By Erik Johnson and Lisa Petrison
Starting in the fall of 1984, an epidemic of a very weird illness emerged in the Lake Tahoe area of California and Nevada.
Hundreds of people were severely affected.
Marathon runners, overnight, could not climb a flight of stairs. People who set out in the morning for work had to be carried home. Those who could still drive got lost trying to find their way home. A math teacher could not do addition. An English teacher could not conjugate a sentence. Throats looked like people had gargled with battery acid. People could barely stand without leaning against something. Walking was more like lurching: aim for the door, and those with this illness only made it through fifty percent of the time. Those who closed their eyes dropped instantly. People suffered from malnutrition in the midst of a fully stocked kitchen because they couldn’t stand long enough or think well enough to prepare food. Reading was out of the question. TV caused seizures. Lights in the room burned people’s eyes. They were like soldiers coming out of a war zone. They lay comatose, but it wasn’t sleep. When they dragged themselves back into consciousness, it was in groggy, toxic, Twilight Zone fashion.
And they did not get better.
The illness met all the determinants of the classic outbreaks of Myalgic Encephalomyelitis that had previously been observed in Europe, but that was not known at the time. The closest illness that the doctors and researchers identified was a condition that had been described in the U.S. literature starting in about 1980, called Chronic Epstein Barr Virus (CEBV).
Over the next year and a half, a team of two local doctors based in Incline Village, Nevada, gained insight into the disease. They learned that patients had abnormal helper/suppressor T-cell ratios, low percentages of B-cells, and the presence of an unusual herpesvirus dubbed HBLV (now HHV6A). But the doctors, Paul Cheney and Dan Peterson, did not know what was causing the sickness and were unable to offer any treatments.
On June 11, 1986, Dr. James F. Jones of National Jewish Hospital in Denver gave a lecture at Lakeside Hospital in Incline Village, just across the street from the offices of the local doctors studying the epidemic. The hospital had been refusing to admit or treat patients with the “mystery disease,” but agreed to let Sierra Research Institute use the room because of the prestige of Dr. Jones, who was working with the government on the study of CEBV.
Since Dr. Jones was the acknowledged expert in CEBV, patients were eager to hear what he had to say. They hoped that he would be able to help them by providing treatment, either immediately or in the near future.
As the meeting was almost ready to begin, a stir went through the room. “Where are Dr. Cheney and Dr. Peterson? Something isn’t right. This is important, why wouldn’t they be here?”
Despite the objections that the meeting should wait, Dr. Jones began without them.
At the beginning of the talk, Dr. Jones gained sympathy by talking about bedridden patients and describing how life-destroying the illness can be. At that point, Dr. Cheney quietly joined the gathering, taking a seat in the back of the room.
However, as Dr. Jones continued on, some patients began to wonder whether his understanding of CEBV was relevant to the Tahoe epidemic. He didn’t seem to know about the physical and laboratory abnormalities that the two local doctors had been finding in their cohort, and he seemed unaware that some of the most severely affected Tahoe patients either did not have elevated EBV or were totally EBV negative.
Worse, Dr. Jones insisted to patients that the illness was their own fault. He lectured to them at length that the reason that their bodies were unable to keep the EBV under control was because of poor living choices, including bad diet, stress, drug and alcohol abuse, and cigarette usage.
The crowd reacted in stunned horror at his accusation and then erupted, everyone talking at once.
The patients’ worst fears were confirmed. Dr. Jones was no different than the other doctors who had denied they were sick or blamed them for their own problems. No wonder Dr. Peterson hadn’t come!
One patient, Erik Johnson, said loudly, “These people are athletes! Look, here is a marathon runner, a whole roomful of teachers, a tennis pro. You’re not talking about us. That’s not what’s causing this disease!”
Another patient exclaimed, “This is a bunch of horse s***!”
Six or eight patients spontaneously stood up and started to move toward the podium. The doctor, looking alarmed and on the verge of running away, took several steps toward the door.
Other patients and family members then stood up too, spontaneously working together to prevent anyone from stepping forward to argue with Dr. Jones. Some grabbed the patients’ arms from behind, while others formed barricades in front of them.
They said: “This will do no good. We can do nothing. Please stop. Don’t anger the doctor. Let science take its course.”
And the other patients responded: “Why not anger the doctor? He’s not listening. He’s not going to help. We have the evidence. We don’t have to take this.”
But eventually, all the patients sat down and were quiet again.
The doctor came back to the podium and began speaking again. Whereas at the beginning of the talk his tone had been meek and mild, now he was bold and brazen, like a puppy who had just chased a cat.
He chided the patients for their self-destructive habits and told them that if they didn’t change their lifestyles, they would remain ill.
“Be honest,” he said. “If each and every one of you look at yourselves, you will find things that you could have done better. You aren’t taking responsibility for your own illness.”
The following month, Dr. Jones, Dr. Cheney, Dr. Peterson and some of the Tahoe patients were featured in a special on the Tahoe epidemic on a national TV news program, “20/20.” The program can be seen toward the bottom of this post.
In February 1987, Stephen E. Straus of the National Institutes of Health (NIH) and James F. Jones published a paper on CEBV (which they referred to as “chronic neuroasthenia”) in the Annual Reviews of Medicine.
Dr. Jones and Dr. Straus also were both part of a team of CDC-led researchers led charged with the goal of writing a description of the Tahoe illness for future study. Neither Dr. Cheney nor Dr. Peterson was invited to participate.
In March 1988, the committee produced a ridiculous name (“The Chronic Fatigue Syndrome”) and a vague description that seemed to have little to do with the Tahoe epidemic. The trivialization of the illness led to the dismissal of the complaints of the Tahoe patients, and of the complaints of others with their same disease, by both the medical community and by society for decades to come.
