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Dr. Vivian Pinn Talks About Chronic Fatigue Syndrome (CFS)

The following is a transcription of an interview with Dr. Vivian Pinn, head of the Office of Research on Women’s Health (ORWH) at the National Institutes of Health (NIH). Dr. Pinn took the time in August of 2005 to address CFS community concerns and lay out her vision for the CFS program at the NIH.

Dr. Pinn grew up in Lynchburg, VA, attending segregated schools. As a child, her grandparents struggle with diabetes instilled within her a passion to be involved in health care. She received her bachelors degree from Wellesley College in 1962. Dr. Pinn graduated from the University Of Virginia School Of Medicine in 1967, the only woman and minority in her class.

Dr. Pinn has taught pathology at Harvard Medical School and Tufts University. Dr. Pinn moved to Washington D.C. in 1982, becoming the first African-American woman to chair the pathology department at Howard University. In 1991, Dr. Pinn was named the first director of the Office of Research on Women’s Health. By 2002, Dr. Pinn assumed responsibility for the chronic fatigue syndrome program (CFS) within the Office of the Director.

Dr. Pinn has produced an established and respected record as a pioneer in women’s health, receiving numerous awards and honors. She has served as the president of the National Medical Association, and she was inducted as a Fellow in the National Academy of Arts and Sciences. She has spoken widely on medical research, gender, and racial matter pertaining to medical research and clinical care. In May 2005, Dr. Pinn returned to the University of Virginia to deliver the commencement speech before 20,000 graduates and their families.

All materials at the CFIDS, including this interview, are freely available to any organization, website, support group that is interested in CFS advocacy and research upon request.

Craig Maupin - Dr. Vivian Pinn - August 25th 2005 3:00 p.m.

Maupin: What influenced you to pursue a career in medicine?

Dr. Pinn: They tell me that when I was four years old, I said I wanted to be a pediatrician. I think it was because I had a lot of relatives who were ill, especially grandparents and others. For some reason, I just enjoyed being with them. So, I decided that I wanted to be a doctor. When the doctors came to visit, they always seemed to feel better, and I liked that idea -- very naïve early beginnings. But, with everything that happened since, that is really how it started. I just kept thinking about it [a medical career] and oriented everything I did towards medicine.

My grandmother had diabetes, and I used to give her insulin shots. My father taught me as a child to do that. Only my aunt Vivian, and I, and my father would do it. Everybody else was scared of the needles. I guess it short of seemed silly now, but it seemed like a big deal back then.

Maupin: You have an incredibly inspiring life-story and career. You came from a family of modest means, and you were second African-American woman to graduate from the University School of Medicine. Has your background as a pioneer better enabled you to deal with women’s health issues, and CFS, at the NIH?

Dr. Pinn: When I was coming up, issues related to minorities and issues related to women weren’t given a lot of direct thought. They weren’t taken seriously. They were issues that I thought should [be taken seriously]. I go back to my experience with my family and my mother.

When I came here to head the office [Office of Research on Women’s Health], one of the things I was told by several people that was my biggest challenge, was going to be to get the scientific community to take what we were doing seriously. I never forgot that. My biggest challenge has been to make sure that we were not seen as just being a politically correct office, but everything we did was science-based. So, I have made a real point from the very beginning of indicating that this Office will pursue science-based initiatives.

There are still issues that we have to deal with that not everybody may take seriously --- looking at chronic fatigue syndrome, looking at many other things, like PMS and other issues. There have been a lot of issues related to women’s health, or related to health in general, especially things that are more prevalent in women that haven’t been always taken seriously. That is why we need to pursue the scientific basis for them. That is how one can overcome them and deal with those who don’t want to believe such things exist.

Maupin: That is a message I think resonates within the CFS community. Right?

Dr. Pinn: It is very true. That is why we try to make sure that with CFS, or anything else, that we want to point out that we are pursuing the science. It is very important. There are things that we hold conferences on -- that we write textbooks on -- that when I was in medical school, their existence was doubted.

