play, putting off my assignments as the evening hours wore on. Then in the morning, I found myself in a quandary.

Despite the desperate situation, I figured I could always make up for lost time on the bus. Other kids would chat, laugh, compare lunch items, and do the typical things kids do on a school bus. Not I. I would huddle in the back seat as we hurtled over potholes and bumps, desperately trying to finish my homework. For most of my classes, this system worked out fine. I still got A’s. However, one class was an exception, and that exception was my math teacher, Ms. Wade.

Ms. Wade collected homework every day. And frequently, I would rise from my seat, and plop on her desk one of the most haphazard, sloppy examples of homework she had ever seen. It was crumpled, written as if on a thrill ride (if you knew my bus driver, Mr. Barbour, you would understand), and chaotically crammed in my pocket at the last moment. I always hoped Ms. Wade wouldn’t notice the mess, but she always did.

This was the part of my day that called for “The Rationalization”. It was time for my clever explanation as to why my homework looked like Godzilla wrote it instead of a boy. Ms. Wade always demanded “The Rationalization”. I used to think she did it to torture me, but now I really think she did it for her own amusement. Or, I thought that perhaps she did it to make me squirm before she marked points off my grade.

Looking back, I had some amazingly clever and humorous explanations. I told her “Genius’s did their work that way”, or “Albert Einstein was sloppy, right Ms. Wade?” I told her, cramming the homework in my pocket was all about “organizational skills” and “Details cramp my style”. By the time I finished her class, Ms. Wade had heard a lot of creative explanations justifying why homework should be uninterpretable, sloppy, and impossible for her to grade.

At the time, I didn’t really understand Ms. Wade. I assumed that she just didn’t know about important “guy” things like playing in the creek in the afternoon, riding bikes, or fishing. But now, I have come to understand her side of the story. She knew how to promptly spot a clever rationalization. I am sure that, despite her unyielding countenance and unwavering commitment to quality homework, she actually once in a while said to herself, “That was a good one, Craig.”

Chronic fatigue syndrome (CFS) researchers also know how to tell some “good ones”. But unfortunately, we don’t have Ms. Wade to clean up the mess. In a bitter twist of irony, one of the sloppiest students to enter Ms. Wade’s classroom is going to be stepping into her role of “rationalization hearer” today. The creative explanations that the CFS research community present for the “integrative approach” of CFS research are rarely challenged. This problem, and this problem alone, is the reason for part four of the Shaky Foundation Series ---Rationalizing the Shaky Foundation.

Clinging to the Sinking Ship

Today there is widespread agreement that the CDC’s 1994 revised definition is poorly conceived, leads to conflicting results, and contributes to low standards. While this admission is a positive first step to placing chronic fatigue syndrome research on a sound foundation, it will not be enough to guarantee better results in the future. If the CFS research community is again to earn respect, CFS researchers will have to rethink some of the poorly formulated ideas that they frequently espouse.

The 1994 CDC case definition was not a mistake that occurred in a philosophical vacuum. There were widely held beliefs in the CFS research community that led to its adoption. We will not see a more reliable case definition for CFS until the widespread faith in many of these accepted beliefs is challenged.

Many of these accepted ideas may be trendy and familiar due to constant reiteration. Even so, they are far from logical. Time and time again, key players in the CFS research community repeat them as if they were scientific law. It is these ideologies that are providing fuel for the conflicting results and the lack of respect for CFS research. These dogmas are widely accepted and advocated by many of the CFS researchers who receive public funding.

These ideologies may be reiterated less from conviction than from political convenience. Despite often being touted by the CFS research community as appropriate scientific rationale to mix very different research samples, there is little to suggest they are solid. The conflicting results seen in CFS research, along with a failure of the supporting rationalizations to align with real-world examples, convince me that they need a second look.

Fund Me! - How Political Needs Are Driving CFS Research

Since the adoption of the controversial name ‘Chronic Fatigue Syndrome’ to describe several outbreaks of flu-like illness in the late 80’s, the CFS research community has slowly broadened its scope. Much of that broadening may be based on political and funding needs that are going unaddressed elsewhere, rather than a legitimate desire to find the answers to CFS.

For instance, many psychiatrists want psychiatric illnesses to be taken seriously. They want their profession to be as respected as other medical fields. This aspiration may have been a propelling force behind the inclusion of stress disorders and psychiatric illnesses in CFS research samples.

Sufferers of illnesses such as Fibromyalgia assert that their case definition (defined by the American College of Rheumatology as 11 pain-sensitive pressure points) is too narrow to describe the disabling range of the symptoms of Fibromyalgia (such as fatigue and sleep dysfunction). This has created a situation where many assume Fibromyalgia is not disabling without a concurrent chronic fatigue syndrome (CFS) diagnosis. Instead of repairing the Fibromyalgia definition to include FM’s full range of symptoms, these patients, as well as the doctors that research them, have found a temporary solution under the broad, nondistinct case definition of CFS.

