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Advocacy Ruts - Part 2

M. E. Advocacy

By Craig Maupin at http://www.cfidsreport.com

What is M.E only advocacy?

A chronic fatigue syndrome (CFS) sufferer reads a passionate letter to a Congressional committee . In the letter, she describes a multitude of tribulations with which many of us can readily empathize.   She outlines the sloppy, inadequate approach the government has taken in addressing the illness.   She talks about substandard treatment by the medical community, insurance companies, and Medicaid. And finally, she eloquently states how disabling her illness is, and how the public is apathetic and uninformed. Then, in a passionately delivered finale, she shares what she feels is a solution that will put an end to these problems: these problems will be solved if we rename the illness myalgic encephalomyelitis.

Mention the term “M.E. advocacy” to someone who is unfamiliar with traditional M.E. or CFS advocacy approaches, and you may get a blank stare.  However, most who are aware of recent advocacy efforts for this disease would be familiar with ME advocacy. A long-standing advocacy strategy has developed around two terms, myalgic, denoting muscle pain or dysfunction, and the brain-central terms encephalomyelitis or encephalopathy.

These efforts have provided a hopeful strategy for many.  Many advocates believe the term myalgic encephalomyelitis will eventually place the illness on a physiological foundation. Some advocates have made these two terms the centerpiece of their strategy for eradicating this devastating disease.  One advocate declares, “Let it be made clear that the campaign to restore the name and recognition of myalgic encephalomyelitis is well underway.   We are prepared to be persistent.”

Is it effective?

But has M.E. advocacy been effective?   Is this approach making headway, creating credibility among the medical community, and reinforcing recent strides in research?   Should we ensure that each of our methods of advocacy conform to M.E advocacy? Or, does M.E advocacy have limitations, or even cause unwitting damage?

Why the Popularity of M.E.-only advocacy?

There is more than one reason many feel that the term of M.E should be the foundation of their advocacy efforts.   First, M.E. definitions are much closer to a homogeneous illness that many with CFS describe. The hallmark post-exertional symptoms of the illness, as well as orthostatic and circulatory dysfunction, are headlined in the M.E. definition.

Many feel M.E. advocacy takes into account a longstanding heritage, history, and tradition. Some insist little has changed in our knowledge of the pathology of the disease in the 50 years since the name , myalgic encephalomyelitis, was created.

Quite a few M.E advocates prefer a term that will emphasize either brain-predominant fields of research or the symptom of muscle pain. Others feel that the symptoms and pathology of myalgic encephalopathy would more closely describe the pain of fibromyalgia syndrome, an illness whose broad symptom set is not fully recognized. One advocate says:  “I would also like to change the name of FMS (Fibromyalgia)  to M.E as it doesn't fully describe the severity of its impact on sufferers.”  She adds that the myalgic in M.E. will help recognize the muscle pain of “Fibromyalgia, another indescribably debilitating disease that often goes hand in hand with ME/CFS. ”

Finally, the most likely reason many have placed their advocacy efforts behind the term has to do with the devastating resonance and serious intonation of the name itself.  As one patient says, “I have found that people take me more seriously if I say I suffer from myalgic encpaphalomyelitis, rather than chronic fatigue syndrome, when they immediately think I am just tired.”

Given these justifications, why would M. E. advocacy not help us achieve steady, long-term progress? For many years, this style of advocacy has offered many inspiring hope, simplicity, and a sense of promise.   Could so many be so wrong?

Yes.   They could.   M.E. advocacy is simple, and it has been around a long time.  But, it doesn't take into account some very harmful problems. 

Making the Brain Foremost…

Beyond the Brain --- Without a doubt, the prefix encephalo is a term that steers clinicians and researchers to brain predominant fields of study. One advocate says that, “some patients' symptoms may be brain-predominant, others muscle myopathy predominant…”

The battle to secure the term M.E. must focus on symptoms of brain dysfunction.  If we truly desire a brain foremost term to represent the illness, then we must make a case that a poorly functioning brain is a primary pathological feature of the illness. This is a political and scientific reality.

And yet, while there is consensus among M.E advocates that the brain should be the predominantly featured term, there is a longstanding disagreement over what the appended suffix should be.

