A series of recent articles have laid bare the Lyme disease problem in the U.S with startling clarity. Given the disease’s remarkable spread in forty years (it was identified in Connecticut in the 1970’s), many people with mysterious fatigue and pain problems have a stake in getting this disease handled. That means reliable diagnostic tests (including those that differentiate it from ME/CFS and FM) and treatments that work.
How many people, after all, with ME/CFS/FM/Lyme wonder which disease they have? (How many are afraid to get tested for Lyme because of the testing problems?).
The U.S. medical system isn’t close to getting either providing reliable diagnoses or treatments. Remarkably enough, it’s hardly even trying meaning that it’s mostly washed its hands of possibly millions of suffering patients. It’s getting plenty of push back, though, and it’s possible some changes will be occurring. .
Maya Dusenbery and Julie Rehmeyer’s “The Science Isn’t Settled on Chronic Lyme” is all too reminiscent of the struggle that chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have been through. The blog focuses on a disease – Post-treatment Lyme Disease Syndrome (PTLDS) – which is locked in the same struggle for recognition and funding that ME/CFS and FM are, except that in many ways it’s worse. Whatever researchers are saying about ME/CFS/FM in private, at least major medical groups aren’t publicly saying that ME/CFS and FM isn’t real.
Post-treatment Lyme Disease Syndrome (PTLDS) occurs when the patient remains ill with symptoms similar to those found in ME/CFS and FM even after standard treatment. The problem starts with the massive amount of grey area found in Lyme disease itself. Noting that current Lyme tests can’t reliably diagnose anyone with Lyme disease, Dusenberry and Rehmeyer wonder how anyone can even remotely say anything with certainty about chronic Lyme disease.
Yet they do. Despite a CDC report which acknowledged that post-treatment Lyme disease syndrome or PTLDS exists and is prevalent, Dusenberry and Rehmeyer noted that “the Infectious Disease Society of America, or IDSA, has repeatedly and flatly claimed that the whole notion of chronic Lyme is “not based on scientific fact.” Simon Wessely couldn’t have said it better:
Skeptics argue that the array of symptoms PTLDS patients experience—muscle and joint pain, fatigue, cognitive problems—are so subjective and nonspecific that they may have nothing to do with Lyme disease. Sufferers’ true problem might be psychiatric—depression or “maladaptive belief systems“ or “a tendency to somatization.” Or patients may be overselling how bad it is: In its 2006 guidelines, IDSA stated, “In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne coinfection.”
The ugliness reaches a peak not seen in the ME/CFS and FM fields in decades when two Lyme experts openly state that because more women have PTLDS, it must have a psychological origin.
Along the way, Dusenberry and Rehmeyer provide the best short explanation of the staggering problems with Lyme testing that I’ve ever seen. Disturbingly, they point out signs indicating that the bacteria can survive antibiotics and that the current testing regimen misses more women than men, and they strike back against the skeptics and deniers of PTLDS in the best way possible – with hard science.
What this disease and the people who have it clearly need are not more invectives but more funding. (One interesting hypothesis that just popped up, though, proposes that PTLDS patients’ immune systems are attacking the glycolytic enzymes in their neurons. That’s not far at all from the energy production hypotheses floating around ME/CFS).
The authors end with a plea for the medical community to roll up its sleeves and get to work.
That means that ironically, those who howl that chronic Lyme is “fake” BECAUSE SCIENCE aren’t just being unscientific, they’re also impeding science. On top of that, they are attacking extremely vulnerable patients and feeding sexist stereotypes. So cut the contempt. Let’s do the science and figure this disease out.
The Ticks Are Winning
The Scientific American’s June 2018 article, “In the Battle against Lyme Disease, the Ticks Are Winning“, cites many of the same arguments as the Slate piece as it deplores the “false image” of an easily diagnosed and treatable disease perpetrated by health officials. Researchers cited being turned down for grants because Lyme was a “middle-class disease,” or, because it “isn’t that much of a problem.”
The article notes that CDC’s own figures suggest that 300,000 people contract Lyme disease every year. The disease is found in over half the counties in the U.S. (and is continuing to spread). Despite the $4 billion it’s expected to cost the U.S. economy, the NIH devotes a paltry $22 million a year to it.
Whether because of agency intransigence (CDC), sexism, a bad rep. or just a bad start, Lyme disease is the Rodney Dangerfield of insect-borne diseases. In 2015, the NIH spent $16 per case of Lyme and $16,000 per case of West Nile Virus. It’s yet another major neglected disease hiding in plain sight.
Yet Lyme is just part of the problem. Ian Lipkin and others have demonstrated that ticks can carry other pathogens, few of which are getting much attention. Konstance Knox’s data suggests that some people diagnosed with “chronic Lyme disease” have a tick-borne Powassan Virus infection. She’s currently studying the incidence of insect vector borne pathogens such as Lyme disease, Powassan virus and others in Dr. Peterson’s ME/CFS patients.
Congress Gets Into the Act
Again and again, we’ve seen the NIH and CDC unwilling to address clear funding disparities in diseases and conditions unless pushed to do so. It’s remarkable, though, to see the two agencies spending so little money on such a clear and present danger as Lyme disease.
Having apparently tired of sending the NIH and CDC directives to do more on Lyme disease that get ignored, Congress has lately given its NIH directives more teeth. Amongst the dozen Lyme directives included in 2018 Appropriations bill to improve Lyme surveillance, prevention, diagnosis, etc. is an order to have the CDC justify its crummy spending on Lyme disease using burden of disease figures (Disability Adjusted Life Years (DALYs). Plus, the agency is going to have to provide estimates of economic costs (medical costs, indirect medical costs, non-medical costs, and productivity losses) imposed by the illness. That report is expected to demonstrate “the glaring disparity” between the resources the CDC commits to Lyme disease compared to other insect-borne illnesses.
Now that congressional oversight has been strengthened, thanks in large part to efforts by stakeholder organizations, excuses for noncompliance will no longer work. Bruce Fries, President, Patient Centered Care Advocacy Group
Time will tell whether funding will increase but the CDC’s and NIH’s feet are finally being held to the fire.