Any and All of the Above: ME/CFS Advocacy in the age of Multiple Toxicities

I have researched ME/CFS community advocacy efforts of the past few years in the United States, and it is not clear to me where one should best put a shoulder to the wheel. For many of us, the very limited energy we have is precious. I love and admire those who have dedicated themselves to advocacy for our patient community, even as I am now at some distance from the front lines of that work.

I grew up in and established my early career in Washington D.C., so I know the advocacy game well. I left D.C. in part because I only found ways of change-making that are aligned with my deepest personal values once I stepped outside of the formal policy realm. It was a classic Catch-22 epiphany that offers me ongoing challenges, especially now that I am a member of a patient community in desperate need of extending effective advocacy strategies.

“To be truly radical is to make hope possible, rather than despair convincing.” – Raymond Williams

I know I need to find a direction that I find hopeful in the near term, and I imagine I am not alone in that need. Honestly, at times I fear even with all best efforts applied it could take 20+ years for the barriers to ME/CFS policy and funding support to break through to new approaches to treatment and cure. I think about the long decades of ignorance and then active resistance to change around the toxic effects of asbestos and tobacco, and I feel discouraged.

In the case of ME/CFS, we seem to have a diverse set of causes and conditions. And some of those causes likely have liability- and profit-related interests involved that actively will resist and subvert progress; see the aforementioned asbestos and tobacco examples. This resistance and subversion is to be expected but not condoned.

Our situation is far more parallel to biohazard issues than to HIV/AIDS. HIV/AIDS was revealed to be a single pathogen disease that could be addressed by a series of direct pharmaceutical solutions. This narrows my focus to the level of root-causes versus symptoms for ME/CFS. Stakeholders in our patient community seem to argue most about what symptoms to include in definition criteria when that is the least important thing.  There is a far more important question.

Two ME/CFS doctors each told me that in their experience, essentially: “something pokes a hole in the immune system and then the pathogens can go to town.” But the main approaches they have to offer are antivirals to address symptoms (viral load) rather than the root cause(s) of the problem.  Why aren’t they asking: “What it is that pokes a hole in the immune system in the first place?”

The fact that we in ME/CFS-land do not all seem to have the same symptoms, nor set of pathogens in our labs leads me to suspect it isn’t about our particular set of pathogens/ body burden but instead the vital question is, “Why can’t our bodies fight them off?”

Many ME/ CFS specialists have a pet theory which they can prove out in some of their patients because they are true and valid…but only for some of their patients. Stomach viruses, cardiac issues, immune dysfunction, vagus nerve: these specialists have each grabbed on to their part of the elephant and insist that must be the whole elephant. (More on this from Quixotic.)

Even some of the more commonly agreed upon and verifiable clinical aspects (low NK cell function; tilt table test; 2 day V02Max exercise test) have been virtually ignored as a “true biomarker.”

Consequently, wrangling about symptom-sets is unresolvable and likely to be endlessly circular. This is also the source of some of the most maddening infighting we see amongst our own patient communities. Like the researchers, patient groups also may have their favorite definition or “root cause of illness” that they would prefer to see given priority.

The more I have worked on my own symptoms and history, and read widely from other patients, the more clear it is to me that we are suffering a multi-causal catastrophe for our neuro-endocrine-immune-microbiome systems. And the causes may be very different for any given set of ill people, even if the presentation (symptoms) may have roughly similar and devastating effects.

Synergistic toxicity: mycotoxins, pesticides, heavy metals, hundreds of chemicals we all are exposed to on a daily basis – and for each of us the final straw may be completely different, but we are overloaded with synergistic toxicity. (This is the scientific principle that any two toxins --for instance two or more heavy metals may be orders of magnitude more toxic together than individually.)

Mycotoxins alone are enough to wreck the digestive, respiratory, cardiac and immune systems among others. Any two or more toxins together can be far worse. And this explains why “cause” is so hard to define for any set of ME/CFS people, because the picture of why any individual is sick is unique to their own history of exposure(s) and toxic burden. In many cases there will not be one specific cause.

Hello, fellow canaries.

Medical science is unfortunately not set up to deal effectively with multi-causal anything.

