How to Be Your Own Best Advocate
By Amanda Mathiesen

When you have a well-researched disease with many treatment options, your relationship with your healthcare team will probably be simple. Let’s say, for example, that you have type 2 diabetes. Your providers will almost certainly talk to you about medication, diet, and exercise. With a combination of these treatments, you are likely to be able to resume a normal life.

But what if your disease is not well researched? What if the Centers for Disease Control has recommended exactly zero medications for your disease? What if medical schools are, by and large, not teaching doctors how to treat or even recognize your disease? What if exercise makes you feel worse?

These questions are familiar to me, because I’ve had all the symptoms of ME/CFS for over two decades. For an embarrassing number of years, I believed my primary care physician when she said that (a) I didn’t have the disease and (b) there would be no point in diagnosing me if I did. I also believed her when she told me that there was no treatment. None of these things were true. Around 2020, I got a new and excellent primary care provider.

During the course of twenty years, I tried to exercise my symptoms away, only to find that my disease progressed from moderate to severe. By 2021, I was largely bedbound. When I was finally diagnosed with ME/CFS and fibromyalgia by a kind rheumatologist in January 2022, I was determined to make up for lost time.

Like my former PCP, my new rheumatologist, whom I’ll call Dr. Basil, was under the impression that there was no treatment for ME/CFS. My online reading, however, told me that low-dose naltrexone (LDN) was helping patients with the pain and brain fog that come with this neurological disease. I was desperate, and I wanted to try it.

Dr. Basil was not convinced. He had never prescribed the drug before, he didn’t know of any colleagues who were prescribing it, and he was concerned that the drug might be harmful.

So what could I do? I could wait for the CDC to approve a medication for ME/CFS. Then again, it had been almost nine decades since the 1934 epidemic of myalgic encephalomyelitis in Los Angeles, and the CDC had yet to approve anything to help sufferers with the disease. Alternatively, I could wait for medical schools to start training doctors to understand and treat ME/CFS. The only problem with that approach is that if medical schools start doing this today, the first newly minted ME/CFS-literate doctors will finish their training in 2030.

Another possibility was that I could continue to make appointments with other rheumatologists in the hope of finding someone who was willing to prescribe the drug. I had seen one rheumatologist before Dr. Basil, though, and she hadn’t been able to diagnose any of my diseases with autoimmune features, which include Crohn’s disease, fibromyalgia, and ME/CFS. In fact, she had said with an air of certainty that I didn’t have any autoimmune diseases, something that would have come as a surprise to my gastroenterologist, who had the colonoscopy photos to prove otherwise. This experience had left me with the impression that good rheumatologists were hard to find.

There was something in Dr. Basil’s manner that suggested to me that he was smart and ethical, and that I should keep stating my case. After about six months of me advocating for myself, he prescribed LDN. Although each patient is different, LDN has reduced my pain and brain fog more than anything else I’ve tried, and it’s made my life much more livable. I have experienced no side effects.

Here are the lessons I learned about self-advocacy along the way. My hope is that you, the reader, will find the inspiration to work with your own smart, ethical doctor to access better treatment options.

1) Do your research.

I first read about LDN when I joined an online platform called stuffthatworks.health in 2021. It’s a website that collects feedback from people with chronic diseases and keeps track of which treatments are most helpful to them.

While the online crowdsourcing site had gotten me interested in LDN, I knew that Dr. Basil was more likely to consider putting me on the drug if I could find medical articles to support that course of action. In February 2022, I found two medical articles by Jarred Younger, PhD, the Director of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama. His work confirmed that LDN was a promising treatment for chronic pain in autoimmune conditions. I sent these articles to Dr. Basil.

2) Listen to what your doctor’s concerns are, then answer those concerns.

After a few months, Dr. Basil pointed out that even if he wanted to prescribe LDN, he didn’t know what the dosing protocol was, since nobody he knew was using it. I sent him the dosing protocol made available online by the LDN Trust, a U.K. nonprofit designed to help patients access the drug. When Dr. Basil eventually found a colleague who was prescribing the drug, the colleague’s dosing protocol was the same.

