The Lyme disease-ME/CFS connection

When the Chronic Complex Disease Program (CCDP) first opened its doors at BC Women’s Hospital in 2013, it was almost immediately dubbed the “Lyme clinic” by many in the media as well as in the Lyme community even though it was clear from the outset that Lyme disease would be just one of three illnesses being serviced by the clinic. The other two are fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Equally clear from the outset was that the program was going to generate a whole lot of controversy. Not that this comes as much of a surprise. Anything and everything related to Lyme disease creates controversy so it would have been unusual for the Vancouver clinic to escape that most predictable of fates.

While the thinking behind CCDP was that it would greatly improve the quality of life for patients suffering from each of the target illnesses by placing them under the direction of the clinic’s specialists — which include a naturopath, social worker, psychologist, nutritionist, nurse practitioners and an acupuncturist in addition to medical doctors — things got off to what can only be described as a rocky start. It quickly became clear that CCDP was underfunded, understaffed, and weighed down by serious administrative conflicts. Worse, it was falling far short of delivering the level of care Lyme disease patients, in particular, felt they were promised. 

I will leave that for others to comment on.

My interest in CCDP centres on the Complex Chronic Disease Study Group (CCDSG) that was founded alongside (and intertwined with) the program. The stated intent of this research group was and is to study participating clinic patients in the hopes of developing improved diagnostics and treatments. And since pretty much everyone except a radical few agree that chronic Lyme disease sufferers would benefit from both better diagnostics and more effective treatment options, CCDSG seemed like it could play a key role in bringing about both.

Since its founding, CCDSG members have published several studies in medical and scientific journals using data gathered from CCDP patients. And from those studies, it has become apparent that the study group doesn’t view chronic Lyme disease as an illness in its own right, but rather as a misdiagnosis of ME/CFS. 

One study published early in CCDSG’s investigations examined a condition that researchers dubbed Alternatively Diagnosed Chronic Lyme Syndrome (ADCLS), which they defined as clinically diagnosed Lyme disease cases whose only laboratory support is positive test results from a US-based lab specializing in tick-borne illness testing. Though the lab targeted by these researchers is not named in the study, it’s safe to assume they are referring to iGeneX, a private lab frequently used by Canadians looking to confirm that their persistent symptoms may be the result of exposure to Lyme bacteria. After much testing of CCDP patients, the study’s authors concluded that there is essentially no difference between someone diagnosed with chronic Lyme disease and someone diagnosed with ME/CFS. Researchers further concluded that the positive test results for Lyme disease from iGenex were false.

In the succeeding years, CCDSG researchers have published many more papers, all of them with ME/CFS — and not chronic Lyme disease — as their primary focus. And judging by the grants recently secured by CCDSG members, the focus of research efforts will remain squarely on unlocking the mysteries of ME/CFS. I have seen no evidence that this research group plans to investigate any issues of immediate concern to chronic Lyme disease sufferers, such as better detection of early stage Lyme disease, improved diagnostics to determine if a Lyme infection has been cleared from a patient’s system, the effectiveness of long-term antibiotic treatment, and so on. 

It’s apparent from published research that CCDSG members do not believe that ongoing infection with Lyme bacteria is responsible for the persistent symptoms experienced by so many chronic Lyme disease patients. They are instead looking for evidence of a stealth pathogen or a novel biological process underpinning chronic symptoms. I can’t help thinking that the clinic’s Lyme patients who agreed to participate in these studies will be disappointed to learn that their data isn’t being used for Lyme-specific research. Then again, if these researchers are right, they could turn up a key piece of information that ultimately results in eradicating persistent symptoms regardless of whether a patient’s diagnosis is chronic Lyme disease, ME/CFS or fibromyalgia. And that would definitely be a good thing.

Originally published in The Lyme Report, Issue 30.