Author’s Note: The Internet was in its infancy when Osler’s Web was published. I had never used it until I was on my book tour; I was seated before a keyboard in the claustrophobic stock room of a Berkeley, California bookstore and responded to questions posed by members of a large Southern California support group in real time. The interaction shines a light on patient concerns circa 1996. What’s interesting is how little these concerns have changed. The transcript appears below:
TOPIC: CHRONIC FATIGUE SYNDROME TIME
SUBJECT: ASK HILLARY JOHNSON
Hi, friends: Hillary Johnson, author of Osler's Web, will be a guest here all next week. You may begin posting questions for her now. Osler's Web is described as "a relentless, meticulous, and highly persuasive expose by a journalist who spent nine years investigating the medical research establishment's failure to take seriously chronic fatigue syndrome....a compelling, well-documented account," by Kirkus Reviews. It was released on March 27, and Ms. Johnson appeared on Prime Time Live and Good Morning America that week.
Hillary Johnson is well known to many CFS patients as the author of a two-part series on what was then called "chronic Epstein-Barr virus syndrome," published in Rolling Stone magazine in 1987, where she was a contributing editor. The series was nominated for a National Magazine Award. She has worked as a staff reporter for Congressional Quarterly, Woman's Wear Daily, and Life, and written for The Wall Street Journal, the Christian Science Monitor, Town & Country, Mirabella, Vogue, Vanity Fair, Tatler, and New York magazine, among other publications.
(Speaker) Welcome Hillary, and thank you for joining us tonight. We have been looking forward to hearing what you have to share with us!
Hillary Johnson (Speaker) I'm very pleased to be here.
(PRODIGY Member) You got some very candid interviews for you book, over the course of many years. How did you get all those people to be so open with you?
Hillary Johnson: I think you're right, people were very open with me eventually. It's what you call "fly on the wall journalism". I became a fixture in many people's lives. I went to every single major medical conference on this disease. For some people, I was a shoulder to cry on.
(PRODIGY Member) In your book, you talk about misappropriation of funds earmarked for CFS at the CDC. Do you know if there will be an investigation into that issue?
Hillary Johnson: I hope there will be, but for that kind of intensive audit of CDC activities, we really need to look to a Federal agency like the General Accounting Office (GAO). That will only happen when there is a Congressional directive for the GAO to undertake such an audit.
Hillary Johnson: Patients should ask for a Congressional investigation.
(PRODIGY Member) Is it true that you have CFIDS? How are you doing?
Hillary Johnson: Yes, it is true. I fell ill in March of 1986, so I am a decade long sufferer of CFS.
(PRODIGY Member) Hillary, thank you for coming tonight. Could you please explain this disorder so I can better understand it? What is the population and is there medication or a cure for this condition?
Hillary Johnson: Current estimates put the population at 2 million in America. There exists no known cure at this time. If someone had found the magic bullet, we would all know about it by now.
(PRODIGY Member) What is the average length of illness for someone with CFS?
Hillary Johnson: CFS is a chronic disease. The recovery rate might be as high as 40-50% in the first few months, or the first year. Past the two-year mark, full recovery drops radically. After five years, full recovery may be unheard of, or in the single digits.
(PRODIGY Member) I'm a 46 yr. old woman, wife, mother and grandmother. I live in Alaska, I have been sick for 30 yrs. I was diagnosed with cfids, fm, EBV+ in May '91. My doctor believes that my illness is viral related if not caused. I feel that chemical toxins have played a big part in the lowering of my immune system. Today, chemicals and chemical smells seem to trigger the onset of a flare-up, what of this? And if we live as chemical toxin free as we can will that make us better? Are there any tests for this?
Hillary Johnson: Many people with CFS have those same complaints. People with CFS do seem to have heightened sensitivity to chemicals of all kinds. But the evidence for causation of CFS points to a viral etiology.
(PRODIGY Member) Your book is wonderful. What is the latest in diagnosing the illness? Is the medical community any closer to discovering the cause and any possibly cure?
Hillary Johnson: Our Federal health agencies have betrayed us in this area, however a number of independent scientists and clinicians who are not influenced by Federal propaganda about this disease have made significant progress in understanding the neurological and immunological aberrations that constitute CFS. Regarding cause, three American scientists and one New Zealand scientist have found persuasive evidence of a novel retrovirus as a potential cause of CFS.
(PRODIGY Member) Osler's Web tells us about the inability of the Government agencies, CDC and NIH, to take this illness seriously. What can we do as PWCs to help revise this negative Government opinion and promote new studies and research?