Does it really matter if it is ‘opathy’ or ‘itis’

One advocate states that the scientific community has “become entrenched in their opposition to the adoption of Myalgic Encephalomyelitis.” He goes on to say that by refusing to name the disease after brain inflammation, the CDC has conspired by “ choosing to ignore the 50-year clinical history of the disease the rest of the world called Myalgic Encephalomyelitis.” Later, he urges patients to continue expending their time and effort on securing the term encephalomyelitis, claiming the term will eventually help to build public credibility.

But science is clear that the term encephalitis or encephalomyelitis (acute brain or spinal inflammation) has not been shown to be pathologically correct. As another M.E. advocate correctly explains, this approach is significantly affecting our credibility. ”We have now reached the point where there just isn't enough robust scientific evidence to continue to maintain that encephalomyelitis is a pathologically correct explanation for the type of brain abnormalities that undoubtedly do occur in this disease.”

As a solution to this problem, M.E. advocates have decided to continue the M.E. advocacy under 'encephalopathy', a broader term which describes a dysfunctional brain state.  As one M.E. advocate explains: “…It is possible to argue with the medical establishment that the term encephalopathy could be applied to these abnormalities, and in so doing the term M.E. can be maintained with justification.” He continues by saying “it should be perfectly acceptable for patients to use the term M.E. - even if their doctors want to refer to CFS…and this is an important step forward.”

However, many assert that encephalopathy would undoubtedly steer public perception of the illness toward any or every brain-predominant field: neurology, psychiatry, and psychology -- a grave mistake. Not one of these fields have been a consistent resource of strength for producing exclusive CFS research findings that do not overlap psychiatric illnesses. Additionally, none of these fields seem packed with ardent supporters of the idea that the illness is physiological. Encephalomyelitis, they say, would make the illness undoubtedly physiological. After all, shouldn't that be the goal of our advocacy, rather than just landing the disease in confines of the brain?

In this case both camps are accurate about the shortcomings of the opposing view. However, one question remains unanswered. Must the only effective alternative to the degrading name “chronic fatigue syndrome” be wholly brain central? And more importantly, what are the effects of a brain-central term on us, those who the term is going to represent?   Neither camp, encephalomyelitis or encephalopathy want to talk about this.

So much attention has been paid to what effects various suffixes would entail, that little or no discussion has been given to the validity or the effects of a designating the illness as brain pathology.   What are those effects?   And why is it important?

The Unseen Costs of M.E.-only advocacy

Is emphasizing the brain counterproductive?

Year in and year out, researchers dealing in fields of research unrelated to the brain have been some of the strongest supporters of the physiological basis for CFS. Additionally, symptoms whose footprint may fall outside the brain are also the most distinct symptoms shared by those with the disease. In the last 15 years, research on immune irregularities, circulatory abnormalities, and metabolic dysfunction has produced some of the most exclusive findings under CFS funding streams.

Even when the brain has been theorized to be the root cause of CFS, the postulations have often been inconsistent and hardly exclusive to this illness. Neuroendocrine and HPA axis research, abnormalities often cited by psychiatrists as markers for CFS, have questionable overlaps with other fatiguing and psychiatric illnesses, such as PTSD and anxiety disorders. Brain perfusion abnormalities are likewise seen in many psychiatric illnesses.  Isn't this a good reason to avoid a name focusing only on brain pathology?    If not, why not?

Emphasizing brain dysfunction will not be an effective strategy in steering away from a behavioral/psychiatric model. An increasing emphasis on brain pathology is exactly where the behaviorists and psychiatrists are headed. The long debated question of whether illnesses of brain chemistry or dysfunction are behavioral or organic is -- and will for some time continue to be -- heatedly debated.

