We are pleased to present Alan Gurwitt, M.D, who is an ME/CFS patient, advocate and  physician, in the latest “People in ME/CFS Research” spotlight. Dr. Gurwitt has a background working as an adult and child psychiatrist, and has been suffering from a mild case of ME/CFS for over 30 years. He also previously served as the President of the Massachusetts CFIDS Association, and has participated in countless advocacy initiatives over the years as a member of the organization. Dr. Gurwitt had visited Derya and me at Jackson Labs several months ago with a group of patients and advocates from Mass CFIDS. Keep reading for the full interview! 

Hi Alan, thank you so much for taking the time to meet with me! You’re a psychiatrist. Can you tell me a little bit about your medical background?

 Hi Courtney! So I’m a retired adult and child psychiatrist. I’m 87 years old, so I’ve had a lot of experience over the years in psychiatry. I trained at Trinity College, and then I graduated from Yale School of Medicine. Except for an internship in New York, all the rest of my training was done in New Haven, Connecticut at the Yale Department of Psychiatry and the Yale Child Study Center. I’ve done a lot of things for many years. For seven years I was the director of the Clifford Beers Clinic in New Haven, which has a very rich history. Clifford Beers was a man who in the early part of the twentieth century had a severe psychiatric breakdown and was hospitalized. When he got better, he formed the goal of organizing a mental health organization, and then he opened the first one in Connecticut in 1908. That went on to be the first state mental health organization, and then he formed the National Committee for Mental Hygiene. So he had a big impact, and I served at his New Haven clinic, which by then was a real child guidance clinic. It was an invaluable experience. Before then, I was in the army for two years under the Berry plan, and I ran a child guidance clinic in Germany at a large medical hospital. I always enjoyed working outside of a strict hospital setting though, more in community settings. I had quite a bit of experience in that as well.

I should mention that I also trained as a psychoanalyst for adult and children, and I took what’s called a rotating internship after medical school. In those days, you didn’t start with an internship in psychiatry. Instead, you did what were called straight internships in either medicine or pediatrics, or you did rotating internships, where you spent a certain number of months on each of the major services. I found that the rotating internship was extremely helpful, and I think the lack of something like that now is a major problem with the medical field. I don’t think psychiatry residents should go directly into psychiatry in their internship year. I think they need more medical training. The lack of medical background, not just with psychiatrists but with other medical professionals as well, is harmful to their patients because they don’t have as broad of a background once they start practicing.

Can you tell me about your own personal history with ME/CFS, and any issues you faced in getting a diagnosis and finding treatment?

I came down with a full-blow case of ME/CFS in August of 1986. I don’t remember the exact date like many people do. It’s actually quite interesting because our Massachusetts CFIDS organization did a mass survey and found that the majority of people who had an abrupt onset remembered the exact day that they became ill, even though the causes may have been different. Anyway, we had a vacation home up in New Hampshire, and in 1985 and 1986 I was working on our field up there, and we had a lot of poison ivy. So I used a poison ivy toxic chemical, observing all the rules, but after getting back from New Hampshire that late summer of 1985, I suddenly for two weeks had a lot of difficulty sleeping, which was new for me. And then it just abruptly went away. The following year in 1986, I used the same chemical, and two weeks after that was when I came down with ME/CFS. It took me years to make the connection, but what I realized was that while it may not have been the entirety of what caused the disease, I’m sure now that those two episodes of exposure to toxic chemicals were the main factor in me becoming ill. Toxic chemicals have not been regarded sufficiently as a beginning to ME/CFS disease, as I certainly think the main issue is infectious, but it certainly was for me.