Hillary Johnson: To use a cliche, knowledge is power. The more patients understand the history of this disease inside the Federal health agencies, the better armed they will be to bring this issue to their representative in the US House and Senate. Chronic fatigue syndrome is no longer a medical problem in this country, it has become a political problem and its solution will require political activity.
(PRODIGY Member) Ms. Johnson, what are your views of the "New" CDC Definition that says NO brains scans or immuno panels are needed for patients? This definition was done with the cooperation of CFIDS America and they hail it as a positive move. I view it as the biggest sell out of the patient group in the history of M.E./CFS.
Hillary Johnson: I agree.
(PRODIGY Member) There has been significant concern about the use of the word "contagious" without additional clarification, particularly in the media coverage. This is having a very serious impact for many PWCs. Can you please clarify your feelings about this issue and try to explain it in more detail when making public presentations?
Hillary Johnson: The issue of contagiousness is the most highly charged matter surrounding this illness. It's a question that MUST be faced by people with this disease, by people who live with people with this disease, by the Federal government, and by all Americans. We can face this issue now, or we can wait another ten years, when four million or eight million people have CFS. We don't know the risk factors for acquiring CFS. Clearly, it is easier to get CFS than to get AIDS, for instance, which suggests that there is casual transmission occurring.
(PRODIGY Member) During the writing of Osler's Web, how were your investigations received by the NIH and CDC officials?
Hillary Johnson: For starters, the nation's reputed expert in CFS, Stephen Staus, refused all requests for interviews for nine years. When I tried to acquire records and documents that would have revealed the true nature and scope of his research in this field, I was illegally denied them by the Freedom of Information Act Office at NIH. I was told by Freedom of Information Act officials at the NIH that I could not have these documents because the public already knew everything it needed know about CFS.
(PRODIGY Member) Has the reaction to your book, and your appearances on TV, been what you thought it would be? If not, how is it different?
Hillary Johnson: I've never been quite certain what the reaction would be to this book. It's something I've worried about all the nine years that I've worked on the book. I wondered: were people ready for the truth about this disease, i.e. that this is a contagious disease.
(PRODIGY Member) Do you have plans for May 12, International CFS/ME Awareness Day? Will you be participating in any CFS-related events?
Hillary Johnson: I am not a CFS activist, I am a journalist. I hope to spend May 12 sitting on my lawn, watching the grass grow.
(PRODIGY Member) I thought the interviewer on Good Morning America was a bit hostile. What did you think of how it went?
Hillary Johnson: I did not feel that she was hostile, although I did not feel that she was friendly. But her attitude is really irrelevant and what's important is what got said. I'm told the interview lasted six minutes and that she asked nine questions. When I walked off the GMA set, I felt as if I had been asked three in two minutes. This topic is so complicated that it's very difficult to speak about it in sound bites.
(PRODIGY Member) Ms. Johnson, would you please expound on the reasons why the National Institutes of Health were not responsive to your research. Is CFS a genetic disease and can it be detected through medical laboratory testing?
Hillary Johnson: The evidence for genetic predisposition as a risk factor in CFS is so minimal at this point that it is merely theory. The evidence for transmission of a virus, however, is quite strong. Again, I'm a journalist, this is not my research, it is merely research I'm reporting on.
(PRODIGY Member) Ms. Johnson, since you have brought this into the limelight, do you think the FDA may now act quickly to make drugs such as Ampligen available to us?
Hillary Johnson: First of all, Ampligen is the only drug I know of that appears to be quite helpful in this disease. There aren't a lot of other drugs waiting in the wings. Sadly, since FDA failed to approve expanded clinical trials of Ampligen in 1991, the company which owns the patent on Ampligen has taken its operations offshore. HEM Pharmaceuticals is conducting a clinical trial of Ampligen in CFS in Belgium.
(PRODIGY Member) There has been some discussion of asking for a congressional investigation of matters pertaining to the way NIH and the CDC have dealt with CFIDS and whether the cost of such an investigation would come from funds already allocated for CFIDS. Do you have any feelings or input about this matter and if so, who would you recommend we write to about it?
Hillary Johnson: I understand Congressman Gerry Nadler of New York (Dem), is interested in pursuing a Congressional inquiry into these matters. I suggest writing to Congressman Gerry Nadler and encouraging him.
(PRODIGY Member) I am trying to understand Stephen Straus of the NIH. Why are we asking funding for him if he acting this way and talking against us?
Hillary Johnson: It is a shame that Stephen Straus has received an average of $800,000 per year for the last decade to perform research that has served only to harm people with CFS. But Stephen Straus is not going anywhere. Patients need to ask their legislators to demand that the NIH allocate large sums of money to independent scientists who wish to pursue legitimate avenues of CFS research.
