“The ‘lucky’ thing about HIV is that those patients were dying. You don’t want people to die, but when people are dying left and right you can’t pretend they aren’t really sick.”

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Panel discussion in Berkeley yesterday after Unrest screening between Lily Chu MD, Ron Davis PhD, José G. Montoya MD, and David Tuller MPH. If I were organizing a showing in this space, this would be my dream list of panelists. Credit is due to the team who put this together. The overarching themes were of medical neglect, challenges in activism, and the stigma faced by doctors and researchers who are brave enough to fight for us. Overall the responses were as strong as could be expected from this group. It helped that the audience asked excellent questions.

These were the best parts:

“When I got into this at Stanford we were told that we should not see patients with chronic fatigue syndrome or chronic Lyme disease, and there was in fact a letter written that went out to physicians in the community so that these patients would not be referred to us. The day one, the day zero for me, was when I saw a patient like that and I just couldn’t stand seeing the suffering in that other human being. I think that ME/CFS is a test for human empathy and for what we physicians are supposed to be doing. We are trained allegedly to heal we are trained allegedly to bring down suffering and not to judge.” Montoya

“The biggest misconception we have made in medicine is the belief that the patients have created their illness in their own minds. I agree with the other panelist’s and with Ron that we are turning a corner. We have data that suggests there is an area of the brain that is clearly abnormal and we are in the process of trying to validate that as a biomarker. The data coming from several places suggests this is an overactive inflammatory disease. We cannot wait for the NIH to do what they need to do.” Montoya

“One thing that is a sort of horrible thing to say but the lucky thing about HIV is that the patients were dying. In that sense they were lucky, even though nobody cared about them. I’m saying this as a 60 year old gay man living in NY at that time. Nobody cared, but you couldn’t pretend people weren’t sick or they were malingering or didn’t want to go to work. You don’t want people to die but when people are dying left and right you can’t pretend they aren’t really sick.” Tuller

“We are still fighting this idea that people that are not really sick. Theatricality has had some progress.” Tuller

“A large fractions of the patients are seriously ill, homebound or bedbridden. They can’t go out to protest. That probably accounts for about half the patients. The ones who can, don’t look sick. We’re going to need to use a different tactic than copying the AIDS demonstrations.” Davis

“Need to take advantage of tools that were not available in the 60’s. Maybe one way to setup these protests could be through the internet as well. We had not even thought about facebook, our facebook page was an instant success. Then, the patients could reach us. Social media will play a role in this movement.” Montoya

“In the 80s when ACTUP came in the patients became experts in the drug development process. I really rely on the patients who are incredible at pointing out the flaws in the studies. Nobody pays attention to them as much because they are seen as crazy or hysterical patients and can be easily dismissed. Many of them are scientists themselves who happened to get sick. They have done incredible activism work just from their beds.” Tuller

“The patients do spend a great deal of time. I worry that patients can’t get access to the journals. They are closed access. That’s why we make a point to only publish in open access journals.” Davis

A member of the audience asked, “Do you have patients that are exploring homeopathy, accupenture, etc?” Montoya replied, emphasizing the importance of clinical trials.

“We are also worried about Chronic Lyme Disease. We are looking at those patients to see how similar or dissimilar they are from chronic fatigue syndrome.” Montoya

“A big reason there isn’t more research is the misconceptions people hold about this. We all come from research areas that were not ME/CFS. I originally researched nursing home quality of care. I have looked at how that field is looked at, how geriatric patients are being taken care of, and compare that with ME/CFS. There is a big disparity. Patients with ME/CFS are not taken seriously in the same way that older patients are.” Chu

“When I was getting my doctorate here, I was interested in doing research on this illness. Nobody was opposed to it but nobody was doing it at Berkeley. If you are in a doctoral program you can’t actually work on something nobody is interested in. If you say to somebody you want to study Chronic Fatigue Syndrome as an academic nobody will take you seriously.” Tuller

“I’m sure you’ve found this yourself Jose and Ron that nobody wants you to study this, nobody is encouraging you to do this. If you do it you are really on your own. You are on your own finding money, finding resources, finding support. I attribute this largely to the CDC naming it Chronic Fatigue Syndrome in 1988. It is impossible to get editors interested in this. As soon as I say Chronic Fatigue Syndrome, I can hear their eyes rolling in their head. Now, I just write my own stuff and post it rather than trying to get editors interested.” Tuller

“By choosing to study CFS, ‘it was once said that I was committing academic suicide.’ Montoya, in reference to his former supervisor. Full quote was covered in a Guardian article here:

“About 15 years ago, I started working with 10 patients who’d had their lives devastated by this illness,” says Montoya, now a professor at Stanford University and one of the world’s leading experts on the disease. “I had been able to help them, so I took my results to my academic mentor and he told me: ‘You are committing academic suicide. You’re turning your career into a mess.’” Months later, Montoya, was travelling to a conference in Paris with his mentor when the subject came up again. “There was a homeless man lying drunk in the street, and he pointed to him and told me: ‘That’s how you’re going to end up if you keep studying Chronic Fatigue Syndrome.’”

Montoya and Tuller repeatedly make the point that in medical research there is an element of disease prestige. It’s more prestigious to study things that are well known or kill you quickly. ME is gruesome, and the patients can stay alive bedridden or housebound for decades, having lost everything you would associate with life. Montoya has observed, “patients are trapped in that paradox where they are sick but they are not dying, but in my view, Chronic Fatigue Syndrome is another form of death because leading a life at 10% of your capacity is not living. The most common sentence I hear from patients who dramatically recover is, ‘thank you for giving me my life back.'”

Still, because the patients do not physically die, it is not as glamorous a job to help them as one where you are able to say that you saved lives. Researchers have an incentive to go into fields that have recognition like leukemia or HIV research instead.

Furthermore, it’s a struggle to maintain credibility in this field because ME is not recognized as a neurological disease by many health organizations, despite being classified as such by the WHO. Due to the lack of support and the stigma, academics who venture into this space risk their careers. I am grateful to those on this panel for taking this risk.

See the full discussion here.