A COLD BLAST FROM THE PAST? OR COMMITTED TO THE FUTURE?

Will a Reformer Step up on the CFSAC?

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

There is more behind forward progress than determination, wisdom, and heart. There comes a point in every human struggle when we realize it is impossible to advance on our own. We realize there is strength in numbers. We realize we need a friend, and a strong one at that.

For many of us who have longed for a modernization of the federal response to CFIDS, it is becoming clear; we need a friend or two to surface on the CFSAC (HHS CFS Advisory Committee ). If we don’t find such a friend soon, this committee will merely place a rubber stamp on the past, label it innovation, and continue treading water. The early results are trickling in, and true to form this committee has its dominant players, its backseat observers, and its timid seat warmers. That isn’t to say someone on the committee will not find something progressive to fight for; it is simply to say that person hasn’t surfaced yet.

My concern is that this committee is fine with things just the way they are. They are simply filling seats, passing time. They see themselves as caretakers of the current state of affairs and little more. Yet, history often views the “safe” players quite differently than their own comforting perceptions. History often sees the “safe players” as those who slowed progress and failed to acknowledge advancement. Nowhere is this more evident than in a proposal before the committee now, a proposal for a name change.

IT ISN’T WHAT IT APPEARS TO BE

Early in the CFSAC’s (CFS Advisory Committee) work, a broad range of reservations regarding the HHS sanctioned name change have been raised. Then, as if a fearful game of ‘follow the leader’ was being played, little or no debate ensued. Supposedly, the new name, chosen after years of thoughtful analysis, is not “data-driven”. It was insinuated that anything but retention of the current name of CFS is reckless, while commitment to the current name is cautiously protective. A new name would have scientific “consequences”, while retaining the old name shows a respectable commitment to the past. Allegedly, the name “chronic fatigue syndrome” is accurate, scientifically valid, remarkably traditional, and fueled by scientific data. Allegedly, the new name is emotional, not rational.

On the surface, the resistance on the CFSAC to the HHS sanctioned reform of the name appears political. For years, many different researchers have been able to play it ‘fast and loose’ under a broad “fatiguing syndrome” definition set up by the CDC in 1993. Fibromyalgia, PTSD, psychiatric illnesses, may all be researched under CFIDS funding streams. The CDC has been slow to reform these problems and even at times defensive about the low standards. Whether fair or not, the defense of the current name, Chronic Fatigue Syndrome, will be viewed as a defense of a wide variety of special interests. Even so, there is no doubt that some of those on the CFSAC desperately clinging to the status quo see themselves primarily as “protectors of science”. It is that view that deserves some discussion.

A HOST OF CONCERNS

This committee has its dominant, take-control members. What committee doesn’t? I have sat on committees before, and I know that each committee has a “dynamic”. There are also those who bring no original ideas. They are simply there as supportive “echoes”. I know what it is like to sit in the back of a committee meeting, waiting for the love fest with tradition and the powerful personalities to end, waiting to make a difficult challenge to the status quo. It isn’t comfortable, but every time needed reform becomes reality, someone must believe in reform enough to fight for it.

Should a courageous reformer come forward on the CFSAC to defend the name change, they will have a remarkable assortment of arguments at their disposal. There are several pertinent issues. One, is the old name, “chronic fatigue syndrome” scientifically solid, valid, reliable? Does the name “Chronic Fatigue Syndrome” affect scientific research? How were both names chosen, and by what sanctioned process? Did those who chose CFS as a name, or those who chose NDS, overstep their bounds? Many of the critcs on the CFSAC are claiming that scientific progress is being put on the backburner of passionate advocacy. That may be comfortable, but it is not factual.

“Data driven” -- One criticism of reform is that the proposed name change is not “data driven”, while the current name is. It would be interesting to ask which data this criticism would be referring to? This criticism ignores the lack of research standards in CFS research. In the U.K. researchers came up with 2400 people with CFS per 100,000. Another study in Australia cited CFS prevalence as 37 per 100,000. Leonard Jason came up with slightly over 400 per 100,000, while the Wichita survey yielded about 180-225/100,000. So, which data should “drive” the name?

Even more poignant a question is whether the current broadness of the name “chronic fatigue syndrome” is playing a role in the inability to attain consistent data. The NCW ( Name Change Workgroup) was charged with choosing a name that reflected the current state of knowledge about CFIDS, not play “data” cop or symptom favoritism. Insisting that the NCW should have chosen some “data” displays a lack of knowledge of the current problems in CFS research. The NCW correctly sidestepped the issue of whose data was accurate and stuck to the task at hand.