In one such example, a leader of a clinic in the U.K. claims that encouraging patients to view their illness as brain-central has a political and social benefit of palliate them toward compulsory psychiatric care. He states: “The focus on brain chemistry has the advantage- from the patient's standpoint- of keeping their illness firmly within the bounds of soma rather than psyche. From a social scientific point of view ... it reflects a distinctive twentieth century understanding as to how psychiatric factors can be conceptualized…' (Banks & Prior 2001: 19)

The preceding researcher's blend of brain pathology has questionable overlaps with previously defined, psychiatric disorders. Unconcerned about this problem, he continues by emphasizing brain chemistry has effectively palliated patients to behavioral treatments for these illnesses his clinic is known for. “This was done by introducing the concept of `brain chemistry' causations for CFS, casting it as soma.”

Dr, Simon Wessely, a U.K researcher who often seems to relish public limelight, holds no punches in stating where he believes the pathology of the disease lies, "... the brain is a more likely place to look for the causes of CFS/ME than elsewhere." He frequently bristles, in almost an insecure fashion, at any suggestion of overstating objective microbiological or circulatory research findings that would fall outside the brain. He adds "...psychiatric disorders, anxiety and stress can, and do, cause changes in brain function and chemistry, and they do. That is just a simple fact. "

Michael Sharpe is another researcher who has participated in the same school of thought. “Modern neuroscience is reminding us that symptoms do have a physiological basis, and these are explanations that patients find more acceptable... Whatever their biological basis, there is strong evidence that symptoms and disability are shaped by psychological factors.”

The scientific community must be convinced that involvement of cerebral regions is predominant, not secondary, if a brain-central term for the illness is to be accepted. But have we ever stopped to ask, where does this approach lead? Are we going to emphasize HPA axis, neuroendocrine abnormalities, and cerebral perfusion dysfunction in order to obtain the M.E. term? If we choose to do so, the issue of whether or not these are “brain chemistry causations for psychiatric disorders” or are influenced by behavior will remain in play.

In his book, Chronic Fatigue Syndrome: A Biological Approach, Dr. Kenny DeMeirleir assembled a variety of talented and respected researchers from around the globe. Taking turns, these researchers presented a compelling amount of objective findings that established CFS as an organic and systemic illness. These researchers did not use subjective questionnaires, neurological theories, feelings, or sociological musings to support their ideas; rather, they used objective laboratory instruments: Rnase L, T cell activation, and blood cell abnormalities. CFS, Demeirleir says, has microbiological roots. “Innate immunity dysfunction would be a more accurate name for CFS.”

Neither encephalopathy nor encephalomyelitis can underscore the important strides current research has made towards understanding CFS. Underscoring and supporting contributions of researchers whose field of expertise lies outside the brain is a key component to finding a cure. It is becoming increasingly difficult to do so, and even counterproductive, with an advocacy strategy that insists on brain pathology as primary.

Fatigue or Myalgic – Which symptom could be problematic?

It is easy to see the problems a name like “chronic fatigue” would bring. Shortly after the name was adopted, concerned advocates warned that the term would steer researchers down a broad and unstable path. Unfortunately, they were right.

Chronic fatigue" is a shotgun name, and the broad term has been a detriment to research and clinical care, as well as public awareness of CFS. If a name is "what you make of it", "chronic fatigue" has made a potpourri.   Confusion about what CFS is, or isn’t, has been commonplace. Definitions for CFS have been constantly broadened, and various “fatiguing” illnesses have been merged into CFS research samples. These "fatiguing illnesses" often don’t have the hallmark symptoms of CFS, notably severe exhaustion after exercise and circulatory symptoms.

Symptoms chosen for a name greatly influence focus, and the symptom of “chronic fatigue” steers just about anywhere and everywhere. One patient hits the nail on the head when she says, “Even my friends could not understand that I'm not 'just tired'. Almost every illness has the symptom of “chronic fatigue”. "

M.E advocacy is perceived as a solution to this problem. But this raises an important question: “Are there other organic myalgia-predominant illnesses being confused with CFS? And even more succinctly, are there myalgia-predominant illnesses in which the vast majority of patients do not have severe exercise intolerance that is a hallmark of the disease? The answer is unequivocally, ”Yes”.

As one fibromyalgia patient states, “I would also like to change the name of FMS (to M.E) as it doesn't fully describe the severity of its impact on sufferers.” Another says, “CFS/ME also affects those with fibromyalgia, Hopefully one of these days people will recognize both as legitimate debilitating diseases.” She feels the 'myalgic' in M.E. will help recognize the muscle pain of “Fibromyalgia, another indescribably debilitating disease that often goes hand in hand with ME/CFS.”