Second, Dr. Basil didn’t know of a pharmacy that could compound the drug. Neither did I. It definitely wasn’t available through the big chain drugstores. I checked in with MassME, and Ken Casanova, the Head of Patient Services, told me of a compounding pharmacy that many patients were using. Insurance would not cover the prescription, but a three-month supply was under $55. I could afford it.

Admittedly, I had an advantage in terms of finding this information because that’s what I used to do professionally before I got sick. I was a reference librarian. If you need help finding medical information on an ME/CFS treatment that interests you, I encourage you to ask the reference librarians at your local library. You may be surprised by all the resources they have for you.

3) Appeal to your doctor’s sense of empathy.

At the end of six months, Dr. Basil was still reluctant to prescribe the drug, largely because he was concerned it might be harmful. And yet, everything I had read said that side effects from LDN were rare and mild. My ME/CFS-related pain, on the other hand, was not rare and mild. It had become severe and constant. I dreaded living another year with the pain, let alone the three additional decades I might expect to follow.

However, I had an ace in the hole left. Two, really. The first was that my rheumatologist's office contained a sign indicating that patients had the right to have their pain addressed. The second was that I was more and more certain that Dr. Basil was an ethical and empathetic person. I believed that if I raised the issue of the right to pain relief, my doctor's own sense of ethics would persuade him to give me a test run with LDN.

That turned out to be the case. I’ve been on LDN for about a year now. My pain has gone from “How on earth am I living with this?” to “Right, I can live with this.” A year ago, my brain fog was so severe that I was asking my husband for the names of our nieces. It’s now cleared up to the point where I was recently able to publish a letter in the Boston Globe about the debilitating nature of ME/CFS. I’m also able to do a bit of volunteer work under the tutelage of Ken Casanova, the man who helped me find a compounding pharmacy.

Conclusion

I’m sharing this story with you because you may be where I was in January 2022. Your doctors may want to help you with ME/CFS, but they may not know how.

Given the circumstances, what should we, the millions of ME/CFS patients living in the U.S., do? Should we wait for the day when the CDC and medical schools start prioritizing our illness, or should we try to work with the doctors we already have? Large-scale advocacy work is essential in the long term, but I believe that in the short term, we need to work with the doctors we have.

Looking back, my original self-advocacy teachers were the young, gay men I met when I started volunteering for an AIDS hotline in 1990. At that point, AIDS was still largely a death sentence. Some of my colleagues at the hotline had HIV themselves. As exhausted and sick as they were, I saw them advocate for themselves and other patients when the government was doing little or nothing to help them.

Self-advocacy is not without its difficulties for both patient and doctor. I’m sure Dr. Basil would tell you that for six months, I was a pain in the neck. That’s the downside of self-advocacy: if you refuse to accept that your pain cannot be treated, you may be perceived as difficult. But then, those of us who struggle with ME/CFS are fighting a difficult adversary. By 2022, I had the rock-solid determination that only minute-by-minute agony can teach, and Dr. Basil bore the brunt of it.

At this point, though, I think Dr. Basil and I are happier and more capable than we were at the beginning of our journey together. I have less pain and brain fog, and Dr. Basil is now empowered to treat other patients that he previously might have considered untreatable. That’s why he became a doctor in the first place: to help people. I feel our interactions helped him become a more effective doctor, and he feels, correctly, that he assisted me when nobody else would. Perhaps a similar journey is waiting for your doctor – and for you.

These are Jarred Younger, PhD's articles: (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ and https://pubmed.ncbi.nlm.nih.gov/23359310). 

The LDN Trust's dosing guide, patient guide, and prescriber guide can be found here: https://ldnresearchtrust.org/2022_LDN_Guides. The LDN Trust is a British nonprofit, and all their guides are reviewed by medical doctors. The 2022 Guides are the most recent ones. 

Note: The Massachusetts ME/CFS & FM Association endeavors to make our content as accurate and timely as possible, but we neither dispense medical advice nor endorse any medical product, practitioner or technique. Readers are advised to work with their primary healthcare practitioners – using strong self-advocacy! -- before engaging in any health-related practice.