(PRODIGY Member) What will you do next? Are you working on another project yet?
Hillary Johnson: I would like to write another book but sadly, as a journalist, I know that I will never in my lifetime have a story this remarkable and this outrageous to tell again. Currently, I feel I have said as much as I possibly can on this subject.
(PRODIGY Member) What has happened to the research begun by Elaine DeFreitas? Is anyone continuing to pursue a viral cause that you know of?
Hillary Johnson: Unfortunately, Elaine DeFreitas's research is completely stalled. She was refused funding by the NIH, and the CFIDS Association of America withdrew their funding as well. Sidney Grossberg, a world expert in interferons, has received a small income from both the CFIDS Association and the NIH, to pursue his findings of a novel retrovirus in CFS sufferers. It's disappointing that no one inside the Federal government seems to want to find out whether Elaine DeFreitas and Sidney Grossberg are looking at the same virus.
(PRODIGY Member) Since CFS or CFIDS are such crummy names for this disease, is the CDC considering other more appropriate names and, if so, what?
Hillary Johnson: Based on my years of reporting on the CDC, it's my guess that the CDC will cling to this name 'til hell freezes over. Again, I emphasize scientific investigation into CFS must be taken out of the hands of Federal scientists and given to open minded, imaginative, independent scientists.
(PRODIGY Member) Have you had any feedback from the CDC or NIH since your book has been published?
Hillary Johnson: Personally, no. Other journalists looking to these agencies for responses to the charges I make against them in this book are finding that both the NIH and the CDC are refusing all comment.
(PRODIGY Member) It was mentioned on Prime Time Live, that based on your discussions with physicians, researchers and scientists that CFS is an infectious disease. Do you have further information regarding this issue? Is CFS contagious only during onset or should PWCs take continuous precautions to prevent the possible infection of loved ones?
Hillary Johnson: That is an extremely critical question, and one that I cannot answer. We must hope for and demand better research into this issue.
(PRODIGY Member) Ms. Johnson, I notice you, as many of us do, use the term "This Disease" instead of the name...Does that tell us we're embarrassed by the name?
Hillary Johnson: I am not embarrassed, the government should be embarrassed, and YES, I deliberately avoid using the phrase chronic fatigue syndrome whenever possible because I do not want to perpetuate the mythologies and lies.
(PRODIGY Member) As a PWC, I have the utmost regard for Dr. Paul Cheney and Dr. Dan Peterson for their efforts in trying to solve this malady. Do you have any updates as to their practices and are they continuing their research into the mysteries of this illness?
Hillary Johnson: My reporting on this story ended almost a year ago. My sense is that both of these doctors, having given more than a decade of their lives to thousands of people suffering from this illness, and having their expertise wholly diminished and even ridiculed by Federal scientists, are at a stage of wishing to move on.
(PRODIGY Member) Do you know yet if the book is selling well? I've talked to some people who can't get it because it is sold out in their local bookstores!
Hillary Johnson: I'm told the book is selling well. It's very frustrating to hear that people who want to read the story can't buy it in their local bookstores, however I would ask that they be patient. My publisher is planning to print more books. Books will be available.
(PRODIGY Member) Would you agree that the government has improved its response to the CFS epidemic since Dr. Philip Lee has arrived? Can we count on him to "be on our side"?
Hillary Johnson: I have not noticed any change whatsoever in the Federal government's activities around this disease since the ascendancy of Phil Lee. I'm afraid that for Phil Lee, it's business as usual.
(PRODIGY Member) Were you pleased with the Prime Time Live segment?
Hillary Johnson (Speaker) Watching the Prime Time piece for me was like an out of body experience. I have never seen any other media tell this story quite like that. I only wish they had made it more clear that the story they were telling was precisely the story I tell in my book.
(PRODIGY Member) What do you think is the most effective way to get the government to take us seriously? Should we write letters? Join the CFIDS Association?
Hillary Johnson (Speaker) Write letters to Senators, Congressmen, county health officers, state health officers, and the President.
(PRODIGY Member) There are many of us who are fed up with the government's response (or lack of) and just as fed up with the CFIDS Assoc. compliance with NIH and CDC. Haven't they failed us too?
Hillary Johnson: If you are fed up with the CFIDS Association, let them know. It may be that there needs to be a more politicized, aggressive patient organization to deal with a problem as intractable as CFS.
(PRODIGY Member) A great many PWCs want to rally together and write letters to the media and elected government officials. Who do you feel we should be writing to and will Crown provide us with media packages to send out?
