CFSAC testimony: CDC must end use of toolkit and the Reeves "empirical" definition

Testimony to the Chronic Fatigue Syndrome Advisory Committee of the
U.S. Dept. of Health and Human Services
Wednesday-Thursday June 13-14, 2012
Mary M. Schweitzer, Ph.D.

Thank you for allowing me time to speak.

I’d like to express my admiration for the young people who testified today – I know how hard it was for them, and they did a great service. Thank you.

When you talk about educating people – whether teachers or physicians or the public in general – it comes down to the CDC’s website on CFS. Despite the changes you have made, that website remains both wrong and dangerous to patients.

CDC’s website on CFS continues to promote one particular viewpoint on CFS – that the disease can somehow be managed with cognitive behavior therapy and graded exercise. I was glad to hear the toolkit and brochures are going to be retired – but they should be burnt. That should be shut down NOW. Continuing the effective promotion of what is in there is simply wrong, and it harms patients in the real world – now. Why on earth are they still around?

The reference to cognitive behavior therapy signals the reader that the disease is really a somaticizing disorder – psychiatric, to be solved with psychiatric methods. Cognitive behavior therapy, or CBT, is very different from the pacing, or “envelope theory”, that most of us are taught to prevent the dangerous push-crash cycles we suffer. Saying that CFS can be fixed with CBT implies what British psychiatrists say out in the open – we appear to be sick because we are deconditioned; we are deconditioned because we have inappropriate beliefs about illness and CBT is necessary to teach us we really aren’t sick any more. That’s when the second half of the equation comes in – Graded Exercise, with the combination often called CBT/GET.

While the emphasis on CBT is misleading and a nuisance, promoting graded exercise therapy is downright dangerous. Researchers in the past few years have shown that patients with this disease do not operate normally in aerobic metabolism. We do not utilize oxygen in our cells as normal people do, and we do not expel carbon dioxide as normal people do. Without an understanding of this mechanism, graded exercise is dangerous.

Other research articles suggest that there are significant cardiac abnormalities in groups of patients with “CFS” (Fukuda 1994). Again, without understanding how this works, or how badly the patient is affected by it, graded exercise is dangerous.

Finally, studies conducted by patient organizations in the UK have consistently demonstrated that Graded Exercise harms more patients than it helps. If it were a drug – with more patients suffering adverse events than experiencing improvement - it would never get past FDA.

But – the CDC recommends graded exercise – on its website, and in the published material that is sent to anyone asking for information. This is not okay. End it NOW.

And please, end your relationship with British psychiatrists who work for insurance companies.

In fact, the only hard link to an institution outside the CDC remains in the section recommending graded exercise. It links to Dr. Peter White’s psychiatric CFS clinic at St. Bartholomew’s Hospital in London. White is chief medical officer of two insurance companies: Scottish Provident and Swiss RE.

What does Dr. White think of CFS? This is from an article published last month in the British Medical journal: "The requirement that conditions should be classified … either mental or physical … causes particular difficulty in the context of the functional somatic syndromes or somatoform disorders, in which physical symptoms are often assumed to have a psychological explanation. […] For example, chronic fatigue syndrome may be classified as myalgic encephalomyelitis (ME) within the neurology chapter (G93.3) of ICD-10, or as neurasthenia, a psychiatric disorder (F 48.0)."

Really? Does CDC believe that? CFS is a somatoform disorder? It may be classified as neurasthenia?

While CDC helpfully links us to Dr. White’s website, there are no links to American researchers or clinicians. None, zero, zippo, zilch. Why?

The most obvious reason – and another major critique I have of CDC’s website – is that the only research on that website is their own, often in conjunction with Emory University. For years the research was about childhood traumas somehow causing CFS. I see they have branched out to include cytokines – but I see no references to the researchers who have worked on the relationships between cytokine abnormalities and CFS for twenty years. If you go to the website, it looks as if CDC discovered it all by themselves.

We need CDC to give a balanced perspective on information about this disease. We need professional summaries of research in different disciplines – not the tiny little slices of the research pie that CDC allows us to see. And they should make use of the researchers and clinicians who have represented us on CFSAC (and the CFSCC) for almost twenty years. Why not?