Either way, these researchers and patients are likely supporters of keeping the CFS case definition broad and non-distinct. It is clear, there may be some unmet political and physical needs underpinning the current state of affairs in CFS research. These needs are real and deserve attention, but one could easily make the case that creating looser CFS research standards is not a justifiable way to fulfill them..

Entrenching the Shaky Foundation, Rather than Confronting It

When chronic fatigue syndrome (CFS) researchers come to the table again to work on a new case definition, the politics that led to the formation of the revised case definition will be even more ingrained than they were in 1994. Terms such as “symptom overlap”, “co-morbidity”, the ever-popular “heterogeneity”, along with the assertion that mixing fatiguing illnesses will “clarify” CFS’ pathological nature, could all be repeated. These rationalizations of the current state of low standards in CFS research have become more practiced and refined than ever. In the end, the flimsy ideological base that led to the crafting of the 1994 CDC CFS case definition will have to be challenged. These rationalizations are full of some rather amusing assertions, new scientific “laws”, and creative modeling. Let’s take a look.

Rationalization 1: Symptom Overlap is Overwhelming Evidence that Emerging Illnesses have the Same Pathology

Just about all illnesses have some form of symptom overlap, especially when you define symptoms such as “fatigue” and “pain” with very general terms. Chronic fatigue syndrome (CFS) researchers often have a tendency to define symptoms generally, so much so that almost any fatiguing or emerging illness would have symptom overlap. What is often not admitted is that symptom overlap can be a PRODUCT of low standards and poor use of distinctions, rather than a reason to continue them. Even so, “symptom overlap” is rationalization #1 when it comes to the low standards seen in CFS research.

To hear some CFS researchers, you would think that they had discovered a new scientific law. “Symptom overlap”, under the broad CFS case definition, is repeated again and again as suitable justification to mix research samples, as well as proof of the “sameness” of those currently receiving a chronic fatigue syndrome (CFS) diagnosis. The most prominent reasons cited for not subgrouping patients was that since many groups share the general symptoms of pain and fatigue, they should be researched and treated as one general “fatigue syndrome” based on “symptom overlap”.

The following is an argument that is commonly repeated by CFS researchers who draw public funding for Fibromyalgia:

“CFS is likely a spectrum of illnesses sharing a common pathogenesis with varying degrees of fatigue and associated symptoms. Other disorders, such as fibromyalgia, have overlapping symptoms with CFS, suggesting that both diseases may share common physiologic abnormalities."

But other researchers have pointed out that this assumption is supported by a belief that the broad, politically derived case definition has been effective in producing clear results, which it has not. And secondly, this assertion uses circular logic. Nancy Klimas, an immunologist at the University of Miami, describes the danger this assumption creates: “…the case definition itself contributes to the heterogeneity of the patient population, creating a shaky foundation for CFS research.”

Symptom overlap is a poor argument for continuing the “integrative” approach to CFS research. The integrative definition for chronic fatigue syndrome has not lead to consistent results or findings. Instead of true clarification, conflicting outcomes, different responses to treatment, and incompatible models for CFS have been the rule.

But the problems with this idea go even farther. They clash with many real world examples. Let’s suppose CFS researchers touting ‘symptom overlap’ offered to assist the endocrinology community with their classification of endocrinological diseases? For instance, diabetes mellitus and diabetes insipidus both share thirst and fatigue; therefore, the CFS research community could say that this must mean they are “sharing a common pathogenesis”. Fortunately, endocrinologists would point out that one group’s symptoms worsen after the consumption of food. Because the endocrinologists don’t ignore this vital distinction, we now know one illness is an illness requiring treatment with insulin, while the other requires the use of vasopressin. If endocrinologists routinely ignored this distinction, they could cause much suffering (and even death), despite the best of motives!

Examples like this illustrate the very reason why clinical distinctions are both important and relevant to dependable scientific inquiry. It also illustrates why “symptom overlap” should not be considered a reasonable rationale for formulating clinical and research guidelines. The widespread proselytization of “symptom overlap” as a justification to mix distinctly different research samples may be politically motivated, rather than scientifically pure.

Rationalization 2: Mixing differing fatiguing conditions into CFS research samples leads to clarification of its pathology and treatment…

This rationalization would have truly amused Ms. Wade, but I doubt it would have baffled her. CFS researchers have frequently stated that integrating Fibromyalgia patients into CFS research samples will yield much clearer research results, as well as save time and money. For instance, researchers such as Mohammed Yunus and Simon Wessely have both confidently stated that the distinct classification of emerging illnesses like CFS and Fibromyalgia can be extremely counterproductive, drain financial resources, and require too much effort. Wessely, for instance, says that by treating these illnesses the same a researcher “avoids unnecessary investigation.” Yunus has stated confidently, “ If a satisfactory treatment is found in one, it is likely that treatment will work in others as well.”

