It was great to recently meet ME/CFS advocate Mary Dimmock during her visit to JAX to meet Derya. This was also an opportunity to interview her for our “People in ME/CFS Research” spotlight, learn her story, and benefit from her opinions of the field. Mary has a background working at Pfizer, a pharmaceutical company, and has become a major name in ME/CFS advocacy after her son became ill with this chronic disease.  She has done advocacy at the state, federal, and international levels to attempt to increase funding for ME/CFS. We are also very happy that she has agreed to be part of our Community Impact Steering Committee here at the Jackson Laboratory ME/CFS Center. Keep reading for the full interview! 

Hi, Mary. Thanks so much for taking the time to meet with me! Your son has ME/CFS. What was his path to diagnosis like, and what struggles did he face?

Hi, Courtney! So my son came down with ME/CFS as the result of picking up Giardia while backpacking through Asia for 5 months. He started going to a local doctor and they didn’t recognize it, but they started doing testing and he found out he also had Lyme Disease according to the CDC. They started treating him with antibiotics for that, but he wasn’t getting better. Then he got a job in Washington state, so he started going to a doctor there at Georgetown. An infectious disease doctor there told him he needed to get exercise, and at that time he didn’t know that that was a bad idea so he went and got a gym membership and he crashed pretty badly. He waited a couple days until he felt like he was back to baseline, and then he tried again. Well, he crashed again. In the end, he ended up diagnosing himself. He went and researched it. From there we went to a number of places – the Lyme Clinic at Columbia and to Dr. Charles Lapp’s office, and he said, “yes, you have this.” So he fell ill in August 2010 and finally in May 2011 we went to see Dr. Nancy Klimas, who officially diagnosed him and actually tried to treat him. Since then he’s been on a number of treatments with her, including Rituxan for about 4 years, and that’s made a significant improvement in his quality of life, his stamina, and his ability to exert himself.

In terms of struggles along the way, he ran into doctors who insisted he was just depressed. I ran into doctors who insisted I had problems because I refused to accept that he was just depressed. He had doctors who told him they would not even consider getting him a handicap parking sticker until he undertook a program of exercise, specifically aerobic exercise. He had to see a psychiatrist as part of his application for disability, and she just brutalized him. He came home shell-shocked because she went into a series of questions like, “why do you think you’re sick?,” “why do you want to go on disability?,” “why can’t you do this or do that?” And then she had the nerve to call me after the appointment despite doctor-patient confidentiality, to try to convince me that there was something really mentally wrong with him. He’s had doctors say that ME/CFS isn’t that bad and he shouldn’t be on Rituxan. So it’s been pretty brutal. I’ve gone to most of his doctor’s appointments and have watched how these doctors have responded to someone with this disease. I’m also really active in the community so I get a lot of feedback from patients that reinforce what my son has experienced. A big thing right now is that even doctors are not recognizing post-exertional malaise, which is the defining symptom.

That’s awful. So much pushback, and it took almost a year then, for him to even get a diagnosis! You wrote the “Thirty Years of Disdain” manuscript with your son. What was your motivation you had for writing this manuscript, and do you think it had the effect that you wanted it to have?

My son was really the one who encouraged me to write it. As young and inexperienced as he was, he realized really quickly that nobody was going to do anything about this. This was in early 2011, and he went to his first CFSAC meeting. And one of the CFSAC people said to him, “you have to understand that we’re also dealing with really serious diseases, and this one’s not that bad.” So we had begun to understand how the medical community had been treating it, and we had begun to scratch the surface on some of the history. And he said, “we really have to find a way to put this together,” because at that time, there was different information everywhere, so it was difficult to put the pieces together. I have an Anthropology degree, so I tend to look at things and say, “how do all these pieces fit?” So I tried to do some advocacy initially, but I think I needed to write it for my own mind, and I also think we needed a resource that the community could use that would help them, particularly with some of the background. I worked on it for about two years, and I remember doing research often in the middle of the night, reading papers or yet another thread somebody forwarded to me, and thinking, “are you kidding me? This is what they have been doing all these years?” I was just coming out of Pfizer, and I thought I knew how research was done, and so this was just a bizarre universe. It really helped the impact for me, because it helped me understand what some of the critical issues are and where we need to see change in order for patients to get the care they need.

