CYTOKINES, FLU, NEUROPATHIC PAIN, CFS/ME, AND DR. STEVEN STRAUS

Will The Important Connection Be Made For Us?

ŠJudith Fleet Wisdom, M.A.

It is almost a truism to say that every effort must be made to have respected medical-scientific findings that are relevant to our illness be publicized in ways that help garner public and medical recognition for CFS/CFIDS/ME. Such recognition is one of several factors that can be an important force in helping remove the stigma that has long been attached to our illness.

With the reduction of stigma, hopefully, we then can be better positioned to accomplish many things: e.g., (a) attract talented researchers and also research funding; (b) have clinicians and researchers be creative yet more free and thus creative about generating hypotheses to investigate the complexities of our illness; (c) motivate clinicians to develop new treatment protocols that might help us and might also lead to further research; and (d) have PWCs be granted the kind of social and financial aid we now have to fight too hard for and too often don't get.

That's a considerable list; yet there is nothing on it list that we don't desperately need.

Which makes it hard not to conclude that everyone who has the opportunity to add popularity and respect to  this illness certainly should be active in doing so.

Given that physicians have so much status in our society, they are often better able than are patients to "grab" the "microphone," especially if they already are near it and reporters are giving them "air" time.

In fact, I'll go so far as to say that for CFS/CFIDS/ME-related researchers and clinicians PART of their medico-scientific responsibility is not just working with test tubes or treating patients but getting the word out. Not to do so, I'd be willing to argue, can almost be viewed as somewhere between (a( being very unimaginative to (b) being opportunist (worrying about their status/position with other of their professionals) to (c) being guilty of a kind of medical malfeasance or malpractice.

Those are fightin' words. But look where we are with respect to the issues mentioned above. And look where we still have to get! And who in the medico-scientific "community" can we rely on to stand up for us who has clout and status? As I survey the scene, I see "no one."  And that is, given the seeming astronomical rise in laboratory and research studies (published and not yet published), in contrast to our place on the medical and socio- political health and welfare map, PITIFUL.

There are many examples of this medico-scientific wimpy (not a very "professional" word, but not an inappropriate one) behaviored malfeasance, going back to aspects of the September l8 conference (1). Though I do not presume to read the minds of others, a dangerous practice that I abjure, I, as a medical sociologist of some considerable experience working in medicine and as a recipient of much medical practice (that is, an observer through both prisms- -the sociological one and the PWC patient one), I feel comfortable in offering up reasons for this social conservatism on the part of our doctors.

It can be understood by a fairly simple analysis of the social organization and social forces (or pressures) within the larger medical world in which physicians and medical research Ph.D.s function.

To make a claim that this disease is physiologically based in general and in some specific way is not much of a problem with respect to the careers of M.D.s and Ph.D.s when they speak to true believers, however smart and critically minded those true-believers are (and I hope they and we are). But it is a different story with skeptics. To speak out about a controversial illness to the public at large, who is skeptical, in a society given to labeling poorly understood illnesses as in the realm of the malingering/hypochondriacal/hysterical/somatiform/psychosomatic (2), where those same prejudices run through the medico-scientific community can lose status for a doctor or medically based Ph.D.a doctor status and respect. And they are not at all unaware of that. To cover their professional derrieres they regularly, therefore, when speaking beyond the safe confines of a PWC sympathetic crowd pull in, get very conservative, don't expand the knowledge and information given to the larger medical community and general public. (3)

In taking care of their own careers (sometimes called "opportunism" and often, of course, being an example of their ultra conservatism), in playing it safe with the colleagues in their profession they are misrepresenting the science we KNOW they know. They've said it to us when they were in the privacy of a CFS/CFIDS/ME audience. Out of the "closet" they go into reverse. We naturally feel let down. As if we've been had.

But it is, of course, worse. It retards the possibility of moving our cause ahead. This means probably years more of suffering, physically, socially, and in many cases, financially (factors that have feedback consequences upon each other, as it doesn't take much to realize, but somehow they dismiss, as if they don't know that illness is embedded in a social system as well as a psychological and spiritual one!). Which is why their conservatism is so serious. And why it is so serious that our advocates don't call them on this. Often cozy up to them, because they are powerful and full of status.

