Trial By Error: “Talk is Cheap,” Patients Tell NIH

By David Tuller, DrPH

Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group€™s post about the meeting, the goal was to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. Specifically, #MEAction urged the agency to develop bold leadership for ME, disease-specific, multi-year Request for Application (RFAs) and investigator-initiated funding opportunities, and a strategic plan: comprehensive, fully-funded, cross-Institute and outcome-driven.

From #MEAction’s perspective, the outcome of the meeting left much to be desired. According to the group’s account, NIH leadership is not yet ready to significantly accelerate NIH€™s approach and commitment to ME because they feel the science is not ready, and that the field lacks the needed researchers and high-quality grant applications.

Ben HsuBorger, MEAction€™s campaigns director, followed up the meeting with a letter to Dr Collins expressing the group€™s disappointment. It was evident from our meeting,” he wrote, “that NIH lacks the urgency and commitment needed to deliver diagnostics and treatments to people with ME in time to save the millions of people whose lives and futures hang in the balance.

After the meeting, Dr. Collins himself tweeted the following, putting a more positive cast on what transpired:

#NIH continues its commitment to better understanding #MECFS in hopes of improving treatment for this debilitating disease. Yesterday, @NINDSdirector Walter Koroshetz and I spoke w/ @MEActNet to discuss the community€™s concerns, and to discuss the best path forward for research.

Since then, this tweet has drawn dozens of critical responses, many of them suggesting that Dr. Collins€™ commitment should be measured by investments in research, not by conversations with advocates. To be sure, the NIH has increased funding in recent years, both for internal as well as external research. One measure is the agency€™s disease category spending, based on grants, contracts, and other funding mechanisms used across the National Institutes of Health, which indicates that the amount spent has risen from $5 million in 2014 to $15 in 2017 and an estimated $16 million in 2018.

Yet those improved figures need to be examined in the light of historical context as well as prevalence rates. The NIH has itself acknowledged the deficiencies of its past efforts on this illness. Even compared to illnesses with far fewer estimated sufferers, spending on chronic fatigue syndrome (now generally referred to as ME/CFS by the government) has been scandalously low. While the recent increases are of course welcome, they do not remotely make up for past neglect nor are they sufficient to ensure the speedy progress needed to bring relief to patients.

Online critics were quick to unload. This comment, from Dutch advocate Lou Corsius, was perhaps typical: Dear sir, please show us your good intentions by funding research into the biomedical aspects of ME to a considerable larger extend.

Janet Dafoe, whose son Whitney is severely ill, tweeted this: Disingenuous spin. Increase funding! It’s not complicated.

From Michael Alenyikov, an author and psychologist who was diagnosed in the early 1990s: Best way forward is to commit $250 million to research. That€™ll get the attention of every ambitious researcher and researcher to be. And it just might get results before too many more lives are destroyed.

And (((shilla))) [twitter self-description is “physician-scientist; pwme; troller of nazis and their ilk; hella mad. BEWARE SNARK”] tweeted bluntly: WHERE IS THE $$$$$$$$$$$$$$.

And this from Beth Elaine Boal, who describes herself on twitter as a severe patient who “used to write poems, teach, run programs in Paris, parent, play violin and paddle”: This reads like the NIH version of ‘thoughts & prayers.’ It glosses over the paltry funding, the rampant discrimination, the 30 yrs of neglect, the dissolution of CFSAC, the mounting deaths & a government that has yet to act in good faith.

Other commenters expressed similar views in their own ways.

Besides that, a few challenged #MEAction’s right to speak for the patient community. Some pleaded with the NIH to adopt a 2011 case definition for myalgic encephalomyelitis called the International Consensus Criteria rather than other case definitions, including the one created by the U.S. Institute of Medicine (now the National Academy of Medicine).

Here€™s what ICC advocate Colleen Steckel tweeted: There is a disconnect between #NIH and the patients who fit the #MEICC. Diagnosis and treatment of #SEID [the new name given to the illness by the Institute of Medicine] does nothing to address the needs of #PwME. Understanding requires speaking to advocates who represent this patient population. Time to respond to #PwME4ICC petition. [A petition to U.S. health agencies to adopt the ICC has received more than 5,000 signatures so far.]

And from Jerrold Spinhirne, another ICC advocate: The strategy at NIH of pretending not to know what the real disease is has gone on now for over 30 years. For the last 7 years, research on ME could have been done using subjects who actually have ME selected by the ICC. Why not do some actual science instead of public relations?

Erik Johnson, an original patient in the 1980s Lake Tahoe outbreak, also weighed in. Johnson argues that mold was responsible for that outbreak and reports having sustained his health since then through mold avoidance. Federal officials introduced the inadequate 1994 definition for chronic fatigue syndrome to deliberately hide the serious nature of the illness, he says, and the salient details of the Tahoe outbreak have been ignored.

Here€™s what he tweeted in response to Dr. Collins€™ tweet: That is absurd. How do you ‘plan” to understand CFS by a policy of never looking into the incident that started the CFS syndrome? Clearly your goal is one of obfuscation.

In another tweet, Johnson linked to an article in Nature about sanctions imposed in China on people who commit scientific misconduct: If this were China the CDC/NIH researchers would be out of a job and very likely in prison, he wrote.

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