Dr. Unger replied that they didn’t have to have a balanced bibliography or depiction of the disease because that is not what their website is for. It was just for saying what they were doing, period.

However, recently I heard from two different friends that there are new PSAs on the radio for “CFS”. Now, normally I would have been pleased with this. But at the end of the PSA, the listener is referred to … the CDC– to its website and/or the old toolkit for professionals and/or the new brochure, all of which remain woefully inaccurate.

It matters that CDC has deep biases in what it places on its website, and in its publications. Outsiders go to the CDC website and learn that we need cognitive behavior therapy and graded exercise – which does not in any way reflect the approach of American experts on the subject.

When I heard CDC’s testimony today, I had to wonder – where do I fit? Where do people like me fit? I have a diagnosis of Myalgic Encephalomyelitis and fit both the Ramsay and WHO definitions, as well as the 2011 International Definition (Carruthers et al, Journal of Internal Medicine). I have immune defects and am beset by viruses, some of which are in my spinal fluid. If you could not find anybody with viruses, then your subset was not patients like me. Why? Where do I belong then? What was wrong with your collection process that people like me were missing? Or if we were not missing, what was wrong with the way you did the research that we didn’t show up? Why are you hiding us? Why do you say this disease is such a mystery when it is not; that there are no treatments when there are?

Why isn’t there an MEAC - Myalgic Encephalomyelitis Advisory Committee?

There are at least one million Americans, of every class and ethnicity, with this disease. There have been cluster outbreaks in the past and there will be cluster outbreaks in the future.

This disease ruins whole lives. Children get it. Teenagers get it. It ruins families. Yet both CDC and NIH continue to spend virtually nothing on this disease. This has been going on thirty years – more than a generation. When will it end? How long do you think you can keep it a secret?

Postscript on definitios:

The Fukuda definition (1994) was only intended to be temporary until subsets of patients had been identified using biomarkers. If you actually READ the article itself, you will see that. CDC has done nothing in this regard. 18 years. Nothing.

The Reeves definition, sometimes misleading called “empirical,” is without any basis at all. In the lone article where he used his questionnaires on a set of 58 Kansas patients who had been diagnosed with CFS using Fukuda, he could only come up with SIX who met his definition. I would hardly call that a ringing endorsement. It should be dumped.

The Canadian definition of 2003 was created by a committee of seasoned clinicians after Canada adopted its own version of ICD-10 and placed both CFS and M.E. in the same category. It is intended for clinical use, but it has already been useful in research. If nothing else, use this definition.

Dr. Reeves always said there would be no references to different names or definitions until the community of scientists came up with one. Well – they have. Last summer a group of researchers and clinicians led by Bruce Carruthers published an article in the Journal of Internal Medicine, defining Myalgic Encepalomyelitis and offering a way to diagnose it. (I should note that Melvin Ramsay had a textbook describing M.E. in the 1980s – this has been ignored by CDC.) The new M.E. definition makes post-exertional exacerbation of symptoms – which can be measured objectively – the center of the disorder – not chronic fatigue.

This is what we need = acceptance of the diagnosis of Myalgic Encephalomyelitis with a scientific definition. For those diagnosed with chronic fatigue syndrome who do not meet the criteria for Myalgic Encephalomyelitis, I would recommend the Canadian definition – and if they don’t meet that, find out what they really have. And treat them.

CFS was a misstep. When the cluster outbreaks occurred around the United States in the 1980s, American clinicians did not know about M.E. because it was not used in the United States – epidemic neuromyesthenia had been used to mean the same thing, but there had been little about it after the 1970s.

Had those cluster outbreaks occurred in Surray, England, instead of lake Tahoe, or Lyndonville NY, or Rockville Maryland, or Hollywood, or Cherry Hill NJ – the patients would have been diagnosed with M.E. We would be much further along (I would hope) on diagnosing and treating patients.

Instead, CDC and NIH (represented by the late Stephen Straus) went its own way, adopting a made-up name for a disease that already had a name, a definition, and research. We have been set back 30 years by this misstep.