When fibromyalgia funding lagged in the early 90's, a host of researchers took the advantage the broad CFS definition afforded to fund their research.  Researchers such as Goldberg, Buchwald, and Yunus are examples of those who claim that CFS improves with graduated exercise. These researchers tend to emphasize myalgia, pain sensitivity, and brain pathology as the predominant features of the illness.

Fatiguing illnesses may indeed be muddying CFS research samples. However, the confusion created by the symptom emphasis is never a one-way street.  The term myalgia can cause confusion as much as the term fatigue.

If the case can be made that the term “chronic fatigue” is undermining the distinctness of the illness, then it is reasonable to suggest that emphasizing the symptom of muscle pain (myalgia) can have the same effect.  Attend a CFS support group meeting anywhere in the U.S.. There you will find many fibromyalgia patients whose condition improves with exercise (some very strenuous aerobic exercise) and who show very little of the metabolic dysfunction seen in CFS. Fatiguing illnesses are not the only illnesses that may be muddying the waters of CFS research and diagnosis. Myalgia-predominant illnesses may perform that task as well.

Is M.E. the only hope for a reliable Case Definition?

There is a deeper motive for taking up M.E. advocacy. The Ramsey-based definition for M.E. emphasizes the most distinct symptom of the disease, activity/exercise intolerance. It also highlights the distinct symptom of circulatory dysfunction or orthostatic intolerance. These symptoms have important clinical significance. If applied, they can lead to a more effective diagnosis, as well as improved samples for research.

If I were to become an M.E advocate, the advantages of the M.E definition would be my best justification. The M.E. description of Ramsey is very close to the distinct illness that I suffer from. M.E. definition also wisely group neurological dysfunction, rather than place each neurological symptom on equal weight with more exclusive symptoms. However, to stop here makes two assumptions.

First, the M.E. case definition requires patients to experience delayed muscle recovery after exertion. Slower recovery and post-exertion symptoms are certainly hallmark features of the illness. But in my case and the cases of many others, post-exertional symptoms have constituted more than just slow muscle recovery or myalgia. For many, flu-like symptoms, overwhelming metabolic collapse are their most disabling post-exertional symptoms.

The second reason has to do not only with the need for reform, but the most politically effective way to achieve that reform. M.E advocacy is not solely based on advocating a definition; it is also based on advocating a term. By demanding the case definition and the M.E. name be linked together in our advocacy efforts, we reduce our chances of repairing either. Could it be possible that the strength of M.E. is not the terminology of the name, but the distinct symptoms, the simplicity, and the use of classification within the definition? I believe it is.

Some are encouraging advocates to spend their efforts on a move to separate CFS and M.E.   Under this proposal, those with M.E would have a physiological and distinct illness, while those with CFS would suffer from a broadly morphed dysfunctional state. This proposal leaves behind some of the best physiological research findings. Also, diagnosis of either CFS or M.E. would likely hinge on the personal philosophy of individual clinicians. Even more problematic is the fact that this proposal doesn't augment our credibility; it merely provides two choices. Wouldn't it be better to repair the CFS definition once and for all?

We should emphasize our common goal of having distinctive, hallmark symptoms emphasized in a new, revised case definition. However, it is politically more feasible to gain that inclusion without inflexible insistence on the M.E term and verbatim definition. Insisting neurological symptoms be grouped rather than individually featured, orthostatic and circulatory symptoms be added, and the fatigue and post-exertional symptoms of the illness be properly defined are the most pragmatic option for successful reform.

The Great Assumption – The First Impressions Trump Card…

The most likely reason M.E. advocacy give many hope has to do with the gravely and serious intonation of the name itself. As one M.E. advocate says, “What's in a name? FIRST IMPRESSIONS - Everything!” Another adds, “Myalgic encephalomyelitis sounds serious. 'Chronic fatigue' does not.”