Hillary Johnson: I'm afraid Crown is in the business of publishing books exclusively. I once worked in a Congressional office in Washington. Unquestionably, the most effective and impressive letters from constituents are those that are written from the heart. Don't worry about media packets.
(PRODIGY Member) I can't remember where I saw a criticism of your book, but it likened your book in importance to And the Band Played On. What do you hope will happen as a result of your writing Oslers Web?
Hillary Johnson: Again, I emphasize the fact that I'm a journalist, not an activist. My fond hope is that my colleagues and peers in journalism, after reading my book, will be less prone to accepting the pronouncements about CFS made by Federal scientists as gospel.
(PRODIGY Member) How are you feeling now? How long have you had CFS? How did you ever write such an enormously detailed, well researched book while you were ill?
Hillary Johnson: I lived the movie Ground Hog Day every day for nine years.
(PRODIGY Member) I have a four month old. I am now concerned that he may have contracted the virus in utero. There was so little info. on CFS and pregnancy. Do I have any reason to worry?
Hillary Johnson: I reiterate - I personally can't answer that question. We desperately need more and better research into risk factors and contagion.
(PRODIGY Member) While there clearly is neurologic involvement and many of our symptoms stem from that neurologic involvement, the term "brain disease" seems to be an over simplification with potentially as many pitfalls as the phrase "chronic fatigue." This phrase again is causing wide spread concern. Can you please clarify what you mean by this?
Hillary Johnson: I think we have to face facts. CFS is a brain disease, by that I mean - IQ drops, there are brain lesions, there is low blood flow in regions of the brain, there is very poor performance on mental status tests, there are significant memory problems, short and long term. Again, let's face the facts.
(PRODIGY Member) Given the impressive and meticulous job you have done detailing the scientific disputes regarding CFS and the rather discouraging prospect of changing NIH's agenda, what would you think of calling for an independent review by the National Academy of Science on how well or poorly NIH and CDC have handled this problem? NAS has done quite a good job previously on topics such as whether DOD had constructed research protocols adequate to detect birth problems for children of Gulf War Veterans?
Hillary Johnson: I think that sounds like a very imaginative and interesting notion, and it might be quite worthwhile. Certainly, there needs to be oversight, and quickly.
(PRODIGY Member) Thank you for all you have done on behalf of the CFIDS community. When will you publish your next article -- "After Osler's Web?
Hillary Johnson: As I said before, I would simply like to spend some time watching the grass grow on my lawn.
(PRODIGY Member) Thank you for doing your book, Hillary. I sent for it a month ago and it still hasn't arrived. Damn! Are you happy with the response you've been getting?
Hillary Johnson: I'm very unhappy that you haven't received your copy of my book! Please call the nearest Barnes and Noble and demand that they furnish you a copy.
(PRODIGY Member) Thank you so much for writing Osler's Web! It must have taken a tremendous amount of energy to prepare this book. Were there any moments when you felt it wasn't worth the effort or were you determined to finish documenting your research?
Hillary Johnson: There were so many times that I wanted to quit, I couldn't possibly count them. Each year that went by, however, it became harder to back away, because it meant that I had given up years of my life and would have had nothing to show for them.
(PRODIGY Member) You talk about the brain spots - the decrease in IQ - is there any indication that one’s brain can repair the damage?
Hillary Johnson: Some clinicians, Paul Cheney and Dan Peterson among them, have found that these lesions may come and go, and frequently change position in the brain. It's my recollection that one result of the Ampligen trial was that Ampligen seemed to make these lesions go away. Patients grew very debilitated once more when Ampligen was withdrawn.
(PRODIGY Member) Do you think there is a connection between AIDS and CFS?
Hillary Johnson: I don't know what the connection is, or if there is a connection, but there are so many similarities it is horribly anti-intellectual to ignore these similarities out of hand.
(PRODIGY Member) Do you think there is a connection between Gulf War Syndrome and CFS?
Hillary Johnson: General Ronald Blancke, who was for some time the military's spokesman on Gulf War Syndrome, told me personally that he believes these two diseases are one and the same.
Hillary Johnson: It was a pleasure to be here tonight. Thank you so much for your questions, they were wonderful questions. Thanks very much, and good night!
Moderator (Speaker) Thank you for joining us tonight, Hillary. It was a pleasure having you and we appreciate your time and all that you shared with us. We hope you will join us again. Moderator (Speaker) Goodnight everyone and thanks for joining us! We're sorry we didn't get to all of your questions, there were several hundred! Moderator (Speaker) Be sure to join us in the CFS Chat room! Goodnight from Los Angeles!