So, are they right? Have both of these researchers stumbled onto a novel and innovative approach to medical research? Are classifications for emerging illnesses counterproductive? Many CFS researchers are concurring with and even defending these ideas. And, even many CFS patients have taken them up as an advocacy strategy.

There is plenty of evidence to suggest this approach to research is fraught with dangers and poor outcomes. What are the costs if Wessely and Yunus are wrong? Poor treatments, conflicting results, and confusion would certainly result. While conversely, the costs of classifying patients are minimal. Even if this approach is later proven to have been unnecessary, it won’t have led to confusion, poor treatments, and a slowing of progress. This is why a reliable case definition for CFS will start with the assumption that emerging illnesses are different, base those assumptions of the primary symptoms of each illness, and work from there.

When reading a CFS research paper, one has no idea of whom the patient samples are comprised. Does this researcher include in his patient samples people who have Fibromyalgia or MCS (multiple chemical sensitivity)? Does he or she include patients with anxiety disorders or post traumatic stress disorder? There is simply no way of knowing, and many CFS researchers seem to want to keep it that way.

Rationalization 3: Being Exclusive is a Greater Danger than Being Inclusive

The 1994 case definition warns researchers of the danger in being “exclusive”. The authors took great pains to advise researchers to include a vast representation of fatiguing illnesses in their research samples. This is a popular rationalization for the broader case definition for CFS. Regardless of this assertion, until markers for an emerging illness are found, it is safer and more reliable for researchers to make sure their research samples comprise a homogenous group of patients.

Would it make sense to include butterflies in moth studies just to be sure you were not being “exclusive”? After all, both have wings, can fly, begin their lives as larvae, and are worthy of study. How about being inclusive and placing apples into studies on oranges? Both are round, sweet, and are even classified as belonging to the fruit family. Here, it is easy to see that clinical distinctions are not immaterial to effectiveness. A truly conscientious researcher will be far more concerned that he has moths in studies of moths, rather than be preoccupied by the idea that he might be unfairly excluding butterflies.

The 1988 Working Case Definition was written as if it was more concerned about homogeneous research samples. A CDC pamphlet from the early 1990’s explains, “The case definition is deliberately restrictive to ensure that most of the cases that meet it do in fact have CFS. Although many true CFS patients may be excluded by this definition, a less restrictive definition would also include a number of non-CFS patients”. What happened to this view? The 1988 definition was more in keeping with sound research principles. The CFS research community abandoned this later on as the pressure to fund various unmet needs under the CFS research wing grew stronger.

The idea that exclusiveness is a great danger to the research of emerging illnesses is more than just a trendy idea; it is a bad idea as well.

Rationalization 4: Co-morbidity requires integration

Some researchers may cite co-morbidity as a good reason to encourage integration of illnesses with differing distinct symptoms. This argument is based on the suggestion that suffering from CFS may raise the likelihood that someone will develop Fibromyalgia, MCS, or depression. Many in the CFS research community claim this is a suitable rationale to treat, research, fund, and manage these illnesses as the same disease.

For example, a widespread number of distinct medical conditions may result from the long-term systemic damage of diabetes. What if the CFS research community’s advice was taken, and patients with kidney disease, retinopathy, and arteriosclerosis were mixed into diabetes research samples due to “co-morbidity”? All of these conditions can result from diabetes. However, that does not mean they are pathologically the SAME as diabetes. And, any researcher who was told they were due to “co-morbidity” would be making a huge mistake and creating a lot of confusion and havoc. This illustrates the danger of ignoring distinctions and crafting an unreliable foundation based on a rationalization derived from “co-morbidity”.

Rationalization 5: Different insults, different results = evidence of the same illness?

This rationalization has many forms. One researcher may say “different insults, same result”. Another might say, “different insults, different results”. Still another researcher might say, “same insult, different results”. And, still even more confusing, another researcher might say, “different insults, different results, same illness”. Pass the smelling salts; I am getting dizzy!

This rationalization supports the idea that the differences in the “results”, and “insults” under the CFS case definition are interchangeable evidence of uniformity. And, regardless of how these words are ordered, they always sound the same. Remarkably, this rationalization often claims that there are so many symptoms, treatments, causes, and differences, that these patients must have the same illness! This rationalization is often based on an unwavering confidence that the CFS definition is catching a homogenous group of patients.

In the Winter 2003 issue of The CFIDS Chronicle, one researcher explains how vastly different symptoms, causes, treatments, could lead to the postulation that all is well with publicly funded CFS research. He says CFS may be a “common response to more than one insult”, like “arthritis”. “They all present the same way as far as the patient is concerned, but their causes, treatment, and prevention are completely different.” He rounds out this idea by saying that current CFS research standards have painted a picture of a “common final response to quite different causes.” This is a frequent justification for merging various different fatiguing illnesses under the same research, advocacy, and treatment approaches.

