In the Princess Bride, Miracle Max says, "Your friend here is mostly dead....Mostly dead is slightly alive." And so we are. I have diagnoses of Myalgic Encephalomyelitis (M.E.) and CFS. I have immune dysfunctions and persistent viruses: HHV-6A, EBV, CMV, and Coxsackie. HHV-6 and CMV are in my spinal fluid. I've had abnormal SPECT scans and VO2 MAX scores. I am an Ampligen responder. One million Americans suffer in silence from my disease, undiagnosed, untreated, alone. Slightly Alive.
The whole point of this blog is that NIH and CDC behave as if we knew nothing about ME. That is not true. It is not so mysterious. You do not have to start from scratch as you slowly turn to investigate it again. Bethesda and Atlanta may have been asleep, but the research community was awake.
What is ME?
ME stands for Myalgic Encephalomyelitis - technically, encephalitis, meningitis, and muscle pain; more generally, a neurological disease characterized by significant immune abnormalities. The original name was atypical polio, coined in 1934 to explain an outbreak at Los Angeles County Hospital. In the 1950s, the UK and British Commonwealth nations switched to Myalgic Encephalomyelitis. At the same time, however, US researchers started using “epidemic neuromyesthenia,” a name that never caught on in the US. ME was coded by the World Health Organization under neurological disorders in 1969 and has remained there since; epidemic neuromyesthenia is also coded under neurology.
It is a serious, multi-systemic disease. To see what this disease is like, try these two sites:
For three decades, if you asked the US government what this disease was like, you would have received a very different answer.
In the mid-1980s, a series of cluster outbreaks in the US brought the federal government’s attention to the disease. Many of these were linked to an outbreak of Epstein-Barr Virus (EBV), or mono (also called glandular fever), so at first NIH began calling it “Chronic Epstein-Barr Virus.” However, by 1986 the US government’s “expert” on CEBV, the late Stephen Straus at NIAID (National Institute for Allergies and Infectious Disease) had concluded it was not related to EBV (a decision that has since come into question). In 1986 Straus began using the name Chronic Fatigue Syndrome as a substitute for CEBV.
In 1988, a committee convened by CDC accepted Straus’s choice, Chronic Fatigue Syndrome, or CFS -“chronic” as in chronic complainer, “fatigue” as in “Yeah, I’ve been feeling tired lately, too,” and “syndrome” as in syndrome of the month. They could not have come up with a more dismissive name if they had held a focus group. The name went with a vacuous definition that emphasized the single symptom “fatigue,” which is common among many serious diseases. In a society where everyone feels a bit overworked, the name sounded silly and so then did the disease. CDC portrayed it as a disease of upper middle class white women trying to have it all, who could not handle the stress of their ambitious lifestyles. For decades the only solutions offered were psychiatric therapy, exercise, SSRIs, and sleep aids.
Had the US government paid attention to experts in Canada and the UK, they might have simply adopted the name in use, ME. If you go to the decision-tree, to the point where CDC broke off and adopted CFS instead, along with what is called a “garbage” diagnosis (the disease was diagnosed by what it was not), it is clear that the next thirty years were disastrous for the patient population.
What was the result of this detour into the concept “CFS”? Nearly 30 years later, even CDC admits that at most only 15% of patients have a diagnosis. That means 850,000 adult Americans - and untold teenagers and younger students - have this disease and have no idea what is wrong with them.
And of the 150,000 who are diagnosed, the vast majority are white, have a higher-than-average education and (before their illness), a higher-than-average income. The illness leads to impoverishment for most patients. And for most patients, it is a life-long sentence.
A recent study has confirmed the results of other studies in finding that one-fourth of patients are bedridden and/or housebound. Only one in five can work either part-time or full time, which is why this disease experience is also a descent into severe poverty for most patients.
WHERE ARE THE 850,000 AMERICANS WHO HAVE NO DIAGNOSIS? Hint: They are most likely to be people of color, and they are more likely not to have started out with much money in the first place. Where are they, and where are their children? Some are lucky: they have extended families who care for them. But many are alone and for those who started out in poverty, I do not want to think what has happened to them. This is a criminal dereliction of duty on the part of CDC!
So for three decades, hundreds of thousands of Americans have fallen ill with this invisible disease, a life sentence in most cases, rendered unable to earn a living, and if they do not live in a family that can care for them, are reduced to severe poverty - if they didn’t start out in poverty to begin with.