But this is also why we must create a countervailing social pressure to those the pressures I just described, to which physicians and Ph.D.s in medical research are subjected by their peers.

I have a very recent case in point.

In the weekly Science Times section of the March 23, 1998, New York Times (a section which appears regularly on Tuesdays and is a well- known and generally well-regarded newspaper published in the United States), there was a short piece that caught my eye.

It referred to an medical article published by our "own" Stephen Straus, M.D., in the Journal of Clinical Investigation (no date or volume was given--the only reference mentioned was that it was last month's issue, presumably, thus, the February issue).

It reported that some recent research of his had identified that two particular cytokines, interleukin-6 and interferon-alpha, were found to be responsible for a good deal of the systemic and rather nasty suffering associated with the flu strain, A/Texas/36/91, which apparently is a fairly current strain, at least, presumably in the U.S., though the Times article didn't make its location clear.

The Times article went on to mention, what most, if not all of us, know all too well by now, that the symptoms of patients who are afflicted with the flu suffer are actually in large measure the result of the immune system doing its job in fending off the pathogen, i.e., the results of those darn old cytokines.

By now we also are familiar with the fact that one of the big hypothesis about what is going on in our disease is that we also have elevated cytokines, which causes us to suffer symptoms similar to that of the flu. One of several examples of this is post- exertional malaise, sometimes also called "exercise intolerance."  Additionally, there have been serious claims made by respected researchers, as well as some published research, indicating that we actually have elevated cytokine levels, though the reason we do still remains elusive and/or has multiple possible explanations: i.e, the elevated presence of cytokines in such number has been fairly well accepted, but the reason for this occurring in our disease hasn't been pinned down. But the presence of chronically elevated cytokines remains a very viable formulation for why we feel so rotten. (As in, it's the cytokines, stupid!)

What gives this hypothesis (about elevated cytokines) more support is that in many cases, patients have reported that the onset of their illness occurred with a flu-like episode, but one that didn't resolve, as previous cases had before, with us, up to that point in our lives. (I had the flu zillions of times and in a few days or sometimes longer I was up and about my same activities as before.) Similarly, some patients have reported a severe worsening in the illness with the appearance of a flu-like episode, something different from a flare but not unrelated, (where the flu is not the symptom brought on by something like too much activity, but is like what healthy people get--an infection with a "bug" that's going around, which for PWCs, already sick, has, in the medical literature, especially in Britain, sometimes been called an "intercurrent infection"). In fact in the British Isles the term "post-viral fatigue syndrome" has been used as the name for what we now variously call CFS/CFIDS/ME (although there has been some controversy about that, with the claim that that term should be used for a rather temporary condition that occurs sometimes after a flu, whereas our condition, though similar in symptoms and oft appearing after a flu, isn't so temporary).

More connections.

Coincidentally, the very day I read the report in the New York Times of Straus's published research on the particular cytokines provoked by a particular influenza strain, I also received my copy of the "MPWC NEWS," published by Medical Professionals/Persons With CFIDS," (edited by Lori Clovis and published in Hinsdale, NY, U.S.A., http://cfids-me-org/mpwc/).

In it, was a report of a paper delivered at the most recent American Academy for the Advancement of Science held in Philadelphia, PA, U.S.A, in February 1998.

The paper described research findings by Joyce DeLeo of Dartmouth College (New Hampshire, U.S.A.) in which it was demonstrated that interleukin-1, interleukin-6, and Tumor Necrosis Factor-alpha were found to be responsible for helping "the body heal (it didn't say but that presumably meant after a flu-like infection), but for many patients, the body continues to make these proteins long after healing, causing what is known as neuropathic pain."

No mention was made in MPWC NEWS as to whether this pain was related to the pain so often found associated with CFS, but at least it established a connection between chronic cytokine elevation and pain.