But, it takes attention. We have to explore -- either prove it or disprove it. That is what research is about. That is just my theory. I am just giving you my thoughts. I am not speaking for the NIH. I am speaking for me.

Maupin: You have shown a commitment to CFS during your tenure at the Office of Research on Women’s Health. Why did you want to take on the CFS program as an additional responsibility of the Office of Research on Women’s Health?

Dr. Pinn: Actually, it is very interesting how I first got interested in chronic fatigue syndrome. When I first came here one of the first things we did was to publish the proceedings of what was the very first research agenda for women’s health for the NIH. This agenda was from a meeting that was held just at the time my appointment was announced, and we did have that published.

And, I never forgot, when we sent it out, I got two letters. One was that we had not paid any attention to HIV or AIDS in this agenda for women’s health. This was ‘91 or ’92, and at that time it [AIDS] was not thought of as a woman’s disease. And, the other was a letter saying, “I want to point out to you in your new research agenda you have not mentioned chronic fatigue syndrome, and that is a disease of women.” I’ll never forget that.

So, from that day on, when I did talks about our research agenda, I always pointed out that this points out that science changes and issues change. With that in mind, when I was asked if we would take that [CFS] into our Office, I thought, 'Why not?'. I never forgot the oversight, and it really made an impression.

I see that as the purpose of our office, not to dwell on the topic of women’s health --and when I say women’s health, we do focus on conditions that do affect both men and women. If it is something where we know there is a difference between men and women, in the prevalence or effects, then I can justify taking it on. One of the things that this office can really do is pull people from across the NIH and really put together trans-NIH initiatives. Obviously, this illness really needs Trans-NIH interdisciplinary attention because there are so many facets to it. So, I actually thought it was sort of a natural home.

Actually, I had offered to work with the Trans-NIH committee that existed prior to that [CFS] being given to Donna Dean. Someone had called me saying they needed to strengthen their efforts and would we be willing to help. I said “Sure”. Obviously, Donna [Dr. Donna Dean] is very good, and she was in a good position being in the OD [Office of the Director] also to take it forward. So, since I had almost taken it on before, it was fine when Dr. Kerst team, and Donna, asked if I would take this in our office.

But, I did it with the commitment that they would let me hire Dr. Hanna to come to this office. I needed someone who was really familiar with the issues and the science to help do it. I couldn’t just take it into our office and not have someone who couldn’t give it the attention it needed. We have taken on lots of responsibilities. This is the first time I have really gotten the commitment along with the responsibility.

I have her do a lot of other things also. Her primary responsibility is chronic fatigue, because I know she has worked in this area a long time, is committed, and understands it. So, I can trust her to handle this issue. Obviously, it is a sensitive issue, and it really takes someone to handle it -- if we are going to be responsible for coordinating it throughout the NIH as well as relating to other parts of the DHHS. I really need someone who understands the history of what has happened. I needed someone who really understands the science and is willing to give it the commitment. I am not sure many people recognize that, so that is really how Eleanor came to this office.

Maupin: Was the transfer of CFS to the Office of Research on Women’s Health an admission that CFS, while it is not an illness that exclusively strikes women, is an illness that predominantly strikes women?

Dr. Pinn: If we just looked at things that were only in women, we would just be looking at reproductive issues. We look at conditions, like chronic fatigue, that seem to more commonly affect women, but affect both women and men. Part of the challenge is to determine why this happens -- like with lupus, which affects women more often than men.

Maupin: CFS funding has fallen from 1999 to 2005, a period of time in which the NIH has received hefty increases from Congress. Is this evidence that the Trans-NIH system for funding CFS has been a liability, because institutes have seen CFS as a secondary responsibility?

Dr. Pinn: No. The budget of my office did not go up at the same level. In fact, we were level for several years and got no increases either. So, I think you have to realize that an increase for the NIH did not mean that every institute, every center, every program, or every disease got an increase.

