We are pleased to present Charmian Proskauer, an ME/CFS advocate and former cell biologist and website manager, in the latest “People in ME/CFS Research” spotlight. Charmian is the President of the Massachusetts CFIDS Association, and has participated in many advocacy initiatives at both the state and federal levels as part of the organization. She is also the Chair of the US Action Working Group, and participates in some of the working groups for Chronic Fatigue Syndrome Advisory Committee (CFSAC). Charmian  and a group of patients and advocates from Mass CFIDS visited Derya and me at Jackson Labs several months ago, where they provided us with valuable insight. Keep reading to find out more about how Charmian began advocating for ME/CFS, and some of the latest initiatives she’s involved in. 

Hi, Charmian! Thanks for much for meeting with me. You’re the President of the Massachusetts CFIDS/ME & FM Association, which is one of the oldest and most active patient advocacy organizations in the country for these diseases. Can you tell me more about how you got involved in advocacy?  

Hi, Courtney! So I am not an ME/CFS or Fibromyalgia patient, but my husband has had ME/CFS since the mid-1980s. He was involved in the CFIDS organization since nearly the beginning, where he was on and off the Board for about 20 years and he was the editor of the group that wrote the first primer for ME/CFS for clinicians. I was working at the time, so I wasn’t really involved, but in 2008, a few volunteers that had been keeping the organization running for many years sent out a message saying that they were exhausted and needed help, and asked if there was still a need for this organization because they couldn’t keep it up by themselves anymore. They invited my husband to meet, and I went with him. Well, the group pretty quickly decided that there was still a need for an organization like Mass CFIDS, and so we needed to keep it going. So my husband became the chair of a planning group which worked on deciding how we were going to move forward, and one of the priorities they came up with was to update the website. There was a website then, but it was using very old technology and no one had the passwords anymore, so it was decided they needed a new one. At the time, I was working at a large organization as part of the website group, so they asked if I could help with the CFIDS website, and I said yes. So that was really the beginning of how I got involved, and we put the website together over the next year and managed to transfer a lot of the information that was still relevant from the old website over to the new one. So I got to know a lot of the people in the organization and just became really committed to the work. My husband then became the President of Mass CFIDS and served for four years, and I helped him a lot during that time because we would talk about the agenda together and I would take notes for him at the Board meetings, so that was another way I got very involved in the organization. When he resigned from being President, no one stepped forward from the group, so I said, “okay, I’ll do it!” So that’s been the story for the past few years of my life.

Can you tell me more about Mass CFIDS, and about the current initiatives the organization is involved in for advocating for ME/CFS?

Mass CFIDS was started in 1985 as a network of patient support groups. This was back before there was an internet, so it was hard to get information about ME/CFS. So really it was a way of supporting patients and letting them know that they weren’t alone. There was a printed newsletter that we did for a large number of years that went to about 1,000 people, and it distributed a lot of information about ME/CFS, or what was then called CFIDS [Chronic Fatigue Immune Dysfunction]. Speaking of a name change, we will actually be changing our name this month. We’re the last people using the term CFIDS, so we’ll be changing the name of the organization to the Massachusetts ME/CFS and Fibromyalgia Association. As a state level organization, we provide help and support to ME/CFS patients in Massachusetts. We help them directly in giving guidance on disability, and we keep a database of healthcare providers in Massachusetts that are at least open to ME/CFS, and we can provide those names to patients. We also have three in-person support groups, and we’re about to start a virtual, online peer support group, which we’re very excited about. We also provide at least one opportunity per year to get people together at our annual event in November. We’ve also started some highly local informal gatherings where a patient in a particular town will invite other people in our database to come and have tea or an informal supper and just meet each other. We just started that and it’s been really well received.