Time to go back to the name in place before that misstep – M.E. – time to accept that there already exist formal definitions for the disease, and time to quit saying its so mysterious, because it is not. Thank you.

My letter to APA on Somatic Symptom Disorder

Submission to the Work Group for Somatic Symptom Disorders

The new category of Somatic Symptom Disorder, or SSD, bears a remarkable resemblance to the CDC's Holmes (1988) and Fukuda (1994) definitions of the disease Chronic Fatigue Syndrome (CFS). The requirement that patients experience six months of debilitating fatigue is taken straight from CDC's definitions. This development is disturbing for three reasons:

1. For two decades, British psychiatrists Michael Sharpe, Peter White, and Simon Wessely - all proponents of the ideology-driven "biopsychosocial" school of medicine - have ignored the CDC's definition for one of their own (Oxford), which omits the physical symptoms required of the CDC diagnoses, and includes concurrent major mood disorders (exclusionary in Holmes and Fukuda). They have long insisted that "CFS" is really a modern version of "neurasthenia", which was removed from DSM a generation ago but is still diagnosed in the UK.

2. Earlier efforts to portray CFS as a somaticizing illness were foiled by requirements in the definition of somaticizing, such as the length of the illness (decades) and the absence of any gain. It strikes one as somewhat disingenuous to deliberately replace that category with another that can then be used to portray as psychological, a disease described as biomedical by the Chronic Fatigue Syndrome Advisory Committee of DHHS.

3. The APA has stated elsewhere that many of the changes in DSM-5 are intended to avoid gender biases in existing medical categories. Isn't it strange that the proponents of the new category SSD have often stated 90 percent of victims of CFS (and SSD by extension) are female? Or that the proponents of renaming the disease "neurasthenia" are also proponents of "SSD"?

At the end of the 1980s, when CDC adopted the name "chronic fatigue syndrome" for a series of outbreaks of a mysterious, debilitating illness, Simon Wessely resurrected the diagnosis of "neurasthenia" [aka "the vapors"] for CFS patients in England. Although it is a direct violation of ICD-10, British psychiatric manuals classify CFS under neurasthenia, but could not do so in the U.S. because the diagnosis "neurasthenia" was removed from DSM a generation ago for gender bias.

In choosing the term neurasthenia, Wessely referenced not Freud but a New York physician named Beard who coined the term "neurasthenia" in 1869. Beard's book, "American Nervousness", is well-known among women's studies professors for advancing the theory that girls who were allowed to study science and math in high school would end up with either a shriveled uterus (his version of "hysteria"), or struggle with a life-long "nervous condition" (neurasthenia). Beard openly wondered whether allowing girls to attend high school would result in the death of the "American race": The "Celtic race" (Irish immigrants) did not permit their daughters a secondary education, and they enjoyed large families as opposed to the smaller numbers of children born to the middle class of the "American race".

I have to say I never thought I would see that book cited as a reputable source by a contemporary scholar, but both Wessely and the late Stephen Straus of NIH used it frequently.

Adoption of SSD will allow this bizarre nineteenth century view of the way women's bodies work to return to DSM, albeit under a more modern name.

In England, the insistence that CFS is really neurasthenia has led to cruel results, with women thrown into mental hospitals against their will. CBT (to cure the patient of her "inappropriate illness beliefs") and GET (to get her back into shape after she has allowed herself to become deconditioned) are the only treatments recommended by British public health.

The result is that patients with the most severe cases of this disease are forced into hiding, bereft of all medical care whatsoever.

Adults in the U.S. have, in general, not been subjected to that level of cruelty - although the vast majority of doctors in the U.S. are ignorant of the large body of literature on the biomedical symptoms and causes of CFS and when they don’t actually harm their patients, they can’t help them. Too often they assume the problem is stress; too often they write a prescription for Prozac and send the patient away.