The report in the MPWC NEWS also  didn't mention if DeLeo did research into or speculated about why some patients continue to produce these cytokines and why some did not, though maybe she did and it wasn't reported. (This is the problem with using secondary sources, but when you are too ill with this disease to get to a library . ...So all you can do is mention this limitation to your readers and hope they'll cut you some slack!)

But this research of DeLeo's brings me to the issue I wish to raise here. Steven Straus, because of his long association with CFS/CFIDS/ME, as well as his long association with claiming it to be psychogenic (though occasionally he has waffled on this claim, but has not really come out and definitely and strongly acknowledged solidly a reversal of that view of the illness, and, believe me, some scientists do issue such reversals and find they, as "just people" do, gain MORE respect rather than losing it) is SO well-placed that if HE had made a point, when the press showed interest in his cytokine-based research on the Texas strain of the flu, of connecting his work on this flu strain to cytokines as being similar to work like that of DeLeo and other work and hypotheses about the disease called  CFS/CFIDS/ME, he would have advanced our cause ENORMOUSLY.

And what damage would he have done to himself?????

In fact, he would have appeared to be an even more interesting and broad, synthetic thinker, aware of more arcane diseases that a current flu bug.

He also would have had the opportunity to affect the New York Times, which has studiously avoided any serious discussion of our disease, only to mention it in what is called "press release journalism," as they did long, long ago with the Hopkins NMH discoveries.

Now, maybe, the NYT never contacted Straus, and just wrote the article on the basis of scouring the journals. I have my doubts, since the journal in which his article appeared in wasn't exactly Lancet. And I'd bet by huge wealth (allowed by years of being on SSDI in this country and separated from my earned income!) that they had reporters at the American Academy for the Advancement of Science where DeLeo spoke. For there is a connection between those yearly conferences and scientific journalists. In fact, having been to those conferences myself I recall learning that they are put on for the purpose of attracting the popular scientific press.

But back to the Straus piece in the Times. If in fact Straus wasn't contacted, he surely heard about it. There are phones and faxes at the NIH. The Science Times even has an email address. Why not a call to the Science Times? That is, IF Straus CARES or is AWARE of the strong social obligation upon him and other doctors not just to synthesize medico-scientific knowledge but to do so when it serves the purpose of advancing understanding and respect for our disease.

To be utterly, bend-over-backwards fair, maybe he did and they ignored him. But I'm taking on bets that wasn't the case. Let that be known across the land.

And it doesn't even matter what Straus did or didn't do. No one of our doctors is doing the job needed to be done for us. They are saying one thing in our company and quite another (or nothing) in public or in the medical community at large.

And that is irresponsible. Flat out irresponsible.

To get back to some sociology. If the social pressure from the medical community is to remain mum about contentions about the physiological aspect of this disease till a million double blind studies show that every last one of us is pure-as-the-driven-snow psychiatrically (frankly, I am slowly deteriorating, I worry, psychiatrically, given what the doctors are NOT doing in public for us!), then we have to provide a countervailing social force for them. By making it difficult for them to continue in this, and ironically, also make it easier for them to speak out.

The AIDS people are a perfect example of this.

What they did was to force the docs out of THEIR closet  and make it easier for them to be radical to the larger society in general and the medical community in particular. By making it harder for them not to be so conservative, as they were at the beginning. I remember quite well.

We must do the same.

I see in my head the interaction between Larry Kramer, a well- known, well-spoken, and outspoken AIDs activist in the U.S. and Anthony Fauci, the physician who heads the agency at the NIH that oversees AIDS and I believe also CFS/CFIDS/ME, but is a talking head on TV when AIDS stuff is breaking news.

Larry, in his overalls and Fauci, impeccably groomed and dressed to the nines, interacting on a television discussion program. It is clear from Fauci's words and facial expressions that he has clearly grown to respect Kramer; and Kramer, Fauci.

But it was Kramer and people in his camp that pushed the likes of Fauci way beyond where they were, early on, or where they were inclined to go.

Kramer and Company created a social force in opposition to the conservative "pushings" endemic to the social organization of Western medicine. And, to some impressive extent, it worked. Which is why we have to take a page from their book.