For advocacy efforts, we do congressional action at the state level. We are in contact with every single one of our Massachusetts Federal US Representatives and our two State Senators. In November, all of them signed a statement of support for ME/CFS patients and for more funding from the Federal government. We also provide good Massachusetts level support for national advocacy actions. For example, SMCI organized the advocacy day in May, and we had five meetings that were organized by them, and then the following day we organized our own meetings with the other six Massachusetts congressional offices. We started a big effort this fall to increase public awareness in the state. By public, it’s not only general public or patients, but we also wanted to target healthcare providers and local health officials. So we have had a number of screenings of Unrest, and there was a big one recently at Cooley Dickinson Hospital in Northampton, MA. We had a lot of healthcare providers and school nurses attend. We have been working with school nurses for a number of years because they’re the gatekeepers to kids with ME/CFS and we’re lucky because in Massachusetts, all the school nurses are employees of the State Department of Public Health. So in March we did a major showing to the Massachusetts DPH here in the Boston area, and we had about 150 employees of the DPH there, and a few who provide direct services to patients and a lot of school nurses. We were happy to have Jen Brea speak on the panel at that event. We also did a showing at the Massachusetts State House, and we had representatives from 40 different legislative offices at the state level who came to see Unrest and hear a panel discussion. That was also done in support of the telemedicine bill, which is going through the Massachusetts legislature right now. We’re involved in supporting that bill. One of the things we did this year that we haven’t done in a long time is we hired someone to help us organize all of these screenings across the state. We have a small number of volunteers who can work on organizing events, and we realized we couldn’t do what we wanted with that few people. So we hired Rivka Solomon, who is a really experienced advocate, and also a community organizer and ME/CFS patient. That was a big risk for us to spend money, but I think it really has paid off.

The last thing we’re doing is a little trial, sort of. We put an online survey together asking ME/CFS patients what their experiences were getting coverage from their commercial insurance companies, not including Medicaid or Medicare. We had around 180 responses, and there’s a page on our website that summarizes the results, but it’s clear that many of them are not providing good care for patients with ME/CFS. As far as I know, that’s the first exploration into this particular aspect of care for ME/CFS patients. It’s hard enough to find a doctor, and then to find out that the ME/CFS specialists won’t take insurance, is another blow to patients. So we are one of the few really active state groups. In the 90’s, there were several really good state groups, in Connecticut and New Jersey, and others. Many are not as active anymore, and I think through the resurgence of advocacy, some groups are getting organized, but we would kind of like to be a model of what a state group can do and show that a lot can be down at the state level. 

That survey sounds really interesting. And it sounds like you really have been able to bring awareness all across the state to a lot of different groups of people. Can you tell me more about other roles you have had, such as with CFSAC and the US Action Working Group?

So as the organization Mass CFIDS, we participate in other national efforts, like the CFSAC. We are a non-voting liaison organization represented there, and we have people who work on the various working groups at CFSAC. I’m very involved in the Medical Education Working Group. And we made a presentation a number of years ago at CFSAC as well. Separately, we participate in the US Action Working Group, which is another group of advocates from all over the country. US Action Working Group fills a niche that otherwise wouldn’t be happening, which is to coordinate action at the state level and make them consistent, and to help people in different states who are in different stages in their advocacy, to kind of support them and help them learn from each other. Anyone can sign up to participate in that, and we have a website so people can join through the website. It started in late 2015, and I’ve been serving as Chair of that to keep it going. We now have about 60 members, and we have a monthly call. What we do is share what we’re doing in each state, with members from about 15 different states right now, and we’re trying to get more people involved from different states. If we can get local action at the state level but make it consistent and learn from each other what works and what are interesting ideas to pursue, and what’s getting results, that’s a good way to spread advocacy from the bottom up. Frankly I think we’re kind of tapped out at the federal level and we’re doing all that we can reasonably do, so now the action has to be more at a local level. So that’s what the US Action Working Group is doing. So we’re actually involved in a lot of different advocacy. 

That’s great that Mass CFIDS is approaching advocacy at so many different levels. In your opinion, what does it take to be a good advocate for this disease?