In terms of how it’s helped the community, I think it would have had more of an impact if I could have put it into a proper book and gotten it published. But it really wasn’t suitable to be put into a book format as it was written, so it would have needed to be re-written. So I ended up just putting it out online and hoped everyone could use it however they wanted. I had been really careful to document the sources carefully and use the most official resources I could get, so that if people wanted to pull on a particular thread, they could. And I think it’s been used for that purpose. People pick up a piece and start to understand it and put more pieces together. And then also, it held a standard for me for what quality science looks like. This was nowhere near the quality I expected to see for science in this field, and even today, I still hold things up and really look at them to see if the science is of quality.

Why do you think ME/CFS is so misunderstood in the first place?

Well, it’s a complex disease. Personally I think that what happened in the late 1980’s, when a group of psychiatrists came in with no evidence for their theory, just proposed this new theory for cognitive behavioral therapy, and started driving it, has just buried this disease. It’s created a narrative about it that still exists today, that has perpetuated the mistreatment in clinical care. And they also have had such a strong ability to be able to get into the press – it’s in our clinical guidelines, it’s in media articles, it’s everywhere. So in the face of that, researchers are like “I’m never going to research that. I’ll never get funding.” It’s made it impossible for pharmaceutical companies to come in here as well.

One of the roles I had at Pfizer was to work on the processes that are used to decide where Pfizer does research. And you look at it from the perspective of, do we have a possible drug target, is it doable in terms of the chemistry, do we know enough about the disease, can we find the patients, can we write a label? In all these factors that are important, we are broken for all of them in this disease. What the psychiatrists did was to change the narrative about the nature of the disease at a point where we didn’t know anything about it. They were able to take it over and they have polluted the evidence space with studies that are poor quality, and basically require that patients have 6 months of fatigue, period. And that’s really hurt us because academia, pharmaceutical companies, and doctors just ignore it. And then I think that there’s some tendency within the medical community where if we don’t know what it is and we don’t have a test for it, it must be psychological. So I think there’s a number of factors, and a lot of them have been driven from the perspective of the biopsychosocial approach, where you focus on getting people back to work. It focuses on the social impairment that they have that keeps them from going to work. I think that the work the psychiatrists did had a chilling effect on so many facets of what needs to work for this ecosystem of research, drug development, pharmaceutical companies, medical care – all that has to work together to deliver good care. And it’s all been so broken.

Wow, all these factors have really come together to have such a negative impact. So, what are some of the advocacy roles you have taken to increase understanding for this disease?

Originally I did a lot more work in research, trying to get more funding. I’ve done a lot of federal advocacy. I’ve done a lot of working with the community to try to get joint positions and letters sent to the government telling them what we need. I’ve done work to submit proposals to the government to reclassify the International Classification of Diseases definition, because right now ME/CFS is equivalent to the symptom of chronic fatigue and that makes it hard to get insurance reimbursement. I was on the Common Data Elements committee, plus multiple CFSAC work groups. I’m on two right now, one for the FDA and one for medical education. I’m doing some state-level work. I want to continue to do work like what we did with the New York State. I went to the Department of Health and will be going back again. We’re trying to get patients in Connecticut organized and we’re going to have a May 12^th event. I’ve also participated with the CDC on their medical education. They did one about a year and a half ago that led to them updating their website. I’ve also done a lot of work internationally. But my biggest focus right now is on medical education. We’re looking at what we can do to get an article published, ideally in the Journal of Medicine but maybe elsewhere. Also just getting clinicians established. And I feel like this is really important because from a pharmaceutical perspective, you can’t recruit patients for studies if you don’t have patients diagnosed.

Wow, that’s a lot of stuff. In your opinion, what does it take to be a good advocate for patients?