“Care and thought” -- This second criticism claims that “care and thought” are being sacrificed to passionate but misguided advocacy. Under this argument, those who feel comfortable with the current name are careful, cautious protectors of scientific process. Whereas, those who want reform are passionate, emotionally guided advocates.

Yet, the facts don’t support this assertion. There is no similarity between the levels of care and thoughtfulness that went into the two names under consideration. In 1988, those who penned the name “Chronic Fatigue Syndrome” not only spent the lesser part of a few hours in the afternoon on the task; they were not sanctioned to complete the task to begin with.

In contrast, the HHS sanctioned the NCW to choose a suitable name, and then they painstakingly took three years to complete their commission. The NCW appropriately based their name on the current state of research, not a “feeling” (had they done so they may have come up with a different name). They took a great deal of care in how they proceeded. There is no comparison between how the two names under consideration were chosen. The current name, CFS, was an afterthought to a greater task. The sanctioned name, NDS (Neuroendocrineimmune Dysfunction Syndrome), was compiled after years of thoughtful debate and consideration, by researchers and scientists committed to common sense approach..

“Scientific Validity” -- Is “chronic fatigue” the primary feature of CFIDS, a feature that should be emphasized in the name? Or, is this systemic illness that affects the body among a wide variety of systems. Critics of the name change are simply mistaken on the answer to these questions. Unlike the name “chronic fatigue syndrome”, the NCW chose not to claim a primary symptom or pathological region of the body. Instead, they based their choice on the current state of research. And despite the critics, an illness that affects a broad variety of body systems is where CFIDS research is today.

The NCW did not choose a cause of CFIDS. Had they done so, they would have reaped nothing but controversy. Instead, they chose an intermediate term that reflects the current knowledge of effects of CFIDS. Multiple Sclerosis, diabetes, AIDS, and a host of other names for various illnesses do the same. It is important, given what we know about CFIDS, that a symptom or region of the body is not declared primary.

“Case Definition” -- Another of the criticisms of the NCW proposal is that critics do not support one of the numerous case definitions now used for CFIDS. First, the NCW did not choose a case definition. That was not their task. The NCW refused to play favorites and endorse any one view of the illness. They made clear that until reform of the case definition is set, that this name may need to include a vast array of stakeholders. Secondly, it is simply not necessary to wait for reform of the case definition and much-needed research standards before changing the name. The two do not need to be combined issues, as critics allege. The NCW’s proposal in no way affects the efforts to reform the case definition. The NCW proposal, as it stands, merely makes the point that there are different stakeholders who now prefer differing definitions of CFS.

FORGETTING WHY WE ARE HERE

Not only were all these points ignored by the CFSAC, but also the reason the NCW was formed has seemingly been forgotten.There is widespread agreement that the name for this illness is in desperate need of change. This consensus is not only coming from advocates who are concerned the name “chronic fatigue syndrome” will never allow the illness to achieve a public level of respect. There is enough evidence to deduce that the current name is affecting both the scientific process surrounding CFIDS, and respect for that process as well.

The current name has not had a benign effect on scientific inquiry. There is a widespread view that it has been a stumbling block to effective investigation into CFIDS. A study by the University of Minnesota on pathogens and CFS claims it is working on CFS and “fatiguing illnesses”. The CDC case definition alleges research will be effective if it is done for CFS and “fatiguing illnesses”. Without a doubt, the name “chronic fatigue syndrome” is having an effect on the methods, standards, and respect given to CFIDS research. That is why the NCW wasn’t a committee comprised primarily of activists. Scientists were represented on the NCW as well. Make no mistake; with their reputations on the line, these researchers did not forward a name that was “unscientific”. Their involvement in reform is clear evidence that science is being affected by the current name.

The view that the name change should be tabled because of scientific reservations, merely ignores the very reasons why the process of reform was undertaken. It also ignores a past body of research that shows that the cause of CFIDS is not known, and the illness affects more than one body system. To come to any other conclusion is simply not rational. To challenge that foundation is to ignore what the last decade of research has now revealed about CFIDS.

IN DESPERATE NEED OF A COMMON SENSE REFORM

One thing is clear; we need a reformer capable of articulating a clear, common sense approach to reform on the CFSAC. For those of us who long for a more modernized federal response to CFIDS, we need a few friends. Whether these friends surface in the U.S. Senate or the agencies charged with overseeing research should not be our primary concern.

The CFSAC can move forward, or they can blindly cling to tradition. History will record it. Future generations will discuss it. I just hope someone, somewhere on the CFSAC believes it, and rises to the challenge.