There are so many ways people can advocate for this disease, and I think there may be different roles for healthy people and allies than for patients. Patients continue to inspire me every day, and in spite of severe illness in many cases, they’re right in there doing the advocacy work that everyone is doing. It’s amazing how much people can accomplish despite the limitations of having ME/CFS. I am just so honored to be part of this community.

There are roles for healthy people too, and it’s very important for people who don’t have this disease to be active I the community. They can organize groups and run organizations, which is difficult for patients to do because they’re in and out of being able to function. Organizing events and speaking at the events are things that healthy people can probably do more reliably. Patients who are sick just have to take breaks and can’t always be there when they need to be. Traveling, like going to DC for example, is very difficult for patients to do but healthy people can do that. We need healthy people to help out! I’m honored to be able to contribute in that way. Parents of kids who have this disease have been wonderful allies as well, because it’s their children. They take time from full-time jobs to take on some of these larger advocacy initiatives, and that is really inspiring. 

You were a cell biologist at one point in your career. As a former scientist, what is your overall impression of the ME/CFS research field at present?

Well I have long wondered why scientists are not flocking to this field, because it’s such an interesting and complex puzzle. So now it’s really heartening to see scientists, who have these wonderful tools that they can use, start to apply those tools to ME/CFS. It’s great that there are researchers in so many different aspects of the illness that are active. We know sleep researchers, immunologists, geneticists, exercise physiologists, and metabolism and GI people, and it’s just great because all of those are aspects of the illness. They’re important symptoms and things going on in the body, so to see people attacking the research on ME/CFS from all of these different directions is really great.

I have to say, when we visited JAX and we got a tour of the lab, it was all I could do to leave! I wanted to grab a coat and stand at the bench, and say “what can I do to help?” I didn’t realize what a pull I still had towards actually doing the science, and it was very fun to be there and see everything going on. That was also very inspiring. 

Is there any current research that makes you feel hopeful for the future?

There are breakthroughs now in so many areas, but to me the most exciting thing is researchers in different fields starting to talk to each other, and break down the barriers of communication. That has really slowed down science, and meaningful research in ME/CFS has been really held back by that whole scientific paradigm. So the fact that now researchers are talking to each other, especially coming from different fields and aspects, and sharing their results and getting new ideas from each other, is exciting. In my opinion, knowledge just doesn’t come from individual lab results, but from bright people talking to each other and thinking together about what it all means. ME/CFS is a very complex disease. If there was one simple answer, I think we would have found it by now. We are one body after all, not a bag of individual systems, and that’s a perspective that’s been missing over the last 30 years and now it’s starting to come together. So the most exciting thing for me is the collaboration! The NIH collaborative centers, where collaboration is built in, plus OMF who really pioneered that on the private funding side, are great. We know some researchers who have reached out to other researchers in this field, and they have been brought into active collaboration. I don’t think it takes specific NIH funding, it just takes willingness, openness, and reaching out to each other. That makes me the most hopeful because I think it’s the way we can make the most progress.

That’s so true! I think that a lot of people from different fields are starting to think about how different systems work together in the body, and really collaborate with each other, which is so great. Do you have anything else that you would like to add?

I just want to talk a little bit about the research that’s going on in the Boston area. We have felt for a long time that Boston is such a medical mecca, but it’s a desert in terms of ME/CFS. There are no clinicians, there have been no researchers, with the exception of Dr. Komaroff. But that is changing now, and I think we’re really seeing a new wave, which is great! There’s a new research center under Ron Tompkins at Mass General that the Open Medicine Foundation has announced, and it’s going to be very exciting. I know it’s just getting organized so there’s nothing to report yet, but I know he’s reaching out to others in the area. We’re also very excited to have Dr. Unutmaz come and speak to our group at our annual November meeting, and we have an informal researcher forum that’s going to happen in the morning that same day. We’re hoping to have researchers come and meet the people from the Boston area. Hopefully Dr. Tomkins will have identified a couple of scientists and they’ll actively be working. It will be a chance to begin to build relationships in a local community of researchers here in the area. It’s something we have been needing and wanting for a long time, and it’s finally happening!