With Significant Advances But Little Money, Chronic Fatigue Syndrome Research Tries Crowdfunding

New findings are encouraging in the fight against chronic fatigue syndrome. But the government still provides funding so minimal, one researcher is turning to crowdfunding.

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At a conference last week in San Francisco devoted to myalgic encephalomyelitis — the devastating illness more commonly and misleadingly called chronic fatigue syndrome — it was immediately clear that researchers from leading medical centers in the U.S. and abroad have been making tremendous strides in documenting immunological, neurological, cardiovascular, and other types of dysfunctions among patients. It was also clear that little of this compelling research is being funded by the U.S. government — so much so that one researcher recently launched a video crowdfunding campaign.

Some of the emerging research has yet to be published in peer-reviewed journals, but the persuasive data provided strong support for the argument that the illness is a serious inflammatory condition triggered by infection or other physiologic insults; that it is as debilitating as other major chronic diseases, and often more so; and that patients accused of having a psychosomatic or psychiatric disorder have been seriously mistreated by the medical establishment.

“I was thrilled to see so much good science,” said Leonard Jason, a psychologist from DePaul University in Chicago and a longtime researcher into ME/CFS, as the disease is usually called these days. “That’s such a sea change. There was such a wealth of research that every session you went to you saw abnormalities being pointed out in different domains. It was breathtaking.”

At a pre-conference gathering at Stanford the day before the four-day meeting in San Francisco, scientists from the university reported that levels of 13 chemical messengers of the immune system known to increase inflammation, called cytokines, paralleled disease severity in almost 200 people with ME/CFS. In a study of a small group of patients, daily levels of a cytokine called leptin rose and fell over 25 days in accordance with subjects’ self-assessment of whether they were experiencing more or fewer symptoms.

Researchers at the Stanford and San Francsico meetings also reported that ME/CFS patients exhibit strikingly different EEG patterns than those of healthy controls, perform poorly on cardiopulmonary exercise tests (especially when they undergo the testing two days in a row), frequently suffer from co-morbid conditions such as fibromyalgia, are more likely to get sick if one or more family members also has ME/CFS or a related disorder, and experience pronounced abnormalities in many physiologic functions.

Dr. Jose Montoya, an infectious disease expert and the leader of the Stanford research effort, said the increased understanding of ME/CFS as an inflammatory illness would generate new approaches for treatment, even in the absence of a precise understanding of the triggering events.

“Why couldn’t we treat these patients with the same approach for other inflammatory diseases, for which we don’t know the trigger?” said Dr. Montoya, who hopes to organize a clinical trial with anti-inflammatory drugs to test the hypothesis. “For lupus, for rheumatoid arthritis, we don’t know the trigger — just that symptoms get significantly better when the inflammation is treated.”

Dr. Montoya became interested in the field a decade or so ago, when a few patients with the illness were referred to him. Colleagues warned him at the time that focusing on the issue would be harmful to his career, but he persisted in order to find ways to help his patients, he said.

(Disclosure: Dr. Montoya invited me to participate in a panel on media coverage of ME/CFS that took place at the Stanford gathering the day before the conference.)

About a million Americans are believed to suffer from ME/CFS, although estimates range depending on how the illness is defined and diagnosed. Besides profound exhaustion, cardinal symptoms include post-exertional relapse or malaise (the inability to recover after even modest energy expenditures), cognitive problems often referred to by patients as “brain fog,” and sleep disturbances. But the lack of an agreed-upon causal agent and of an accepted biomarker for diagnosis has contributed to the widespread misunderstanding that it is a psychosomatic or psychiatric disorder — a problem exacerbated by the trivializing name the illness was given when outbreaks appeared in the U.S. in the 1980s.

The last gathering of the International Association for CFS/ME, the main scientific organization for the illness, took place in September 2011, at the end of a two-year period during which scientists pursued evidence that the illness was related to a class of retroviruses that originated in mice. That lead did not pan out, but the drawn-out debate helped to trigger a wave of renewed interest and research into the disorder.



Since then, top researchers have been testing samples from a cohort of 200 well-defined ME/CFS patients, culled from the clinical practices of some of the leading clinicians treating the illness, along with well-matched controls. The repository of samples provides an excellent resource for further investigation into the promising leads uncovered by the ongoing research, the scientists have said.

But last week’s conference, which was attended by many people with the illness, highlighted what advocates and researchers perceive to be the government’s long-standing neglect of the illness. Much of the research presented was not funded by the National Institutes of Health or other government agencies but relied instead upon the largesse of private donors with sick family members or other reasons to support research into ME/CFS.

Even Dr. Ian Lipkin, a renowned Columbia infectious disease expert, has had trouble getting NIH funding for ME/CFS research. In 2010, Dr. Lipkin was recruited by the NIH to lead an investigation into the suspected mouse retroviruses. His study found that no link existed and theorized that the earlier findings, which suggested an ME/CFS connection, were the result of laboratory contamination.

Following that study, he continued seeking possible infectious triggers for the illness with funds from the Hutchins Family Foundation and has recently launched a video crowdfunding campaign to raise an additional $1 million or more. In the unusual public appeal, which he posted on the site of his Center for Infection and Immunity at Columbia, he noted that “we are off to an excellent start but the resources are insufficient to do what needs to be done, to do what the community deserves.”

Dr. Lipkin said he decided to turn to the public for help because he felt committed to finding answers. “I haven’t tried this before, and I don’t know of anybody else who has either,” Lipkin said in a phone interview after the conference. “But there has to be some way to get this done. There is no NIH funding to support this at present.””

The NIH spends about $5 million a year on the illness, far less than on some diseases that afflict fewer people but have greater visibility and respectability, and perhaps a famous spokes-patient. The Department of Health and Human Services Department has also commissioned a $1 million report from the Institute of Medicine, a well-respected organization that often advises the government on thorny issues. The IOM is supposed to develop updated diagnostic criteria for the illness.

But patients and scientists have said that the effort is a waste of funds that would be better spent on more research into causes and treatments, especially since top researchers already agree on a basic set of diagnostic criteria. They are also angry because most of the panel members have no expertise in the illness.

Nonetheless, many of those present at last week’s meetings were buoyed by the sense that research progress was finally being made, if not into the definitive causes of the illness then at least into some of its physiological parameters. But that silver lining comes with a giant dark cloud, said Michael Allen, 65, a retired psychologist in San Francisco who has been sick with ME/CFS since the early 1990s.

The researchers are generating strong leads for further research, Allen said, but the government is failing to pursue them aggressively.

“It’s clear there’s nowhere near enough money yet to follow all the leads,” he said. “And the problem in the field is that people have been generating leads for years, but the money isn’t there for the follow-up research. So I’m not assured that there will be any real treatment for the disease while I’m still alive.”

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