In terms of getting diagnosis and treatment, there was hardly anyone in the country who knew about this illness. There was one guy in Massachusetts who was an internist affiliated with the University of Massachusetts, and he knew something about it, and he diagnosed me. I’ll never forget his clinic. It was filled with people who were anxious and trying to figure out what in the world they had. He had a large number of nurses because they had such a large clinic, and he did a great job. Getting the diagnosis was very helpful, though there wasn’t much that could be done about the disease and there wasn’t much literature on it. But it helped me because I was starting to see my own patients in my practice who clearly had the disease, and so I was starting to diagnose them. My case was mild so I could still work, and I was learning as much as I could about the disease so I knew what it looked like and what they were dealing with. I saw one or two cases in New Haven, and then I saw a larger number in Hartford after I moved my practice. I’ve long wondered if the fact that I had the disease enabled me to make the diagnosis in others and help them. I wonder if in a way my life mission was set out for me by my medical background.

So it was very hard at that time to get a diagnosis and get treatment, but I was lucky to have a doctor who was a real pioneer. Before 1970, ME/CFS presented mostly in the form of epidemics. There were over 70 epidemics in the course of the twentieth century all around the world. A major epidemic occurred in 1955 at the Royal Free Hospital in London, where the medical school had to close for three months because so many of the faculty and medical students were affected by it. It was a very closely studied epidemic and the name ME came out of that study. For the next 15 years, it was considered to be an organic illness. Then in 1970, two British psychologists published an article on what they called epidemic hysteria, saying that no, this was not an organic illness, it was really a psychosomatic issue and a sort of hysteria. And that started the ball rolling in the UK, and we’re stuck with it now. That’s why most physicians in the world think of this as a psychosomatic illness. It was a terrible tragedy, and a huge error on the part of medical people that still plagues us.

As a psychiatrist who has done a lot of work to advocate that ME/CFS is not a psychological illness, can you talk a little bit about your views on this, and how your medical background has influenced your view of the disease?

When I became ill, I had gone through psychoanalytic training and I knew myself reasonably well. It seemed to me that this illness I had was not a psychosomatic illness, however that was the medical thinking of the time. There was a faculty member at UConn Health Center actually, who was part of the field of people who though that the disease was psychosomatic. He gave a talk to the Connecticut Medical Society about this disease, and I attended the meeting. I thought it was utter nonsense, and I said so. I didn’t make myself popular at the time. I said I doubted very much that this was a psychosomatic illness, and that any psychological symptoms he was seeing if at all were secondary, and he hadn’t in any way indicated in his research whether the psychiatric symptoms occurred before the onset of the illness of afterward. He was not happy with me, and some of the audience members were puzzled because they were hearing two different views and didn’t know what to make of it.

So my goal at the time was to learn more about the differences. I gave a talk at the Institute of Living in Hartford, which was a world-renowned psychiatric hospital at the time. In the audience was an obstetrician who after the talk came up to me and told me he had been ill. It was absolutely clear from the symptoms that he had ME/CFS. He was a member of a fairly large obstetrical group in the Hartford area and as he became more ill, he couldn’t do his regular work. He couldn’t be on call without having major after-effects. Other members of his group were not at all patient with him and were very critical of him and didn’t believe that he was ill. He became very depressed, and a couple of months after I left Hartford, he committed suicide. That was my first experience that people with this illness, especially when they’re not believed by their physicians and their friends and family, have a terrible time with this illness. Secondary depression sets in, and it’s dangerous. It’s clear that I was lucky enough to know myself and my health history to realize that it was not psychosomatic when I was diagnosed, and that it was an organic illness, and I had to do something about it. The combination of my medical and psychiatric background helped me realize that, and started my advocacy work.

It really is incredibly sad that people with this disease struggle with getting loved ones to believe them, and can feel so hopeless. In terms of advocacy, you are the former President for the Massachusetts CFIDS/ME & FM Association. Can you tell me a little bit about some of the advocacy work you have done for Mass CFIDS, including the pediatric primer you worked on for ME/CFS?