The increases were handled variously, depending on programs, and priorities, and different Congressional directives. You can just use my office as an example. If you look at the doubling of the NIH budget, my budget did not double. There were many years when there were large increases where we saw no increase. How those decisions were made by Congress, and by the director, and the secretary, I can’t say.

You have to recognize that it’s not so much what we have, but also what is sought. We have had that PA [program announcement], and we have not had that many applications come in for that program announcement. So, if we had more applications come in under that program announcement, then we would have seen the dollars escalating even more. Additionally, I had nothing to do with the centers [the closings of the [CFSCRC].

It comes back to the language I used before – scientific opportunities. We would have seen an even greater increase in funding if we had seen a greater response to the program announcement. It is very clear that one way to increase funding is to bring about attention to the scientific opportunities, and I think we have to keep focusing scientists and researchers on the scientific opportunities.

I also know that researchers are more apt to take the time to focus on an area, or write a grant application, if they think there is going to be money to fund it. That is why the RFA [Request for Applications] is important. With the RFA, people know that for a finite amount of time there is a certain amount of money available that is directed toward a specific topic. So, it kind of justifies to researchers taking the time to pursue a topic, and that is what I wanted to do with CFS. Already, we are hearing so many applications are coming in, so I think it has worked.

I know that in the chronic fatigue syndrome community there was a lot of impatience. I can’t tell you how many strong letters I got, not only from members of the advocacy community, but from Capital Hill, saying --- and this didn’t make me happy -- you know, “Vivian Pinn said in October that this RFA is coming out, and why didn’t it come out.”

If it is going to be effective, we really have got to get the institutes behind it. We wanted first have the meeting summary together, and then we wanted to put together the RFA based on the summary of that meeting. So, with that logical sequence, we were in better position to get institute support and get the buy-in of the scientific community. And to me, that made more sense. So, I will take the stabs and the knocks I got because it was delayed. The bottom line is that I feel much more comfortable with what we have done, because we have done it with a strong science base.

If there is anything I think that CFS needs, it is a strong science base -- for those who doubt it exists, for those who doubt it exists but don’t know what to do with it. I think we really need the best science possible to address this complex issue that we don’t understand. I really like being able to give it an interdisciplinary focus. That takes time. You can write an RFA and put it out there, but if it is isn’t good, it is not going to go anywhere.

We need to take a reasoned, responsible approach. We needed to do it the right way. Right now, from what I am hearing (and the deadline is not up yet), I think we are over 30 now. That is far more than we ever saw for the program announcement.

Maupin: If the NIH is not getting enough applications for research funding, could that possibly be caused by the public apathy that surrounds CFS?

Dr. Pinn: You know that could contribute, but I see other things that have lots of stigma attached to them that people write applications for. I think what influences that more than anything is a concern by an investigator. You know it takes time to write a research grant, plan the budget, dig out the science, do your pilot work, figure out what you are going to do, write it up, and then wait for it to be reviewed. I think there may be some apathy, but I am not sure investigators really thought there was a commitment to funding because there was not a lot of exciting science that was talked about relating to chronic fatigue syndrome.

And I think now, the workshop accomplished that. That is why these science meetings are so important. We are looking at this and then restating what some of the questions are that need to be addressed. Then, that spurs people on to think, or rethink, about looking at research in this ---getting new ideas -- sort of getting stimulated to the areas to study and to pursue.

People aren’t going to want to take the time to write an application for a grant if they think it isn’t likely to be funded. If they know that we have some money set aside to do this and we are going to be making awards, they are more likely to come back and invest time and energy to making grant proposals. I can’t say whether it is lack of concern or apathy… or just concern about investing time in an area where there has not been a lot of benefit for research in the past

The fact is that we have really been stressing an interdisciplinary approach for a multisystemic disorder, rather than having a compartmentalized office --- something allergic, something immunologic, ect. We are really looking at all of the aspects. That has been one of the central themes of my office.