I vividly recall hearing a severely disabled M.E advocate describe how she became an enthusiastic supporter of M.E advocacy. She observed the differing reactions of her neighbors’ when she told them she had chronic fatigue syndrome or myalgic encephalitis. Although her neighbors weren’t sure what the terms 'myalgic' or 'encephalitis' meant, they reacted much more sympathetically to the technical reverberation than they did to the benign sounding, 'chronic fatigue syndrome'. Based on this outcome, she felt the grave first impression 'myalgic encephalitis' conveyed was a strong justification to base her future advocacy efforts around the term. It is undeniable, the name myalgic encephalitis sounds ominous. For that reason alone, it entices many advocates as a seemingly simple approach on the road to success.

But even if M.E. was universally adopted, would this be enough to make the controversy surrounding the illness cease? An abstruse or technically serious name will NOT place an illness on a physiological foundation. EXCLUSIVE research findings which are accepted by the greater scientific community, and a name that IS BASED on that research, are!

I remember reading of a public discussion regarding the name change a few years ago. Along with the typical support for encephalitis and encephalopathy, there was a spattering of support expressed for terms centered on, or derived from, neurasthenia. I found that troubling yet revealing. Neurasthenia is a term that, like myalgic encephalitis, possesses a serious and technical resonance.  Neurasthenia was originally viewed as a physiological and disabling illness. Today, neurasthenia is primarily considered a hysteric's disease. So, why were patients advocating the term? Could it be that they were often allowing first impressions to overrule long-term efforts to find a solid foundation?

Fibromyalgia is another name that has technical obscurity. Has this helped boost Fibromyalgia awareness, funding, and treatment to levels commiserate with the damage the illness has caused?   Hardly. Technical obscurity, grave first impressions, and serious intonation are not a trump card. An obscure term may have short-term benefits, especially with laymen, but those short-term benefits are not enough to replace the public or medical community's apathy with an unshakable and lasting foundation.

The Greatest Cost of M.E. Advocacy

It is not just what M.E advocacy does that is the problem, it is what it doesn’t do. The largest problem with M.E advocacy is that advocate's faith and hopes are placed in something that will not -- due to real scientific and political limitations -- deliver. This has profound and severe consequences.

I understand that some feel an advocacy style centered on the term and tradition of M.E. has been, or is going to be, effective. However, some advocates feel it is the ONLY way to be effective. It has no limitations. There should be a litmus test for proposals to be “pure M.E. terminology, pure Ramsey”. Has securing the term "encephalomyelitis" become our focus? If so, this will be the most costly aspect of M.E advocacy.

Certainly, most advocates do not fall into that category. In fact, many would concede that all possibilities to achieve our goals should be on the table.

But this moderation doesn't represent the entire community. Many of our most passionate advocates are convinced that all advocacy efforts should be filtered through the term M.E. If large portions of our community are convinced there must be only one way to meet our objectives, then our odds of succeeding are very limited.

Without a doubt, M.E. advocacy was born of real needs, heartfelt loss, and a need for reform. These provide a solid base for successful advocacy. But, successful advocacy will require flexibility, modernization, and a constant reexamination of the our advocacy approaches. M.E advocacy can provide a good clue to our common needs, but our methods of addressing those needs may need to change to realize final success.

 

Author's note:

Hope is an important concept. Hope is indeed the engine of advocacy, change, and progress. And admittedly, much hope has been invested in M.E. advocacy. Perhaps it is this hope that has been one of the reasons many feel the topics discussed here are often seen as taboo -- better left unsaid.  The topics in this op/ed have been privately discussed for years. But publicly, behind the whispers, there has often been an intimidated silence.  Get in the way of hope, and you might find it uncomfortable.

There is hope. As a international community, we possess a common ground and consensus that is truly remarkable, yet often ignored. This consensus transcends borders and languages. There is widespread agreement that the term “chronic fatigue syndrome” has made the illness a nonstarter politically and publicly. There is also a widespread agreement that the integrative definition, which attempts to mix various fatiguing illnesses into CFS research samples, is unsound. And finally, there is a consensus that the physiological basis of this illnes has long since been established. This consensus is important to remember, as well as the common goals that we all have of finding a biomarker, increased public awareness, and eventually, a cure.