Starting around 1988, I was the President of Mass CFIDS for four years. Then Charmian took over, because she had been very helpful to me when I was President, and she already knew a lot about the disease. The Mass CFIDS association was a godsend. The leadership varied, but there was finally a place for people with the illness to gather around and learn from one another about the disease. Very little was published at that time, but now there was a place to go to in Massachusetts that was extremely helpful to people who were quite ill. In 1985, when the association was formed, they were doing some of the same things they are doing now. It was also a place for referrals to physicians who knew something about it. Since there was no information for patients or physicians that was readily available, we took it upon ourselves to write a primer. It took us about a year, but we had a lot of nurses and physicians that were members of the association, and so we produced the first primer in the world in 1992. We put it on a rather primitive website, but it went all over the world. We got calls from Italy, Spain, Germany – as people heard about it and found it online, so it was an active year. It was the only thing available at the time, though looking back it was kind of primitive. That sparked our interest though in the importance and usefulness of primers at that time.

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

Courtney, it was very bleak for decades. It was clear that the NIH, which occasionally had meetings about it, was just going through the motions. They didn’t believe in it, and it was because there had been a lot of advocacy, that they went through the motions. People got more and more upset and angry, and there was a sense of futility that NIH didn’t believe in it. The CDC was still giving out wrong information, and the sense of frustration went on for years. It wasn’t good for the patient population either, because they didn’t work together, and they competed with one another and shot one another down. It was a bad scene. Finally, a group of advocates got together nationally, and the practice of competing in a destructive way mostly stopped, and that’s when the advocacy began to have some impact. There were some heroes, like David Bell, the doctor who was at the center of the 1985 Lyndonville outbreak in New York and stuck to his belief that this was an organic illness. There were a few researchers who thought this was an interesting thing to study, and gradually over time outside of government agencies, there was evidence being found that this was indeed an organic illness. There were so many questions that were unanswered, but the accumulation of evidence meant that you could begin to patch together what this illness was about.

Things changed after the one and a half year study by the Institute of Medicine and the report from it that was issued in 2015. It said that this is really an organic illness, and the psychological series was nonsense. It said that patients have been denigrated and treated in an unprofessional manner, and not enough research was done, and so on. And about eight or nine months after the publication, NIH announced that they were getting involved. Francis Collins knew many of the people who were doing the pioneering research, and so he was under a lot of pressure and finally changed the course of things at NIH. It didn’t change the course altogether, as there were still many people at NIH that were primarily interested in the psychological view. But I became very encouraged with the beginnings of real research at the NIH. I’m not as encouraged now. While it’s clear that although the amount of funding for the disease has increased, the amount of money is still miniscule in terms of the needs of the illness. So my optimism has been tempered by the fact that we have a very long way to go. We need to quadruple the amount of money that’s available for research. The private monies that have come into the field from organizations like SMCI and OMF add to the fact that a lot of research is going on. So I’m disappointed by the current funding situation, but I remain optimistic for the long run. 

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

Yes, I think the studies being done at your organization, Columbia, and Cornell are all leading us in the right direction. I was very positively impressed by our visit to your lab, and thank goodness you guys are in the field. I’m also interested in the mast cell hypothesis, the cytokine profiling that’s being done in a lot of places, and the renewed interest in Epstein-Barr Virus and the permutations of the virus. In the beginning, that was the one mystery that was being looked at, that it had something to do with EBV, but the early research didn’t prove anything. And now we have a whole new group of facts, and we might find it has a lot to do with it. I think it has multiple causes though. A lot of it starts with an infection, but as I mentioned, it was toxic chemicals that triggered it for me. That’s a field that needs further research. 

Do you have anything else that you would like to add?  

Yes, there’s one simple thing that the government could do and they’ve not yet done it. They’ve made a lot of motions to dig in and start research, but they have not in any convincing and significant way said to the US population, this illness is an organic illness. It leaves people in a quandary. I’ve given three talks to medical groups in the past few years, and it’s very hard to convince them that it’s not a psychological illness. I think there has been some movement, but to convince most physicians and to teach them about diagnosis and management, is a big challenge. So the government really just needs to say that this is an organic illness. It would make a big difference!

It definitely would! Thanks for taking the time to talk with me, Alan!