More than 27 years later, it seems to us like history is repeating itself.
Once again, the government has decided to create a committee to develop a definition of this illness — an activity that will influence how the medical community and the media view the disease for many years to come.
Once again, the doctors who know the most about the disease are not being asked to participate in the defining of it.
And once again, the people who are being given the power to make decisions that impact patients’ futures seem to not be caring much about the evidence, not be taking the disease seriously, and not be very much concerned about the well-being of the patients who are ill and suffering.
Over and over again, we have seen that that for whatever mysterious reason, the government invariably ends up minimizing as much as possible not only M.E. but every other illness phenomenon related to it. This includes Lyme Disease (which the government insists is easy to find and easy to treat); Toxic Mold Illness (despite hundreds of papers showing that mycotoxins present in buildings have negative effects on humans, the government does not acknowledge that anyone should be concerned); Fibromyalgia (with antidepressants, anticonvulsants, exercise and cognitive behavioral therapy now suggested to be the solution despite very limited effectiveness); and Multiple Chemical Sensitivity (which the government either does not bother to discuss or dismisses as an imagined problem).
The most recent development was with regard to Gulf War illness, which has many similarities in terms of both symptoms and laboratory abnormalities to M.E. In January 2013, an Institute of Medicine committee renamed that disease “Chronic Multi-Symptom Illness” and recommended the following approach to its management:
“The committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms.
“Other interventions and approaches hold promise for treating CMI but lack robust scientific evidence of their effectiveness. For this reason, the VA should fund and conduct studies of interventions, such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing, and multimodal therapies.”
And now the government has stated that it plans to pay this same Institute of Medicine to create a new definition for ME/CFS.
Considering how much progress has been made in terms of the understanding of ME/CFS over the past five years or so, if this were an even slightly non-rigged system, the announcement of a development of a new definition would be a cause for celebration. It’s about time that the government looked at the 500+ papers demonstrating medical abnormalities and gave sufferers of this illness the recognition and respect they deserve.
But just as the mere presence of Stephen E. Straus (profiled at length in “Osler’s Web”) and James F. Jones on the committee to define the Tahoe illness was a clear warning sign that the outcome of the committee was likely going to be undesirable for ME patients, there are many clear warning signs that this redefinition has the potential of destroying all the progress that has been made with regard to establishing credibility for M.E. Included in this:
* IOM’s recently released report on the disease formerly known as Gulf War Illness.
* The general government history of repeatedly minimizing the severity of ME/CFS cases and suggesting that the disease is caused by psychological problems.
* The publicly stated opposition to the IOM effort by virtually all of the U.S. clinicians and researchers specializing in ME/CFS.
* The government’s disrespect in ignoring the recommendations of these experts.
* The secrecy with which the IOM has approached patients to ask for recommendations rather than making a public announcement.
* The high level of involvement of the CFIDS Association of America (which historically has done everything in its power to minimize the perceived seriousness of this illness) to get this contract pushed through. (For more details, read here, here, here and here.)
The most recent gambit from the CAA (first delivered by a patient who has served on their board and consistently defended their actions) seems to be an attempt to demoralize the patient community into submission. Basically, the new argument goes like this:
1. The contract is going forward. Things are moving fast. Your protests are not making any difference.
2. You have three options at this point: cooperate, fight or give up.
3. If you cooperate, probably it won’t work. The outcome still will likely be bad.
4. If you fight, it won’t make any difference. The contract is going forward regardless.
5. If you give up totally and pull the covers over your head, the outcome likely will be the same as if you tried to make a difference.
6. None of these options are good. But since there are no good options, the best option is to cooperate.
7. If other people decide not to cooperate, that’s their right. But regardless, they should cooperate with the cooperators.
Of all the problematic ways in which the CAA has acted toward patients throughout its history, this may be the most cynically manipulative move yet. Those “advocates” understand how much it costs people with this disease to attempt to act on their own behalf. They know how demoralized this community is after having its hopes of a cure ripped away from it. They know how hard it is for people who have lost so much of themselves to believe that anything that they might do could have a positive result.
But the underlying truth here is that both the government and the CAA care tremendously about the opinions of patients. If the patient community as well as specialist physicians remain firmly opposed to this, it will make it very difficult for them to move forward.
This is the reason that the CAA is putting so much effort into trying to manipulate patient opinions about the IOM study — because patient opinions matter. And that gives patients much more power than most of them realize.
The other truth here is that even if the IOM committee ends up going through (which, despite what the CAA says, is by no means a sure thing at this point), the best way for patients to influence what happens on that committee is to fight against it every step of the way.
If patients agree that IOM has the power and cooperate with their efforts, then the committee will be able to say that they took patient wishes into consideration — while at the same time doing whatever they please.
On the other hand, if patients continue to insist that the IOM is going to come up with an inappropriate definition and that we are going to be mad as hell about it when they do, IOM will be under much more pressure to include our experts on the committee and to not stray as far from the Canadian Consensus Criteria (CCC) in their recommendations.
And anyway, just because the CAA and their supporters say that something is true doesn’t mean it actually is true. Our experts have not abandoned their position opposing the hiring of IOM to create the definition. They have stood up for us. From both a practical standpoint and a moral standpoint, it would be wrong for us not to continue to stand up for them.
To sign a petition addressed to Secretary Sebelius asking that she cancel the contract signed with IOM and instead adopt the Canadian Consensus Criteria (CCC), please click here.
To sign a petition expressing appreciation and support to the 35 ME/CFS experts who signed the open letter to Secretary Sebelius asking that she adopt the CCC as the official definition of the illness, please click here.
To go to the Paradigm Change website, please click here.
Here is the 20/20 program from 1986:
Links on this page are in orange.