I think we went through the same kind of argument with the breast cancer advocates back in the early 90’s before they got their big increases. I can remember they were very upset over the budget figures for breast cancer research, because they felt that many of the things included that didn’t say ‘breast cancer’.

I mean just look at how later …the breast cancer gene was found and other things which would not have been labeled specifically breast cancer research. That is why I think with all the different approaches to chronic fatigue syndrome and research that is related; hopefully we are going to get some answers.

We have to try to make sure that the institutes are willing to invest money in those areas that need to be addressed that aren’t being [addressed]. Then on the other hand, we need to make sure the scientific community is going to generate the scientific interest, the scientific protocols, and the questions that need to be addressed. It is a two way street. That is an important concept.

Maupin: In 2002, Laura Hillenbrand, the author of Seabiscuit vividly described life with CFS. Are you familiar with her story, and if so, what were your thoughts as you heard it?

Dr. Pinn: First of all, Seabiscuit was a wonderful story. I could see the emotion that must have been invested in doing it, considering the fact that she was suffering from chronic fatigue syndrome.

I watched her interviews on TV. And, I know that she was often tired. The bottom line is I am very impressed with what she was able to accomplish. At the same time, she was demonstrating why we really need to find answers for people like her or anybody suffering from this condition, so they are not hindered from all the contributions that they could make.

I really admire what she did. I am sure there are lots of people who didn’t know much about it, or didn’t think much about it. The press and the publicity that she got related to Seabiscuit also brought attention to chronic fatigue syndrome. I think it was a sort of a media marvel. I think it educated a lot of people. I am not sure that if we tried to do a scientific press release, it would have accomplished as much. People could really relate to it, because they could relate it to her.  

Maupin : How important is communication, and a strong, broad joint relationship between the NIH and the CFS community to the future success of the CFS program?

Dr. Pinn: I think it is extremely important. It is vital. If we are not on the same wavelength, working for the same thing, we are not going to be successful. We don’t need to be diverting energy responding to things that could be better understood with better communication, just as the advocacy community should be expending its efforts in ways that are really going to help advance attention to chronic fatigue syndrome.

I think that can only come about if the issues are clear and better understood. That happens through better communication. And, that means listening -- both sides. We have to listen to the advocates. The advocates have to listen to us. It shouldn’t be a pull-push competition – a competitive kind of thing. It has to be a working-together kind of thing.

Many of the things that we have been able to move forward in women’s health, have come about because we have had communication. We have worked together to get what we need. I am looking for that in chronic fatigue syndrome. I think we are making progress. We have a number of advocates that come and work with us.

I am here to promote the science and to do what we can in many areas, including chronic fatigue syndrome. It means our working together and working to advance the science, because that is what the NIH is about. We need to be working together.

Maupin: In 2001, a high-ranking official at the NIH told a New York Times reporter that he believes CFS patients fail to achieve health because they “become so focused and phobic”. Are these comments a sound justification that for many in the CFS community to believe that subjective bias toward CFS has found a comfortable home across the NIH?

Dr. Pinn: I would turn that question around and say, “Is there any sound justification for any NIH official to make such a comment?” I don’t think there is. I can’t begin to defend the comment. I have no idea who made that statement, and I wouldn’t begin to try to justify it.

I go back to what I said a few minutes ago, which is that I think we have to work together. Just as with many other issues, if there is some that really don’t believe that there is a scientific basis for this disease. Then, they need to see what were are doing in research or want to do in terms of research – to prove or disprove some of the theories that are out there. Then, we can better understand why people are suffering.

Maupin: In 2004, the NIH chose 9 researchers for the inaugural Pioneer Awards. Remarkably, no women were chosen by the NIH to be worthy of recognition. Could you address that?

Dr. Pinn: The idea of the Pioneer Awards was a wonderful idea. I was not involved in the process at all, and I first learned about the awards later. I didn’t even know who won the awards until I started getting calls and emails from women scientists from across the country, as well as a number of men. There were men and women who were quite disturbed, and quite concerned, that not a single woman was recognized. I myself was a little amazed that could happen.