So how about it? Has he stumbled onto a new breakthrough? At the least he could say you cannot prove, beyond a shadow of a doubt, that he was wrong. But I think it is more likely that this rationalization ignores some severe problems.

As we saw in Part 2 of this series, it is very difficult to see vastly different patients now included in the CDC’s CFS definition as “the same response” or “presenting the same way”. Many of these patients appear much more polar than they “present the same way”. It is an acceptance of the difference in the DISTINCTNESS, severity, and other important clinical features that truly is necessary to draw up a more reliable appraisal! Different forms of arthritis have some very distinct common features, but many patients now being caught under the CFS research definition are much more likely to have even more distinct differences.

But a more striking a problem with this idea is how it appears if you really think about it. Here is this extraordinary new equation:

Distinctly different symptoms + distinctly different treatments + distinctly different causes = “common response” = “present the same way” = same illness

You can be assured that if I came up with that equation in Ms. Wade’s class, she would have sent me back to the blackboard. More differences don't add up to an assumption of similarity.  In addition, the addends in this equation would lead most researchers to conclude that there may be different illnesses now being funded under the CFS research structure. Even so, many CFS researchers claim these vastly different results are evidence of the opposite - sameness.

The truth is that differences in symptoms, treatments, and causes of CFS in many patients could be as much evidence of distinctness as anything. And, this is far from a reliable justification for the current "integrative" approach to CFS research.

Common threads

Above are some of the commonly-heard rationalizations for the current state of affairs pertaining to CFS research. I can’t prove, beyond a shadow of a doubt, that they are not true. However, I can prove, using real world examples, that they are dangerous assumptions upon which to base both research methods and standards. Unfortunately, that is exactly what has happened in the CFS research community.

There is another common thread. All of the creative rationalizations for the current case definition seem to downplay very unique clinical distinctions. A distinct symptom of thirst after eating can give researchers clues as to the pathological nature of diabetes. There is no reason why observing such distinctions in the unique nature of the fatigue CFS patients couldn’t be useful as well.

Some researchers are challenging both the shaky foundation and the trendy assumptions that proliferate within CFS research circles. I applaud these researchers. But across the chronic fatigue syndrome (CFS) research community, you are more likely to find a blanket of silence, rather than a demanding call for reform. Much of what is funded today under the name “CFS” may be different illnesses, research models, and special interests. To solve the problems in CFS research, those working the case definition will have to acknowledge these problems and construct a new foundation for CFS research that is based on reliable methods.

Wrapping It Up

Looking back on my grade-school days, I now realize that I deeply misunderstood Ms. Wade. I thought she was my enemy; but in reality, she was my friend. While my other teachers turned a blind eye to my inattention to detail, Ms. Wade refused to budge on her time-honored standards. She knew very well that if I continued to hand in crumbled pieces of paper, in a few years my reputation would be sacrificed. She also knew that what may have appeared cute at my current age, would not appear so cute later on. My freewheeling, sloppy, approach to my homework would work fine for grade-school days; however, it would lead to a loss of credibility, respect, and poor results if allowed to continue.

Ms. Wade also listened to my rationalizations. I’ll never know for certain why she always demanded an explanation for my sloppiness. At the time I thought it was for her own entertainment, or that perhaps she just wanted to see me squirm. Looking back, I believe that once, just once, she dreamed I would tell it like it was, instead of tell it like I wanted it to be. She wanted me to stand before her and admit that while I did have reasons for my unintelligible homework, they simply weren’t reliable or even reasonable. If I had done this, she knew she would have set me on a more successful path.

One of the most challenging problems that those with CFS face is that their friends, neighbors, and even family don’t believe their illness as credible or disabling. The CFS research community, which generally polices itself, has often compounded and contributed to this problem. When CFS research is often perceived as lacking credibility and yielding uninterpretable results, it affects those who suffer from the illness. It is more than simply a matter of churning out research that suggests CFS is a behavioral issue, which it is not. It is more than likely a problem of how that research is churned out. Those who suffer from CFS are often seen as products of the conflicting, confusing, politically generated research that often is produced by the CFS research structure. Their sloppy performance can place us in the wrong treatments, lead to a delay in progress, and add to the lack of credibility and controversy surrounding the illness.

Like Ms. Wade, I just want an end to the “good ones”, the rationalizations, and the poor results. As someone with CFS, I long for reform and respect to be brought to CFS research. The Shaky Foundation doesn’t just affect the credibility of the CFS research; it affects me as well. It is time for the ideas that support the Shaky Foundation to be replaced with logic, credibility, and reason. It is time for a solid foundation.