In the meantime, the name and vacuous concept of “chronic fatigue syndrome” was a gift to a small group of British psychiatrists who fall into the school of “biopsychosocial” medicine. They adopted a definition different from that in the US - their definition, called Oxford, required only six months of debilitating fatigue, and did not distinguish between CFS and major depression or anxiety. They pushed the view that the disease was caused by “false illness beliefs” (mainly in women or young people of both genders), and could be cured with cognitive behavior therapy (to teach the patient she wasn’t really sick) and graded exercise therapy to get them back into shape, and voilà, everything would be okay.
Patients forced into CBT/GET (as the combination was called) were made much worse, in a very dark period of British medicine. The leading lights of these theories, Simon Wessely, Peter White, Michael Sharpe, and Trudy Chalder continue to pump out articles reaffirming their own work, never referencing that of researchers who have found biomedical abnormalities in patients with this disease. The most disastrous study to come out of this school of thought is the PACE study, funded by $8 million from the British government, purporting to “prove” that CBT/GET was the best choice for treatment.
The PACE study has so many problems I cannot possibly explain them all here, except to say I would have flunked a first-year statistics student who defied so many rules of statistics to come up with the solution they wanted. There is currently an effort by scientists and some patients to have the anonymized data from the study released so the results can be either confirmed or dismissed, but so far the relevant institutions, headed by QMUL, have refused to release the data - insisting that nobody really wants it for scientific reasons, but that there is an “orchestrated campaign” to harass the principle investigators. For the story of the PACE trial, read this article by David Tuller, of the school of journalism and health policy at the University of California, Berkeley (in three installments):
As a scholar, for me the most egregious error in the "biopsychosocial" studies like PACE is the absence of references to the growing body of literature on biomedical abnormalities in patients with the disease. For a recent bibliography, see:
The proponents of this viewpoint have had a great influence on how CDC and NIH have shaped their views of the disease. Somewhat ironically, the disease has never been studied at NIMH (the National Institute for Mental Health at NIH). Rather, for the first 12 years it was within NIAID at NIH and in the division of viruses and exanthums at CDC. So we had the strange picture of researchers who were not trained in psychiatry insisting that this disease was primarily psychiatric in nature.
Let us return to that point in time, where the wrong choice was made to go off into studying the disease as if “fatigue” were the identifying factor (it is not). Let us return to that poor choice and fix it: use the name they should have used in the first place, Myalgic Encephalomyelitis, ME. What are we talking about?
(The US HHS and NIH use ME/CFS as a compromise; CDC continues to use CFS.)
ME is a very serious disease. Both the Institute of Medicine (commissioned by the Department of Health and Human Services, or HHS) and an initiative called “Pathways to Prevention” at NIH, produced reports last year stating strongly that the disease is in no way psychiatric.
According to the CFS Advisory Committee (CFSAC) to the Secretary of Health and Human Services, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as defined by the Institute of Medicine is "an acquired, chronic multi-systemic disease characterized by significant relapse after physical, cognitive, or emotional exertion of any sort. The disease includes immune, neurological and cognitive impairment, sleep abnormalities, and autonomic dysfunction, resulting in significant functional impairment accompanied by a pathological level of fatigue. The cause of the disease remains unknown, although in many cases symptoms may have been triggered by an infection or other prodromal event. There are no approved diagnostics tests or treatments.”
NIH is going to study 40 select patients “to begin to understand the clinical and biological characteristics of ME/CFS.”
While I am pleased to see both CDC and NIH improve their perspectives on the disease, the fact of the matter is while they were sleeping for 30 years, other research was being conducted into the etiology and the biomedical parameters of this disease.
NIH: THERE IS NO NEED TO REINVENT THE WHEEL.
Why not begin with research that has been under way the entire 30 years that researchers were funded by patients, because there was virtually no funding available from the federal government?
What we need is for the US (and UK) governments to start with the existing research in the field. Here is a quick list of how to get started:
Invest in ME, an organization in the UK devoted to research on ME that runs an amazing international conference every year - a cornucopia of international information:
But it IS a start. No need to reinvent the wheel. NIH - start from the existing state of the research, not from where NIH/CDC has been for the past thirty years. And please, £6 million/year is not enough for these research institutes. We need parity in research funding comparable to other disease in severity and prevalence. $500 million is about the right number. And we are still waiting for the promised RFAs.