So, if our conservative docs, who seem to be either opportunistic about their careers or just ignorant about the social embeddedness of ALL medicine, not just PWC medicine (from shaman medicine to "advanced" Western medicine)  are going to be so ignoring of us, then we and our advocacy organization have to make it mighty difficult for them.

The problem is, as always, that PWCs, unlike PWAs, don't have a particularly healthy loyal cohort. Gay HIV-infected men did, in the healthy gay community. For PWCs, all that unites us is our illness. We are not a subset of a healthy community.

I write this article from bed on a laptop. Were I to have to transfer it to my desktop, print it out, and fax it to some official, there are many days when doing that would simply be too much. And that is typical of many PWCs.

This is one reason why the healthy people who work for the CAA and other advocacy organizations, and PWCs who are healthy enough need to redouble their efforts to create the social forces (call it "pressure") on our doctors to speak out, synthesize, and speak out more. They have got to learn to see this as part of what will heal us, and that if they view themselves in the business of healing PWCs, not speaking about the amassing research findings in our disease is in a real sense an abandonment of their medical responsibility to us.

It is their job to synthesize established research findings that will put our illness on the map of medical respectability, and they are mostly failing to do this. Instead they are being incredibly self-protective,  possibly careeristically opportunistic, and conservative, and caring for themselves and not for the cause and needs of the CFS/CFIDS/ME population.

It seems flabby and lax of them not to be speaking out and asking questions IN PUBLIC as to whether, for example, is it a genetic anomaly in an enzyme like the one Suhaldonik has found that is deficient in PWCs? And, if so, why didn't we become sick at the time of earlier bouts of the flu? Why don't they talk out loud about the fact that this then might suggest either the presence of a co-factor, or some kind of cumulative weakening of the system of the body that produces that enzyme so that we reach a point where after just one too many cases of viruses, if we have a genetic predisposition to have it (the enzyme) "fail," it does, and we get ill with what is diagnosed as CFS/CFIDS/ME. Or is it one or several toxins and/or bacteria and/or viruses that knock out whatever produces that enzyme?

Those are only a few of probably many more possible explanatory "bridges" that need further exploration. But for which there is respectable research that overlaps with other respectable research. And overlapping research conclusions, these kind of coming togethers of similar "truths" represents a stage in science that is very exciting because it often is the beginning of getting down to the heart of the matter.

I am suggesting strongly that physicians at certain stages of the research into an ill-defined and ill-respected illness have a social function that can be viewed as being as important as their clinical and/or research functions.

As a longtime PWC, who, like others, has seen her career go completely down the drain, the chance of finishing the research on her dissertation become nil, the fear of ending up either homeless or in some rickety, depressing nursing home as she ages and faces the inevitable increased physical deterioration that any chronic illness invites, this failure of our doctors to speak out and get us the needed respect and attention of the medical and governmental powers is utterly depressing and deeply upsetting.

We have our work cut out for us if the docs won't include that within their purview of their medical responsibility and our advocacy organizations cave in to their desires. Another job sick people don't' need to have to take on, but what else can we do but just sit by and let it happen to us, as victims.

(1) While the author has learned lots about the field of medicine from being a patient she taught psycho-social medicine in a hospital residency training program before getting sick. She was also finishing her doctoral degree in the sociology of medicine. It is because of her work in that field that the above analysis, which relies on sociological concepts like "social forces," "belief systems," and the embeddedness of medicine in social system, was developed. Years of illness has reinforced what she learned in school and has given her a framework, sometimes, for bearing the slings and arrows dealt by it to PWCs.

(2) Dear Elaine Showalter joined this crowd, as we all well know. See, for example, the following websites for an analysis of her outrage that we dared called her number. (http://members.aol.com/cfsinfo1/allure.html and the same but a more elaborated discussion at the same url with one exception: substitute "psallure" for "allure."

(3) What is SO interesting about this is that in pure science the lack of full explanation is actually what goads scientists to more investigation rather than, as in medical "science," it relegates the very same sort of problem to the ignominy of things like somatiform, and thus the territory of the psychiatrist (an interesting and very destructive distinction between the character of science and that of medicine, on which I could say more but won't here.