My personal “illness cause” issues include verified and remediated toxic mold exposure, verified heavy metal burden (arsenic, mercury), verified severe pesticide exposure in a refugee region, and multi-year use of antibiotics which devastated my gut biome. My strongest improvements so far have come from removing myself from the mold, daily energy conservation (called “pacing” as per the Stanford approach), and I am also seeing incremental progress doing low-dose chelation for the mercury and arsenic.

Where in this constellation of multiple causes is there a clear, single disease factor (like HIV/AIDS)? Where is the targeted policy agenda we can push forward that will help us heal? From where I sit, there isn’t anything discrete enough there to advance -- and I think that is the problem for asking research medicine to find “the” answer for us: There is likely no single answer.

For many “invisible diseases” the body is doing its best to survive in a severely toxic situation – once our ability to clear toxins gets backed up not only are we drowning in external toxins, we can’t even clear our own metabolic byproducts like lactate. And sure, maybe someday we may be able to genetically identify which folks may be predisposed to be more vulnerable to which toxicities.  That doesn’t help us right now.

So many stakeholders are focused on, “Is it answer A (a specific pathogen)? Answer B (genetic or cellular defect)? Answer C (mycotoxin exposure)? Answer D (heavy metals)? From my perspective the answer is “E (any or all of the above).”

No matter what the source of toxicity, a hard enough push breaks our metabolism to the point where our native pathogens (whatever we’ve been exposed to chronically or acutely) can cause chaos. We begin reacting to everything, and the immune system is running on empty in its own unique configuration: the immune overdrive never-catch-a-cold-anymore-but-always-unwell people, or the immune compromised I-catch-everything people. MCS, Fibro, ME/CFS with or without Fibro…  The different manifestations are many and at times overlapping.

I would love to be proven wrong, and I would love it if it turned out there is one thing we can all do that will help all of us. I just don’t believe that is the case. For those where mold is primarily the issue, avoidance and detox is their best bet. For others, different factors must be prioritized and addressed methodically and appropriately.

We have such a long way to go for that to be standard protocol when a 10 minute doctor visit usually still ends with, “Maybe it is all in your head.” Our challenge is not just with the environment and results of 100+ years of industrialization and toxicity, but with the monolithic structure of medical care and reimbursement coding which is not designed to help solve complicated multi-causal illnesses.

Consider this: I am privileged to have a highly qualified and diverse medical team, but not one of them was willing to consider that the mycotoxins produced by the severe stachybotrys and aspergillis infestation in our house was a significant contributor to my illness. “Possibly contributory, but not causal,” was the best I got.  If we can’t get some of the most advanced specialists in the US on ME/CFS to consider mold as a possible primary cause, we have a long way to go.

We are like the colony collapse bees. All the research by EU and even the US military is pointing to specific pesticides and other environmental stressors acting together to create colony collapse (insults which are worse in combination, creating vulnerabilities to natural bee disease and parasite vectors), yet do we see any action to curb use of those pesticides in the US?

The endgame for defining the multiple causes of our sickness also involves huge liability and lost profits to, for instance, the insurance / disability providers, the entire real-estate, rental, building, construction, chemical, cosmetic, and coal power generating industries. That’s a lot of cards and interests stacked against a Federal medical solution to our challenges.

So, what can we do? Where do I find hope? Where have I decided to put my modicum of energy? The answer is going to be different for each individual, based on his or her own history and available energy.

For me, the answer looks something like this:

·      Support one another. Online patient forums and related email groups provide important patient-to-patient emotional support but also treatment information.

·      Support those who do engage in direct advocacy and engagement, acknowledging I don’t have the stamina to do so myself.

·      Contribute data to crowdsourced, patient-centered sites such as myPatientMatch that systematize the ability to track, document, and search on treatment reviews, and to compare treatment outcomes for folks with ME/CFS (and subtypes) and any other “invisible illnesses.”

·      Believe and work from the premise that we can find answers without relying on the medical establishment. Eventually it may follow us when enough of our arrows hit the target.

·      Keep doing what works for ourselves for healing, and help others along the same path. Mold avoidance and heavy metal chelation groups on Yahoo and Facebook have been invaluable resources for me and I have seen significant gains from what I have put into practice through that learning. I feel helpful and hopeful when I can help others who are just learning about those approaches.

·      Eat and live as cleanly as possible (organic, nontoxic).

·      Stay determined to heal – don’t give up even in the face of these enormous challenges. Keep trying.

·      Nurture and embody hope, by pursuing directions we find hopeful.