I don’t think it’s a one size fits all thing. It’s knowing what you’re good at, learning, trying to understand what’s going on and doing your homework ahead of time. But it’s really knowing what you’re good at – I know one advocate in Massachusetts who is really good at reaching out to newspapers. She’s driving a lot of Unrest screenings up in Massachusetts too. She doesn’t do the kind of work I do, she does different work that she’s really good at. So I think it’s knowing your skillset, doing your homework, and not getting discouraged because it’s really, really slow. Understand that it does take time, but we do want to see action now. I don’t know if I do this very well, but I know advocates who are just inspiring in the way they tell their story and how this has impacted them, and getting awareness is going to require that – like what Jen Brea did with Unrest – finding ways to really get the impact this has on patients out to people is really important. Good advocates are able to do that very effectively.

How can researchers work with the patient community to support progress and make sure that research is patient-centered?

So, I have an example for you. Have you heard of Leonard Jason? Lenny is doing a patient survey right now on PEM, and it’s brilliant. He’s done a lot of work to try to characterize PEM for many years, and after the CDE effort came out and was made public, a group of people said, the DePaul Symptom Questionnaire is not cutting it. So he designed this survey, and it goes through all the feedback. I think that’s a really great example of hearing what the patients are saying, actually engaging with the patients in an active way, and then taking that and incorporating it into a survey that can go back to patients. And then he’ll take it, process it, and publish it. And it helps advance the field. I knew someone who had ME/CFS when I first started my career back in around 1982, and I just thought, this is some kind of bizarre illness. It’s really difficult to know this disease until you see it in a patient. It wasn’t until I sat across the table from my son at an Easter dinner, and over the course of an hour I watched his whole body just melt, that I realized what PEM was doing to him and how little stamina he had to think, be upright, and be engaged. Being able to really get at that symptom and connecting that with the science, is really important.

I’ve also given a lot of thought into how patients are selected for studies, and I think the patients can give a lot of input to really crisp up the way patients are selected. We’ve watched researchers just select patients that aren’t going to teach them anything in their studies. Patients also have really good insight into what’s working and what isn’t, and they’re really remarkable to me in terms of how much they know about this disease and what helps and what doesn’t. Obviously there are different subsets here, and I think the work that you’re doing will really refine that, and being able to match that with what patients know will be really helpful. 

What is your overall impression of the ME/CFS field at the present?

It’s rapidly evolving. It’s hard to answer that question because if you look at what’s going on in clinical care separately from what’s going on in research, clinical guidelines and medical associations are so stuck. It’s gotten a little bit better in the past 2 years since the IOM report, but it’s slow. I think research is really starting to pick up, and there’s a commitment to it. I think it still lacks any kind of cohesive overall plan, and I think it’s still moving too slow and there’s still a lack of funding. I worked on a paper about the disease burden, and NIH has done an analysis of their spending levels against disease burden for about 65 diseases. So we estimated it for this disease, and looked at where it fell on NIH’s chart of disease burden. So if you have two axes with funding levels vs. disease burden, we’re high on the disease burden axis but low on the funding level axis. We’re not moving quickly enough to correct that and correct the ability to diagnose patients and get them into trials, so the fundamentals are still keeping us broken. We’re starting to address them, but we’re going too slowly. But there are great things being done, and there are new people coming in, so new things are happening.

Is there any current research or any initiatives that make you feel hopeful?

We’ll learn a lot from the exercise studies. I know there’s a risk to patients with the exercise studies, but I think they will tell us a lot. I am really psyched about the Center grants. And I think we’ll learn a lot too from the work you’re doing here. There’s also some neurological work being done that I think is important to understand the issues going on there.

Do you have anything else you want to add?

One thing I would share is that when I was at Pfizer, as a researcher it was really easy to lose track of the urgency patients feel. Giving them a little bit of benefit can make a huge difference in their life. So it’s not just urgency for a cure, but even for something that could be helpful. So at Pfizer we had these banners all over, that had pictures and stories of patients, and they said “the patient is waiting.” And I remember to this day how much it impacted me. I think it’s easy when you’re doing research to get removed from the kind of impact you can have and the timeline may seem unimportant, but when you think about it as “what can I produce today?” – it really would make a difference. So I work with patients who are pulling together exactly that kind of view – here’s what we want to see and also here’s how we can make that happen.