It did point out that this office will have to continue to make sure that the scientific community -- both inside the NIH and outside the NIH -- recognize the important contributions of women to science.

I don’t know how it happened. Somebody wasn’t paying attention. We certainly have many women who are fine achievers in science today. So, I don’t know who sits up there. I think somebody wasn’t paying attention.

Maupin: Is there a cultural tendency for illnesses which predominantly affect women to quickly be attributed to neurobiology and behavior of altered perceptions? Is the Office of Research on Women’s Health weighing in on this issue?

Dr. Pinn: That is not a new challenge. That is an old challenge. And, that is really not just in research but in terms of health care. One of the major things we have focused on from the beginning is recognizing that many complaints that women had were not taken seriously and were considered to be emotional, or related to hormones and emotions ( if you will).

We hear this, over and over, not just in chronic fatigue syndrome, but look at women who suffer from heart disease. Look at how many times you will hear about women who went to the emergency room, thinking they had indigestion or chest pain, and were told their problems were stress --- from not getting along with their husbands. And, the heart attack is missed.

We’ve had a long history of not having women’s complaints being taken seriously. When you get a condition like chronic fatigue syndrome that affects women (as well as men) like chronic fatigue syndrome --- where if it is not “clear cut” and you can’t run a test to make the diagnosis, that it is more one of exclusion --- it might be missed. And that is one of the challenges for us, in terms of women’s health, research, and the translation of results of research into clinical practice.

Yes, we are addressing those issues. We think that they are very important. Chronic fatigue syndrome is one of those that fall in that realm that hasn’t always been taken seriously. Too often, it is thought that whatever trouble is related to us, (meaning women) is thought to be related to our hormones or in our head.

On the other hand, we know that there are many mental health issues which affect women, that women are not getting help for. We’ve stressed so much ‘don’t say everything is going on in our head’ and there becomes sort of a stigma attached to mental health conditions. Our charge is sort of dual, to make sure people take women’s complaints seriously and not think it is ‘all in the head’, but at the same time to recognize that if it is something to do with mental health, those are recognized in the appropriate mental health context. Sometimes women or men don’t want to get help if it is related to psychiatry or mental health, because there is a stigma attached. There has got to be a good balance there.

Maupin: Why isn’t women’s health worthy of an institute with the authority to sponsor or fund women’s research? Would you ever consider such a change for the Office of Research on Women’s Health?

Dr. Pinn: I have actually not been in support of making the Office of Research on Women’s Health a center. Why? Because I think women’s health research is very important in all aspects of research. When looking at sex and gender issues, or looking at women’s health issues, these really should be the property of every aspect of biomedical research.

In other words, I think the ownership [of women's health research] belongs to all the institutes. If we get a center (or an institute) of women’s health, my fear is that it would be seen that research on women’s health should be going to the Institute on Women’s Health. That might let some of the other institutes off the hook in terms of focusing on conditions that fall within their purview. This office was really established as the focal point for women’s health research within the Office of the Director, to work with all of the institutes and centers. I think that is extremely important.

Various institutes have a mission to study these [illnesses], so why should we pull them out and go with much smaller focal attention in some small institute? That is our reasoning for not going to [the status of] an institute or center. There have been those who have wanted to push for it. I am just sure if we had and institute or a center, anything that came in to women’s health would get shelved to us.

I think it puts us in a much more powerful position to be central to the NIH, working across the entirety of the NIH to make sure the issue is addressed. The issue of funding authority isn’t going to make much difference if I don’t have that much more money. So, you know, so having the authority to fund doesn’t actually allow me to get more done.

And, it also means that I can defend whatever we do fund and say it is good science; because I can say it has been through the same types of peer review that any other research proposals coming through the NIH have been through. This really helps us to justify that we are doing good science. Everything is going through the same channels. Rather than giving me the authority to direct funds, I would rather you give me the authority to make sure that ten institutes are direct-funding projects.