However, more vulnerable victims of CFS - teenagers - have been subject to removal from their homes and sent to foster care for the sin of having a poorly understood illness. Laypersons in school boards or child protective services have felt competent to diagnose Munchausen’s Syndrome By Proxy (or its more recent incarnation, Factitious Illness by Proxy) after hearing a lecture or reading an article on the subject. The more the parents fight the diagnosis, the more its proponents can claim it is true.

The phenomenon is reminiscent of the belief that autism is caused by "cold mother syndrome", or multiple sclerosis really "hysterical paralysis".

It is particularly ironic to see such a push towards psychologizing a physical disorder at the very moment evidence points to new, serious causes.

Several private research initiatives in the U.S. are using systems analysis to pull together evidence about immune defects and active viruses (both opportunistic and reactivated) found in the patient population.

At this point I must admit that I have a personal interest in this issue. I have been fortunate. My university connections have allowed me to participate in cutting edge studies. Let me share with you what scientists have learned about CFS, using myself as the case study.

I have the 37kDa Rnase-L defect, my natural killer cell function is 2%, and I have an abnormal cytokine pattern.

Perhaps that is why I suffer from recurring bouts of EBV, and have chronically activated cytomegalovirus (CMV), HHV-6 (Variant A), HHV-7, and three strains of Coxsackie B. HHV-6A and CMV (both known to cause encephalitis) were found to be active in my spinal fluid in a spinal tap in 2009, along with the presence there of the 37kDa Rnase-L. That doesn't sound very psychogenic to me.

I have been sick since suffering a blackout in my office in 1994. When in relapse, I have ataxia, expressive aphasia, expressive dysphasia, short-term memory loss, disorientation, and profound confusion (I once poured a cup of coffee into a silverware drawer convinced it was a cup). I suffer from constant severe pain behind my eyes, in the back of my neck, and in the large muscles of my thighs and upper arms. Even one flight of stairs is very difficult for me right now. At my worst, I could not walk ten paces, nor could I even brush my own teeth. I used to be an avid skier, but the disease put me in a wheelchair. I have a Ph.D. in history from Johns Hopkins, but I could not read.

I have abnormal SPECT scans and my VO2 MAX score (or CPET) is so low, I would be granted long term disability by that measure alone. I could not even pass a simple Romberg test.

I have been helped greatly by a Phase III immune modulator, only to relapse when permission from FDA to have the drug was removed. I am back on it now, and I am improving again, despite the 100-mile commute by rail from my home in Delaware to New York City. That is why some of the symptoms mentioned above are in the past tense. Without the immune drug, within months I relapse back into a severe state of invalidism.

If you believe that significantly abnormal immune biomarkers, Coxsackie B, and herpes viruses known to cause encephalitis, meningitis, myocarditis, and other serious diseases when active over a long period of time - if you believe all of this can be resolved using talking therapy and SSRIs, then proceed with your new category.

Neither could help me in the past - only pharmacological intervention directed at the viruses and immune defects has improved my condition.

How many biomarkers and viruses must a patient have to be taken seriously? If one is in constant pain, does it not make sense to worry about pain? If one suffers from a significantly debilitating illness, does it not make sense to be concerned about the state of your health?

This new category would place those sensible concerns in the realm of abnormal anxiety dysfunction. Patients would be denied access to the tests - and treatments - I have been fortunate to be able to have.

I can’t see how that would benefit patients – but it certainly would help out insurance companies.

According to the CDC, at most, 15% of the 1 million adult patients with CFS in the U.S. even have a diagnosis. Of those 150,000, only a handful have had access to the care, testing, and treatment I have.

It is a Dickensian world, where the victims of this disease are relegated to extreme poverty, no matter what their profession prior to the illness.

Who, then, would benefit from creating a psychological category for this very biophysical disease? Does psychiatry want to be the handmaiden for the insurance industry? Does psychiatry want to become the default option for "I just don't know"?

These are the questions that the profession needs to answer before proceeding with plans for SSD.

[Note to readers: To read about the proposed psychiatric category of SSD for DSM-5, go to the following website: Somatic Symptom Disorder (SSD). Instructions for comments are on the bottom of the page. We have only until June 15, 2012, to leave a comment.]

Mary M. Schweitzer, Ph.D.