Maupin: Recently, sweeping changes have been proposed to the administration and structure of the NIH. Purportedly, these changes would centralize power, allocation, and decisionmaking. Some are concerned about how these changes may affect the administration of women’s health at the NIH, or the CFS program. Should they be?

Dr. Pinn: We have seen the proposed language from Congress, and we have heard the discussion, but because nothing is clear, we don’t know what it will mean. So, I really can’t say anything positive or negative about it. I don’t have that information. It hasn’t been defined enough yet.

I do know that there is a law, the Revitalization Act of 1993, that calls for the establishment of this office. It gives us a mission: to address women’s health research and those issues that are related. That is addressed in law. So, unless the reauthorization bill withdraws that, we are in law. I am not as concerned, because I think we are in law.

Maupin: Looking forward, what are your short-term and long-term goals for the Office of Research on Women’s Health? What issues do you feel are the most important to women’s health?

Dr. Pinn: If we don’t continue to reexamine our priorities and reenergize our efforts looking for new and different ways to approach conditions that affect women, then, that is not good for the office. We are in transition from women’s health, to recognizing our focus on sex and gender issues. We are really focusing on the health of both men and women, because we are really are looking for sex and gender differences.

Our career mandate has two parts. One is to increase opportunities to advance in scientific careers ( to get recognized in programs like the Pioneer awards). Also, we have to promote and advance men and women being interested in doing research on women’s health.

I really wanted to go for an interdisciplinary approach many years ago, but it really wasn’t the time. But, now we have been focused on interdisciplinary research. As you look back at the women’s health movement in the early 90’s, in almost all the papers that were published, everybody talked… about the fragmentation of women’s health care. And, there needs to be more integration of health care and less compartmentalization.

If we could get people from across disciplines talking to each other, approaching women’s health from their various aspects…, it might also set up not only an understanding of multisystemic conditions and diseases across disciplines. We could also get people talking to each other to understand the importance of a multidisciplinary approach, a more integrative approach to women’s health care, which is what men need to have too.

We need to really look at all of those issues, from heart disease, to lung cancer, sports injuries, athletic tears. Why are some more prevalent in women than in others? Look at rheumatoid arthritis. I have a cousin who is a male who has very bad rheumatoid arthritis. Maybe I can do something to help my cousin with his rheumatoid arthritis, to understand what the mechanisms are and why we see differences.

Maupin: What goals, both short-term and long-term, do you have for the CFS program?

Dr. Pinn: Well, short term is to get some good research going, to really get acceptance, to get the scientific community reinvigorated. Long-term, I would love it if I could say that some of the research funded brought the answers that we need to understand chronic fatigue syndrome. My personal thought is that I am not sure there is going to be any one answer, because it is such a complex condition that affects so many different systems of the body. But, if we can begin to even unlock one secret --- to help us understand why it occurs, what can make it better, and how we can deal with it -- then I think we have reached some degree of success. But, that success only means that we are opening new doors of scientific opportunity. So, the short-term goal is to really get the science and the scientists reinvigorated in terms of research and to get scientific research going so we can get some of the answers we need.

And long term, we really need to provide the answers to and get the keys to unlock the secrets to chronic fatigue syndrome, so it becomes another one of those things that we write about in textbooks as something that used to just exist but now we understand. I don’t know if that will happen in my lifetime, but that is what the long-term goal has to be.

Maupin: When the history of CFS is written 50-100 years from now, how do you perceive yourself as playing a role in that history --- making a difference?

Dr. Pinn: What I am hoping is that is that as the history of CFS is written, that it will be recognized that within the NIH that the Office of Research on Women’s Health played at least some small part in trying to facilitate a reinvigoration of the science that hopefully will have led to giving us the information that will have led to helping us to understand chronic fatigue syndrome and to overcome it.

 

Note: The CFIDS Report would like to thank Dr. Pinn for making the time available to address questions regarding CFS and the NIH program.